At the time of her interview, Dede was a 48-year-old woman with paraplegia who had been through a tumultuous journey. Ever since she was two years old, Dede had been in and out of the foster care system, but after being abused by a minister working in the system, Dede chose to live on the streets instead of with foster families when she was about eight years old and stayed until she was roughly 25 years old. Her parents struggled with mental illness themselves, along with her siblings, who had also been put through the foster care system. Dede had been on medication for quite some time due to her schizophrenia, and constantly moving from place to place to stay safe certainly didn’t help her cope with her environment.  Listen to her struggles with medication while on the move here: 

Along with many of the other kids she had been living with, Dede was moving from city to city, state to state, always on the run. She was able to find a few moments in her life where shelter was accessible, albeit, unconventional. In high school, Dede slept in the school’s basement with a couple of other kids, under the supervision of the maintenance worker and occasionally her principal. In exchange for living in the basement, Dede said she and the other kids would help out with maintenance work. Her principal even helped her earn her GED and tutored her during her first year at college. Unfortunately, coursework was oftentimes very difficult, as Dede was struggling with dyslexia and aphasia. This forced her to repeat several different grades and transfer to a smaller university. During this time in college, Dede was able to find an apartment with a roommate. However, after some time of having problems paying for rent and medication, Dede found herself again unhoused.  

Dede said she typically chose medication over rent whenever she was in such a situation. If she went without medication for a little while, she would start having hallucinations and sometimes cause others physical harm.  

“From what I’ve learned, that is a reaction or a coping skill I was taught by my parents and a couple of foster parents. And I’d use that. I’ve even decked the minister that I know because I was going through a flashback. I’ve always told him, ‘Don’t touch me when I’m going through them’ because I look like I’m out in space. He touched me and I belted him. Busted his eye socket. I don’t remember the seven hours after that”.  

Dede says that was only one of the few times where she remembers when she’s harmed someone. The majority of what she knows comes from the flashbacks she occasionally has. Thankfully, she doesn’t get many flashbacks anymore due to finally finding the right dosage of medication. Dede had been on quite a few different medications, but she takes roughly forty pills every day and has been for six years. She takes four psychiatric medications, but the rest are vitamins – she isn’t able to take in many nutrients from food due to problems with stomach absorption. Dede deals with more medical difficulties than just stomach absorption issues. 

Listen to the daily troubles she faces here: 

When she was younger, Dede had a few jobs, from maintenance to working as a fry cook, but she truly enjoyed being a social worker. She earned the license after getting out of college but wasn’t able to pay for renewing her license, along with the accredited courses that social workers are required to take. Dede says she prefers working with younger kids instead of teenagers and hopes to one day become a social worker yet again. Her local Catholic Church offered to pay for her courses and wanted to hire her whenever she felt ready. Yet, there are a few issues standing in her way, like the daily seizures she has, typically three or four times a day. 

Listen to Dede describing the possible problems she may face here: 

Going through all that she faces can be a lot for Dede. She says her best coping skill revolves around animals, specifically her two cats: Mixie and Skittles (pictured above). The oldest lets Dede know when she is about to have a seizure by lying on her feet while the youngest will lie on her body. Dede used to have a dog, but he unfortunately passed away. She says she is trying to get a new one via a GoFundMe page and a yardsale, but fears she will have to use the money raised for other things, like necessities.  

Other than playing with her kittens, there isn’t much Dede can do without proper transportation because of her wheelchair. “I watch a lot of TV and Amazon. I catch up on the movies that way. And I do go to church every Sunday. I don’t go on Wednesday nights because I can’t get reliable transportation, and Access is getting more and more expensive, so I can’t really get out with it”. Dede says she takes it day by day because that’s all she can do. However, there are a few times when Dede says she needs to go outside, especially when trying to stock up on groceries. 

Listen to how Dede gets around, especially in a food desert: 

In addition to difficulties finding healthy food and groceries, Dede says the rest of her neighborhood isn’t very safe. She had been living in her current residence for roughly a year and her previous one for seven years. Dede has also observed an increase in crime in her current neighborhood. She wants to move and has been trying to for some time, but her wheelchair poses a problem – many apartments are not wheelchair accessible.  

Despite all the chaos occurring around her, Dede hasn’t been suffering from any hallucinations or delusions. She still gets night terrors and flashbacks, but the techniques and coping skills she has learned in her DBT (Dialectical Behavior Therapy) sessions occasionally help. Dede has the most success with medication and music, but not for prolonged periods. To deal with symptoms she experienced earlier in life, Dede turned to drugs and alcohol. She started drinking at eight and eventually could only achieve a high if she drank a “22-pack of beer or a fifth of Jack Daniels mixed with white lightning”. Now, she says she has been sober for twenty years.  

Currently, Dede is living with her two cats, as mentioned previously, and has many activities she does weekly. When she can get proper transportation, Dede likes to go to the YMCA and partakes in water aquatic classes as well as water volleyball. She tries to attend counseling every Tuesday and DBT every Thursday. At home, she watches TV, plays with her Wii, and “torments” (as she playfully puts it) her cats. She likes to color, make jewelry, complete puzzles, and paint wooden items. Outside of her home, she likes to watch movies at a theater, go bowling, look at art galleries, and visit zoos.  

Along with possible social work in the future, Dede also likes to advocate for suicide prevention. Listen to her thoughts here: 

Most of all, Dede wants people to know that schizophrenia is merely a label. She says it is a very difficult thing to live with, yes, but not her identity.  

Rachel Star Withers was a 34-year-old Caucasian female living in Indian Land, North Carolina at the time of her interview. She holds multiple part-time jobs, including one job as a stuntwoman. NPR (National Public Radio) interviewed Rachel twice, and she currently has a YouTube channel and website. She also spends time dressed as Spiderman at hospitals, foster homes, and other places where children may need a moment of joy, or writing a children’s book about hallucinations.  

Rachel frequently experienced hallucinations as she grew up. When she was younger, visual hallucinations came in the form of monsters and other faces. In her youth, she thought everyone saw the same things, in part due to common phrases such as the reference to “monsters under the bed.” Rachel also thought everyone else could “watch TV” in their heads like her, which consisted of out-of-body experiences where she could observe multiple characters participate in different activities simultaneously. She could not control what any of the characters were doing. The TV in her head was not scary, but the demonic hallucinations she faced could be frightening. Because she grew up attending church, Rachel figured these demonic hallucinations were the demons discussed in conversations about the supernatural. She even told a few church members about the things she saw, and they confirmed the idea that her visions were demons.

Rachel: I always saw like monsters and different faces and things, and growing up I—I seriously thought that everybody saw this because you’re growing up and you’re hearing “monsters under your bed,” “monsters in your closet,” and I thought that’s what people were talking about because I saw the monsters. I just figured that’s what everybody was talking about. 

Once Rachel entered high school, however, she received different responses to comments about her hallucinations. During her junior year, when she talked about the monsters that she saw, peers appeared confused and asked what she was talking about. At this point, Rachel realized that perhaps not everyone saw the same things she did. Upon this realization, Rachel’s mention of her hallucinations decreased. By the time she was 17 or 18, she experienced hallucinations almost constantly. She went to a doctor and admittedly did not share all of her symptoms. Though she thought something was very seriously wrong with her, it was “scary” to disclose her experiences. Following doctor visits, Rachel was diagnosed with depression. After receiving a diagnosis, Rachel did not see improvement, but rather, a worsening of symptoms.  

Rachel: When I realized that not everyone saw the stuff that I did, I kind of stopped talking about it obviously. I was like, Oh, okay. I was probably around fifteen/sixteen, and when I was seventeen/eighteen, it started getting really, really bad. I just was hallucinating all the time. I was kind of out of control. At first, I went to a doctor. I was diagnosed with depression, and to be honest, I kind of held back. I didn’t want to tell him all the stuff that was going on because it was scary because I was like, Oh, crap. There’s something seriously wrong with me. So I kind of soft-balled it in there on what was wrong. And they diagnosed me with depression. Obviously, that didn’t really help me with anything. It just continued to escalate and get worse. 

When she was in her early 20s, Rachel received a new diagnosis: borderline schizophrenia. Following testing, doctors formally diagnosed her with paranoid schizophrenia. Her early 20s were spent living in various places. While in Texas, she attended a Christian school. There, she underwent an exorcism. The exorcism included three days of fasting and confessing sins; she was told that the devil resided within her body, and not God. Her family was unaware that this was happening to her, and for a long time, she felt horrible about herself. Rachel described this time period, as well as the following months she spent in the Czech Republic, as “rough.” For the six months she was in the Czech Republic, Rachel lived as a missionary and taught English. Rachel “hit rock bottom” when she lived abroad. Her experiences went downhill dramatically; she had no money, and she realized she needed help. After Rachel reached her low, her parents provided her with a return ticket to the States and welcomed her back into a stable environment. 

Rachel briefly describes her early twenties:  

As a junior in college, Rachel underwent electroconvulsive therapy (ECT) due to the worsening of her symptoms for depression and schizophrenia. Following six treatments, Rachel had to relearn how to read and write. She wrote and submitted papers written in marker, as it was easier to hold a marker than a pencil. Sometimes Rachel completed audio reports instead of written papers. While the electroconvulsive therapy and recovery processes were difficult, Rachel says that it worked; a lot of her deep depression and paranoia ceased. The grueling experience culminated in a major achievement: after about five years, Rachel graduated summa cum laude with a bachelor’s degree in sports entertainment events management. 

Although Rachel still experiences regular hallucinations, she is not as “freaked out” by them as she once was. She says part of this is due to her removal from such a state of deep depression and suicidality. While some hallucinations are visual, many are auditory. Rachel compares those that are auditory to the sound that is made when someone leaves a TV or radio on in another room in the house: a low murmur with few distinct words, or a radio being stuck between stations. The auditory hallucinations come and go, with the worst often being at night when she is trying to sleep. Other times, there is a ticking sound that she tries to find, but discovers that it is from within her head. Such hallucinations are ongoing, which is irritating to Rachel. However, many hallucinations are recurring, so she is accustomed to them.  

Listen to Rachel describe recurring hallucinations: 

Rachel developed coping mechanisms for her symptoms that enable moments of relaxation. While she has a high energy level, she also values taking time to nap, which allows her rest from consistent stimuli. Currently, Rachel is not taking any antipsychotic medications. Five years ago, however, she took “all the ones that were out,” though none seemed to help. Sometimes the medications helped to calm the hallucinations, but Rachel notes she would prefer to experience hallucinations as opposed to live in a “drugged-up” state. She compares the medicine she once took to a tranquilizer because it resulted in a state of exhaustion and excessive weight gain. The medications had lasting side effects as well, and she experiences shaking and tardive dyskinesia. Now, Rachel only takes Prozac and Buspirone. She also uses established coping skills which work to make the symptoms of schizophrenia manageable.   

Rachel: Pretty much antipsychotics for me, they usually have way more side effects than I get any relief from and um—so yeah, I currently am not on any antipsychotics but I’ve definitely been on all the ones that were out five years ago and for the most part, none of them really, really helped me. Some of them kind of calmed the hallucinations a little bit, but I’d rather hallucinate and be able to manage them than be in kind of a drugged-up state. And a lot of them were kind of—they just were—they were like a tranquilizer almost.  

In addition to her personal coping mechanisms, Rachel also has external support systems. About two years prior to the interview, she realized living alone was dangerous, and she would probably hurt herself. At that time, Rachel moved back in with her parents. Even now, it is beneficial for her to be in close contact with her parents; they check on her and provide encouragement and support. Her brother is also a source of support to Rachel. She does admit, though, that living with her parents at the age of 31 has social impacts. She recognizes that her unique experiences may set her apart from her peers. Overall, though, Rachel says that living with a mental illness has helped her become incredibly close to her family, which she is grateful for.  

Listen to Rachel describe her connection to her family here:  

Rachel tries to be open and communicative about her illness with others so they are aware of her potential challenges. Some coworkers and managers are helpful and serve as additional supports. However, not all people accept her illness. For example, one manager thought that Rachel was on drugs because hallucinations can sometimes make her appear “spacey.” Even though he was aware of her experiences, he joked about her using drugs. In another instance, a coworker told others that Rachel was scary.  

Now, Rachel is a freelance video content producer. She has a YouTube channel and specializes in comical stunts. Soon after beginning this venture, a TV show contacted her, and she got an agent. She has been doing this for 10 years, and plans to continue. Rachel also holds two other part-time jobs. She teaches modeling and acting classes and also works at a gym. Because of the nature of some of her work and a focus on appearance, Rachel states that maintaining her weight is a significant challenge. As part of her video productions, she has to watch herself on the videos that she makes, which she does not enjoy. As a tool to help with hallucinations of distortions of her body, Rachel has angled many mirrors in her home. 

Rachel: That’s one of the hardest things with the videos is sometimes I might film an amazing stunt and I’m like, “This is awesome,” but if I don’t like the way I look in the video…once I make a video and it goes for my stunts, it goes for my schizophrenia stuff, I don’t ever watch it. I don’t even like to edit them, like I’ll edit them without the sound on and then just kind of check it to make sure I didn’t cut out a word or something. But yeah, I can’t—ironically, I can’t stand watching myself. Usually when I watch the videos, my hallucinations play with them and distort what I’m looking at…Same thing that I can’t really look in mirrors. They kind of freak me out. They have to—all my mirrors are like kind of jacked at different angles and that kind of helps me. It’s hard for me to look straight at myself in a mirror without, you know, me seeing distortions of myself which are not good.  

At some point, Rachel’s stunt videos began to overlap with her openness about schizophrenia, and she now regularly posts videos relating to mental health. This goes deeper than simply sharing about her experiences. Rachel seeks understanding and possesses a desire to help others connect through discussion of mental illness, as she believes the U.S. culture toward mental illness is not great. She does mention, though, the positive changes she has personally seen following the national healthcare initiative. Since then, some mental health-related expenditures have decreased, and she has been able to join a good plan which has subsidized costs. Although Rachel notes some improvements regarding systemic change, she still notices assumptions that crimes or other acts of violence are primarily committed by those with mental illness.   

Her openness through media has enabled Rachel to create dialogue and space for connection. Additional means of connection and relationship can be found elsewhere too, Rachel states. She believes the best way for herself and other individuals with schizophrenia to meet new people and make friends is to work part-time jobs. According to Rachel, simply leaving the house can be the best thing for individuals with mental illness. Volunteer work is another avenue through which relationships can be built; Rachel says this also helps motivate individuals to not only get physically outside, but also outside their heads. Activities like working and volunteering can be rewarded by meeting people and building relationships.   

There is no typical day for Rachel, as each day varies based on her work and volunteer commitments. Each day consists of some type of work – whether it is one of her part time jobs or a video production. At the time of her interview, Rachel was working on a children’s book about kids with schizophrenia, with the goal of helping them work through hallucinations and other symptoms. Rachel is hopeful that the book will help make hallucinations less scary for children. She plans to self-publish the completed work. Her desire to assist children is put into action in other ways, too. Foster homes, hospitals, and elsewhere sometimes get a special visitor: Rachel, dressed in a Spiderman costume, handing out comic books and doing fun tricks for the children.  

Rachel: One of my biggest ways of helping myself is just not thinking about me. [laughs] Getting my brain out of me. One thing I like to do is, I’m a real big superhero person, but I dress up like Spiderman. Like I have a legit Spiderman, like it looks like it’s from the movies, costume. Yeah, I spent like a thousand dollars on it. [laughs] It’s pricey. It’s not like your Halloween costume. But I go to the foster homes and I dress up like Spiderman and I have a few comic book shops that they donate comics, so I’ll come and I’ll like, go, I give comics to the kids and other like—whatever the comic shops give me to donate. So it’s cool, they’ll get to meet Spiderman. This is where my stunt stuff comes in. 

On some days, Rachel may feel “down” and need encouragement. In such times, she draws encouragement from memories. The years surrounding the electroconvulsive therapy she received and relearning to read and write are not only sources of great pride for Rachel, but provide encouragement in such times that she needs it. Overall, she strives to remain positive; finding sources of happiness is crucial for Rachel. A key to her happiness is to “keep moving.” 

Hear Rachel describe her goals:  

Rachel is optimistic about the future. She has a love for adventure, and has a list of adventures she has experienced and those she would like to do. In past years, she backpacked all over the United States as well as through Europe on more than one occasion. This year, she learned how to surf and participated in her first boxing match. One of the next adventures on her bucket list is backpacking through China.  

Rachel has experience publicly sharing her story; she has even engaged with NPR. Public sharing can “weird [her] out” or be intimidating at first, even in her interview with The Schizophrenia Oral History Project. While she believes sharing is important, she does not enjoy talking about the beginning of her story, or the parts where she was out of control. It is freeing, though, to reach the end of the story.  

Luna is currently a 35-year-old woman from Morelia Mexico with three children ranging in age from nine to fifteen. She enjoys reading the Bible, playing music, and painting. 

Prior to Luna’s immigration, her parents moved to the United States for work. At 16 years of age, Luna came to the United States from Mexico in September 1999 and lived with her sister. She describes the journey as a relatively smooth process. Her family had a farm in Morelia, but the cartels evoked fear in her community. The cartels impacted her former neighborhood, and as a result, she saw young children selling drugs. Luna says her brothers didn’t let her out of the house. 

Listen to Luna talk about her trip to the US here:

Luna recalls a traumatizing series of events that occurred when she was around 10 years old. Despite rough river conditions, she and her siblings attempted to raft down the river, and she ended up saving two of her sisters from drowning. Around the same time period, she also experienced a head injury.  

Luna: And the river, the water was dark because it was like, storming at the time. We didn’t care, we called away… And then all—when we got to the river, my sister, she’s almost dead. Because she’s all the way down in the river. And then, oh my God. I came out and she’s with my brother. And I was like, “Where is [sister] and where is [sister]?” And she said, “I don’t know. I don’t know where they are. Maybe they’re already dead.” And then I jumped in the water and I found her and I needed to pull on her hair. And I pulled on my sister’s, little sister’s hair, and I took it out—and I came outside… And then I went again and I saved her. And then I went and I saved my other sister. So that was a big trauma for me because that showed me how that—how’s this life. 

Later in in adolescence, after Luna moved to Michigan, she dated a man who lived in Cincinnati. Although she was in high school and working at McDonald’s at the time, he asked her to move to Cincinnati to help him open a Mexican restaurant. As a result, she moved to Ohio. Not long after, Luna found out she was pregnant, and the father did not want the child. However, she decided to keep the baby and reached out to her other family in Ohio for support. She still feels emotional about this time in her life. 

 A few years after giving birth to her first child, Luna started dating a man who used alcohol and drugs. She attributes the onset of her schizophrenia to this relationship – he verbally and sexually abused her. With help from her family, she got him to move out.  However, after he moved out, Luna found out she was pregnant with his child. Luna told the father, and he was excited to be a dad. Luna notes that she was careful not to pressure him into an unwanted situation, but he moved back in with her. Eventually she was pregnant again, and he decided he didn’t want to help with childcare anymore, so he left before she gave birth to her third child. 

Luna later recalls a hard time that started with losing track of her oldest child. She couldn’t find her child, so she called the police. Although she found him by the time the police arrived, they arrested her for having three children in a one-bedroom apartment and for “smacking him [the child] with a belt.” The police took custody of her children. Luna thinks she started to get sick around this time, and it was hard because she had very little social support. After she served time in jail and paid her fines, she went to the hospital because of symptoms of schizophrenia.  

Luna: And that’s when they said I had a schizophrenic bipolar problem. Since then, I’ve been taking medicine. I attend groups sometimes. I try to do the stuff, try to take my medication and get stability, but how can I get my kids back? I try my best to be okay, you know. 

At the time of the interview, Luna had been taking medication for schizophrenia for ten years. She says the medicine helps her sleep, but she still hears voices. She does not tell many people about her schizophrenia because she doesn’t want people to think she’s “crazy” or to make fun of her. Luna feels that individuals who do not have schizophrenia misunderstand people who do have schizophrenia, and so she only discloses her illness to the people closest to her. Listen to Luna talk about how others may not understand here:

 When Luna was interviewed, she didn’t want her children back yet because she was still trying to “make her life together.” She was thinking about trying to buy a house and go back to school. She was working and saving money, wanting to get her GED so she could go to nursing school when she received her updated visa. She said she was praying for her green card – known officially as a Permanent Residence Card in order to live in the US permanently. 

On a typical day, Luna wakes up around 10 because she feels too groggy to wake up at 7. She takes a shower, cleans, watches some TV, makes lunch for her boyfriend, then goes to work. After work, she makes dinner, watches TV, and goes to sleep. Local services have been helpful to Luna – she says services from GCB (Greater Cincinnati Behavioral Health Services) have really helped her because she has a skilled doctor. Other service organizations that work on immigration-related issues have also been helpful. 

When asked about her best life memory, Luna recalls her pregnancies. She says her best memories in life are when she was pregnant because she was amazed by being able to carry a child. She was also proud of herself for being able to provide for her children. Listen to her talk about motherhood below:

Since Luna’s schizophrenia diagnosis, she connects more with her faith. She attends church, and her pastor encourages her to think about life and the role of God in her life. She attends disciple classes and grows closer to God.  

Luna dreams of helping people. If she were to go back to Mexico, she would build a house and open a little store and feed the poor. She’s also thought about starting a food program in her neighborhood for feeding hungry children.  Listen to Luna talk about some of her dreams:

When asked about how it felt to share her story, she responded: 

Luna: I feel okay. I feel release from my heart and my soul about what I was carrying from eight years.  

Luna decided to share her story because she likes to help people and hopes her history can help change the world. She also hopes to share with her children someday. 

Luna: …I like to help other people. Maybe my history can help to change the world, or help another lady like this. And because I feel when I’m talking, I try to make—my past is in pieces. My past is in pieces, so I try to put them close. And one day I would show—if you give me a copy of this on paper— I can show it to my kids and say, “This happened, that’s why I left you. Not because I don’t love you, but because I was sick.” 

At the time of his interview, Warren was 66-years-old. He was born and raised in Dayton, Ohio with his mom, dad, and sister. Throughout his life he lived in other locations around the U.S., but he now resides in Cincinnati, Ohio. 

Growing up, Warren played baseball, basketball, and football. As a child, he excelled at baseball and played on a selective team starting between the ages of 8 and 10. He also participated in Boy Scouts of America. Boy Scouts and baseball were two activities he enjoyed practicing with his father, who he aimed to make proud. 

Warren: I was in Boy Scouts, too. I was rising in the ranks of the Boy Scout rankings as well. I got up to be a star scout, which meant that I had ten merit badges or more. I was quartermaster of my troop’s properties when we’d go camping, and I was responsible to make sure everything gets checked out and checked back in, in the proper order. I was a member of Boy Scouts, and my father participated in that because he was good at camping and things like that. We had a lot of situations where we’d have a monthly campout and Dad would go with me, which was good. 

Warren describes the youth-version of himself as precocious, and at times, mysterious or inappropriate. When recounting his high school experience, he recalled his heavy involvement with sports, writing, music, and girls. Warren sought attention which was sometimes negative. This negative attention was met with beatings from his father, which influenced his current opposition to corporal punishment. Listen to Warren talk about some of his childhood here: 

During his senior year of high school, Warren received an early acceptance offer to attend Ohio Northern University. He played football and baseball during his first year of college, then decided to focus on his studies; his majors were English and Business Administration. He wanted to excel academically to make his father proud. So, he stayed in and studied hard during the week, then partied with friends on the weekends. 

Warren: Freshman year in college, I was obtaining good grades because I studied hard and wanted to make my mark in scholastics to please my father. Because he was spending all his money to send me to a private college, and I wanted to show him some achievement, which would make him proud of me. So I passed all my courses with good grades, As and Bs, and I found that studying came easy. I found that if I took myself out of all the extracurricular activities, I could devote myself to studying.  

Warren decided he wanted to become a lawyer. Although he performed well academically and engaged in scholastic clubs at Ohio Northern, his LSAT (Law School Admission Test) scores were not high enough to be admitted to many law schools. However, he was eventually accepted into Western State College of Law at Westcliff University in California. Unfortunately, he lost confidence in being able to pass the bar exam and left law school. So, Warren sent out several applications for employment at different companies and ended up at an insurance company in Ohio. 

Eventually Warren left the insurance position and started work at a software company based in Dayton, Ohio. The company transferred him to Tampa Florida, where he lived with his first wife. Things went well until he invested a lot of his wealth in starting his own business, which ultimately failed. During this time period, he started using cocaine, which led to his long struggle with addiction. His wife divorced him after having a baby, and Warren moved back to Dayton to live with his parents.  

His dad struggled with his health and died shortly after Warren returned. Warren relapsed with drugs and robbed a convenience store, and he went to prison. He got out after two years and was sent to Cincinnati, where he started working with the Salvation Army. A couple Salvation Army stores closed, and Warren resigned and started working a telemarketing position. Listen to Warren talk about his experience with relapse and reintegrating into society after prison here:  

Around this time, Warren met his second wife. However, the relationship lasted less than six months. He later met his third wife, who struggled with bipolar disorder. This was the first time Warren was exposed to mental illness. Perhaps because of the bipolar disorder, his wife got into financial trouble on multiple occasions. At some point, Warren says she falsely accused him of domestic violence, and their marriage ultimately ended.  

Later on, Warren decided to try to be an “upstanding member of the community.” He joined the choir at his church, and he became romantically involved with the soprano of the group. They got married and lived well until one of his medications caused problems with his mental health. To cope with his poor mental health, he started to use cocaine again, leading to marital issues and then divorce. During this fourth marriage, he reports he was diagnosed with bipolar disorder and paranoid schizophrenia. He received mental health services and started on medication to mitigate his symptoms.  

After his fourth marriage ended, Warren went through periods of sobriety and drug use. He lived in different places and held a couple different forms of employment. He robbed multiple White Castles to pay for his drugs, but was caught and sent to prison for five years. At the time of the interview, Warren had been out of prison and sober for over a year. Although he would like to be employed, he feels grateful for where he is in life: 

Warren: I’m not real happy about the state of the situation I‘m in right now being unemployed, but I at least get my social security, and now my needs are taken care of. I’m on a payee status and I get twenty-five dollars a week play money. They pay my rent and my utilities, my big expenses with the payee situation. So, I’m pretty much good today, and I thank God that I’m here where I’m at. Thank you for listening to my story. 

On a typical day, Warren tries to wake up and make it to Greater Cincinnati Behavioral Health (where he receives services) in time for breakfast. Listen to Warren talk about a typical day here: 

Wesley is an ambitious 29-year-old African American male living in Greensboro, North Carolina who likes to set and reach his goals. He loves basketball, sneakers, and graphic design. He spends a lot of time with his family at home, travelling, or at family reunions. 

 Listen to Wesley talk about his childhood here:

He describes his childhood with his brother, sister, and parents as ‘good’ and ‘fun’. He did well in school up until college, where he started to struggle academically. He attended the University of North Carolina at Charlotte to study graphic design until he was put on academic probation, and he moved home and worked for some time. Then, he returned to school to continue studying, and this is when he told a friend he was feeling “awkward energy he wasn’t familiar with.” 

Listen to Wesley talk about the emergence of his symptoms here:

His friend recommended church, so they went to church together. However, Wesley continued to feel “an intense negative vibe,” and started to experience auditory and visual hallucinations. He saw the word “devil” and had many conversations with his roommates in his mind. He recalls one roommate trying to coach him on how to forget what he was experiencing. 

Wesley’s strange experiences continued, and he felt he was in a predicament. On one hand, he realized something could be wrong and should address his experiences, and on the other hand, he thought he should ignore his symptoms because he knew the hallucinations were not real. He thought the symptoms may go away on their own. When he came home from school, he went to the hospital twice, but he wasn’t always sure about how to respond to questions from medical professionals about hallucinations. The doctors gave him medicine, which may have made his symptoms less severe, but he still hallucinated.  

While Wesley doesn’t hallucinate as much as before, perhaps due to the medicine he takes, he can still hear a voice saying “get it right” if he listens closely. He says he feels freer now than he did two or three years ago, but he’s still very conscious about the daily decisions he makes. He tends to spend a lot of time with his decision-making processes. 

Wesley: I feel a little more free, but I think I also have times where I’m just really—like I might be getting ready to drink sweet tea instead of water, and I’m very conscious of like, how is that going to affect my body, how is that going to affect my mind? Maybe I should just—I got to be strong and steer away from that because water is obviously the healthier choice and in the long run it’s going to [be] beneficial for my thought process. All this is going through my mind when I just make a simple decision like that. And when I go through other decisions in life, I’m doing a lot of thinking. Sometimes I still do things that I don’t really think about it because I’m like, life is short, I got to make something happen now. I don’t want to overthink it. Some things I’ll just spur-of-the-moment do, just because I want to have fun.  

When asked about things that help Wesley make good decisions or cope, Wesley thinks of his love and respect for family. He says his parents are helpful and inspiring, but he looks up to his brother and sister because they are closer to his age. He comments on the importance of really listening to what others have to say, whether he is listening to family members or public figures: 

Wesley is very close with his family, and travelling is one of his favorite activities to do with them. Though he experienced traveling along the east coast with his family throughout his life, he highlights an international trip to Morocco, Spain, and France. His sister was completing a study abroad trip in Morocco, and Wesley and his family visited for the last couple of weeks. It was the first international trip for multiple family members, and Wesley describes the trip as an unforgettable experience. 

Wesley: We went there, we visited Sevilla, Spain, and we visited Paris. I just remember telling them that it was such—it was a great trip, a lot of good things happened. A lot of fun things happened, but if there’s one thing I’m thankful for, I’m glad that we did it together. Because I could’ve took a—you know, she could’ve ended that trip by herself, I could’ve went on a trip like that by myself and it would’ve been fun to travel, but doing it with my family, I think that was my—I believe that was my mom’s first time out of the country. I know it was my dad’s first time out of the country. My aunt, I think she had traveled before, but my brother, he’s been all kinds of places. [laughter] Yeah. But for us to all do that together, that was an unforgettable experience. That was probably one of the biggest family experiences of my life. 

In addition to traveling with his family, Wesley enjoys seeing his immediate and extended family frequently. Social media helps Wesley stay up-to-date with family, but he looks forward to cookouts and family gatherings because it helps him keep up with his family members’ lives. He may even randomly drop in at his grandma’s home to visit with another family member. 

At the time of the interview, Wesley had been working at a safety shoe company for two and a half years. Although he doesn’t work in the design department, working with a shoe company is in-line with his ultimate goal of designing sneakers for athletes. It’s his dream to transform the world of shoe design in order to design the best shoes for athletes and aspiring athletes while using environmentally-friendly materials. He also hopes to change the world by helping with mental illness awareness. 

Wesley: So maybe just become a great designer overall and change a lot of things in the world through that. However I would do it, by the time I got there, if I got there. So maybe change the world through that, and help make a big difference with mental illness. I think that’s another thing that I’ve kind of gathered or gained interest in over the years, especially after my experience. I’d like to help out mental illness—mental health awareness and stuff like that a lot. 

A typical day for Wesley starts with a good breakfast followed by a trip to the gym or listening to music, then going to work. After work, he routinely checks his email, Facebook, and other websites while he watches TV. He tends to fall asleep in front of the TV until his dad tells him to go up to bed early in the morning. On the days he doesn’t work, he tries to go to counselling and visit other individuals at a nonprofit for adults with mental illness that emphasizes psychosocial rehabilitation. About once a month, he works on sketches or designs. You can find some of his art at the bottom of this page.  

Wesley finds a lot of joy in the game of basketball and is helping to give back by teaching young kids how to play. Basketball has taught him teamwork, patience, and working together for a goal. He believes it’s important to work hard for your passions, respect positive figures, and listen and pay attention when someone is telling you something. 

Wesley told his story to help raise awareness for mental illness because he is one piece of a bigger narrative for mental illness. He describes this experience as helpful because he hasn’t ever talked about his story “to this degree.” It brought up positive feelings for him, especially regarding family. 

Chris Williams is a 44-year-old African American male from Cincinnati, Ohio, and his life experiences are anything but mundane. He currently lives alone in an apartment void of furniture. Chris tries to keep himself involved with other people and participates in volunteer opportunities.  

As the tenth child, Chris was born to a large family in Cincinnati. He received good grades in school until he reached seventh grade. Then, his straight-A status began to slip as he experienced “family issues” at home: his parents separated. It was after this time, when he was about 13 years old, that Chris had his first encounter with law enforcement. One evening, while with siblings and friends, there was an incident that included throwing bricks at a liquor store in order to enter the store and find food. The teens were at home by the time police officers arrived to ask what happened; the others blamed Chris. He was told he would be charged with breaking and entering, and was sent to see a probation officer.  

Chris: And the glass broke to the store, and they started looking around in the store, walking around in the store. There was no alarm in the store, so we all walked in there and we took food, [laughs] you know, we took food. We ate it. We laughed and before I knew it, the next day the police were at our door, and they were asking us questions, asking children around the neighborhood, What happened that night? What happened that night? And they all pointed the finger at me because I was the one originally throwing the bricks at the wall by the store. So, that’s the first time I got in trouble, when I was about twelve, thirteen, fourteen years old. They told me that they were gonna charge me with a B&E. 

Following this first encounter with law enforcement and a probation officer, Chris began a program through his school called Citizens Committee for Peace. The program allowed him to “work” volunteer positions while also attending school. A highlight of this program was the chance Chris had to work at the Cincinnati Zoo. In 1987, Chris graduated from Hughes High School in Cincinnati. 

Upon graduating high school, Chris worked a few different jobs, from being a dishwasher to a downtown hotel employee. Then he moved to Northern Kentucky, where he lived with a friend and the friend’s parents. Chris remembers noticing that he was the only African American individual around; the family he lived with and the neighbors were Caucasian. During this time, Chris met his friend’s 15-year-old niece, and through conversation, learned that she was experiencing repeated sexual assault. Chris encouraged her to contact law enforcement, and she did. He then describes the confusion that followed, in which some thought he was the one responsible for the assaults. This resulted in his involvement with the court system. The Probate Court ordered that a psychological evaluation be done on Chris. His chargers were then dropped, and the young girl received support.  

After this confusing time, Chris moved back to Cincinnati, where he bought a house and lived with roommates. He was also hired as a corrections officer. One night, some of the other officers who had been hired around the same time as Chris were staying at his house. Chris describes a traumatic experience of being drugged, beaten, and sexually assaulted by one of the other officers wielding a gun and a knife. Through the struggle, they eventually ended up on a second-story ledge, and Chris says that ultimately, the attacker was decapitated, and Chris landed on the street below with the head in his hands. Chris was told that he would be charged with attempted manslaughter.  

Chris recalls an additional experience of being approached by a man in a workplace who tried to solicit sex; this culminated in Chris beating the man up to fend him off. Due to this experience in addition to the assault which took place at his home, Chris thought these things were happening to him because he had tried to defend the young girl discussed previously. He thought there were correlations between the events.  

Drawing on these experiences, Chris determined that something strange was going on. He contacted the Social Security Administration, writing that he felt paranoid and concerned that the “correlations” that were occurring in his life were normal. The recommendation was to get in touch with a service provider, such as a doctor, that could help. An additional suggestion was to eliminate drugs and alcohol and attend some meetings to help with that. Following the advice, Chris attended some Alcoholics Anonymous meetings.  

Chris describes his contact with the Social Security Administration here:  

Chris continued to experience “linking situations together as if they had a correlation of some sort,” and wondered about conspiracy theories against him. He went to a doctor, and was prescribed medication, including Xanax.  The pills he was prescribed were very powerful, and Chris felt he could not function well. When he mentioned this to the doctor, he was told that they should be making him inactive so he could “recover.” After Chris began taking medication, he was arrested for breaking and entering because the medicine caused an “attack,” during which he broke into a home.  

Chris: …I was arrested by the police for breaking into someone’s house in another B&E, which I threw a window—a brick through the window and climbed in and called the police because I had an attack on the street from the Xanax and Valium and couldn’t make it home. I couldn’t see. There was—I closed my eyes. It was hard for me to open my eyes for some reason. I squinted them and could not open them. It was cold outside. I got confused about where I was. I called the police on the phone inside of the house and they arrested me for aggravated burglary. 

After being detained for burglary, Chris continued hearing voices and experiencing paranoia and hallucinations. He was given the option of being imprisoned or sent to a local hospital. In 1994, he was sent to Chillicothe Correctional Institution, where he remained until 1996. While there, he tried various medications, but they made him “spacey,” scared, and paranoid. Chris says he was given the option of going to the hospital for outpatient treatment, but chose to stay in the correctional facility until his sentence was over. He describes himself as “deteriorating” at this point.  

Chris returned to Cincinnati in 1996, at which time he was referred to as a “psychiatric patient.” When he was 22, he received a diagnosis of psychosis, posttraumatic stress disorder (PTSD), and schizophrenia. Later, he also had symptoms consistent with bipolar disorder, depression, and anxiety disorders. Through the symptoms associated with such diagnoses, Chris experienced suicidality, delusions, calmness, and alterations from medication.  

Due to his diagnoses and symptoms, Chris has received various types of treatments for about 20 years. Through these years, aside from one instance, he has not had a male doctor or service provider. Chris says this is due to his lack of trust in men, citing his past assault as a reason for mistrust. In addition to general mistrust, Chris states that issues of sexuality might have posed barriers to working with male service providers; he says that it would have been hard to connect with someone, such as a psychiatrist, who did not share Chris’ understanding about his sexuality. He expresses concern that a lack of understanding could have occurred. Chris believes that he likely would have had preconceived ideas about a male trying to treat him, and this would have made treatment incredibly difficult.  

Listen to Chris share why he has not had male service providers: 

In past years, Chris was “actively homosexual,” but now describes himself as bisexual, which has been “liberating” for him. Currently, he has been in a relationship with a male partner for four years. He desires a family and says that eventually he will choose to be loyal and faithful to either a man or a woman.  

Now, Chris describes his world as “quite large,” as he spends time with friends and tries to stay involved in the community. A typical day includes time spent with his partner, who has also been diagnosed with a mental illness. They spend time working through their symptoms together, providing each other with accountability regarding medication, and discussing treatment. He sometimes volunteers at shelters or with children.  

His daily life is not without struggle, however. Chris says that sometimes he becomes preoccupied on bad days, during which he will talk to himself or, because of his involvement in his thoughts, completely blank out when individuals are speaking to him. To combat this, Chris says that he has to remain very focused on his routine, and not get too involved in life apart from his treatment. Chris says that the most helpful support for him has been his relationship with his female psychiatrist.  

Though he does have support and is involved in his community, Chris sometimes feels as if life is passing him by, and it seems as if he is being “looked over.” At times, it seems like he is insulted by individuals who have never experienced mental illness or do not address their own addictions. Chris believes that some individuals need to be in treatment themselves rather than look at him as a “weirdo” for seeking treatment. He expresses some resentment about this topic. 

Chris: I feel like life is passing me by. I’m being passed over, I’m being looked over, I’m being made fun of, I’m being insulted by people who don’t have mental illnesses, by people who don’t address their addictions and the causes of deterioration of the mind and body, and they solely look at me while I’m in treatment as some sort of weirdo when they need to be in treatment, when they need to seek some treatment because their problem is bad when you don’t see them out in public and they’re alone by their self and deal with their demons. While they’re not in treatment, I’m getting better and they’re getting worse, and I will end up recovering and their hope is that they will have someone to talk to, but it won’t be me. 

In thinking about the future, Chris says he has finally reached the point where he does not desire to work anymore; he hopes to be able to relax and be happy. Chris has changed careers and spent time helping others, and he no longer feels the draw to do such things. Additionally, Chris pictures himself leaving Cincinnati, with Africa being a possible destination. He desires acceptance, and hopes to find a location where “everyone knows [his] name.” 

Chris credits his psychiatrist with encouraging him to participate in The Schizophrenia Oral History Project, and says that he has many stories he could share. What he most wants to share with The Project, though, is his belief that individuals can recover based on what they know about themselves. He says that some may not find his story liberating, and it might make them uncomfortable. However, he feels that his experiences have given him a higher respect for mankind as a whole.  

Chris shares why he spoke to The Project here:  

Joseph Peragine is a 35-year-old Italian-American living in Brick, New Jersey. He is a musician and a writer. As a product of these talents, Joseph recorded an album and published an autobiography based on journals he has kept since childhood. See more about this on his website.  

As a young adult, Joseph was diagnosed with paranoid schizophrenia. However, he began to experience symptoms during his childhood and teenage years. Joseph describes his childhood self as happy and hyperactive; this hyperactivity caused some to even suggest that he might need medication for ADHD. His dad recognized the hyperactivity as something typical of most children, and encouraged Joseph to participate in sports and other activities where his energy could be utilized. This worked for a while, but as time passed, sports no longer held his full interest. Instead, Joseph began to play guitar.  

These years also marked the start of puberty for Joseph, and with this, intensified symptoms. Looking back, Joseph states that he had actually been experiencing symptoms for much of his younger life. These were small things, though, that did not leave lasting impressions. Symptoms included auditory and visual hallucinations, feeling intensely deep emotions and sensitivity, and seeing colors or images from his childhood bed. At the time, he did not experience fear when his symptoms emerged. He also comments that as a child, he did not have the self-knowledge or capabilities of expression to communicate such experiences.  

Joseph: But as I started to hit my teenage years and I started going through puberty, my symptoms of my schizophrenia—I was unaware that I had schizophrenia at the time, but the symptoms of my schizophrenia started becoming more intense. And now looking back, being thirty-five years old and looking back at my entire life and trying to remember things, I’ve been experiencing symptoms and hallucinations and things like that my entire life. Like ever since I was a little kid. But when I was a little kid, they were kind of just little, like, auditory things and little things that I would see, but they really wouldn’t be too intense or long—make a long-lasting impression on my mind. 

The passing of time meant intensified symptoms for Joseph. Symptoms became clearer when considering the paranoia surrounding his relationships. He thought his girlfriend was cheating on him or his best friend was stabbing him in the back. Outward manifestations of his symptoms increased as others noticed him lashing out. Due to this paranoia and related psychotic episodes, individuals “alienated” Joseph, and he began to feel isolated. As his “loner” status grew, he became more deeply entwined in the “delusional world” inside his head. Rather than being restricted to only those he was in close relationship with, Joseph became paranoid that every person he came into contact with was a part of a conspiracy against him. By the time he was 19, delusions morphed into those of grandeur.  

His parents thought he could have been experiencing things that any “defiant” teenager would experience. After he began to lash out, however, the dark intensity increased, and soon, individuals began to tell Joseph that he “needed help.” His parents tried to get him to see a psychologist, and for a short time, he did. After a few months, however, Joseph elected to forego help, and decided that he would be fine on his own. Joseph began to cut himself, which allowed him to refocus his attention away from the thoughts in his head.  

Joseph: I was a cutter. I used to cut myself a lot. I used to—I used to—because my logic the whole time was, with my self-mutilation and everything like that, was that—you know, the thoughts in my head were so chaotic, so—I mean, I was suffering. So anything that I could do to focus—to refocus my attention onto something else to get me away from the thoughts that were in my head, that’s what I did. So I would cut myself and things like that, because the pain, the intense pain that I would feel would refocus my attention away from my thoughts. Even if it was only temporary, like the pain would make me relax, [laughs] if that makes any sense.  

Eventually, Joseph reached a point of suicidality. Naked and in a delusional state, Joseph attempted suicide, not fully realizing what he was doing at the time. He now recalls being on the highway and thinking that he was on the wrong side of the road. Delusions caused him to believe that there were spirits and forces he needed to face in order to save the world, and that this could be achieved by going through a car and crossing into a parallel universe. In reality, Joseph’s car crashed and he dropped from the road into trees. 

Hear Joseph’s description of the suicide attempt: 

Following this incident, Joseph was admitted to an institution. He first learned about mental illness at this institution. It was also where Joseph saw his diagnosis written for the first time; the doctor penned “schizophrenia” during the initial assessment. He did not know what the term meant, and was afraid that he would be “locked up” for life. Due to this fear, Joseph tried to change his story to get released from the facility. He began to describe depression and suicidality, and as a result, the doctor misdiagnosed him with bipolar disorder. 

Joseph: I was in an institution, and when I was in the institution I saw the doctor write “schizophrenia” down on paper when I was being interviewed or evaluated, whatever it was. At that point, that was the first time I had seen that word and I didn’t know what it was, and I was very terrified and I thought that I was going to get locked up for life because I didn’t know what it was or anything like that. So I changed my story to get out of the institution… and they actually misdiagnosed me as bipolar. 

Eventually, he received the correct diagnosis of paranoid schizophrenia, and Joseph began treatment in 2001. By this time, he was in his twenties. During therapy, Joseph came to realize one of his symptoms: hearing voices. This was something he had encountered for many years, but treatment came with the realization that this was a symptom. Joseph describes “hearing voices” as, at first, like having a song in one’s head. While this may seem like something that everyone experiences, he notes that for individuals with schizophrenia, there is a lack of control over what is being heard. For example, it may begin as seeming like a song that he has heard many times before, but suddenly the words change without his control. At night, he would also hear distant noises that sounded like a large crowd, which culminated in questions directed at him specifically. As he got older, his mind began to hear voices of people around him. As this continued, the voices became offensive, telling Joseph that he would never amount to anything and that he was a horrible person. Things in Joseph’s mind began to blur, to the point that he believed that the physical people around him were truly thinking what the voices in his head were saying. As a response, he began to lash out at others, which added fuel to the fire of his hallucinations and delusions.  

Experiencing hallucinations and delusions contributed to Joseph building defense mechanisms. Even though the outward expressions of these symptoms may have appeared hateful or violent, Joseph states that these were done in self-defense; deep down, he was the same as he always had been. His true character remained, and even when he lashed out or got in fights, inside, he continued “fighting for the right of good.” 

Joseph explains his self-defense here: 

Even if Joseph knew his true character and experiences, others often only saw the outward manifestations of his symptoms. Some people called him crazy. This upset Joseph, as at the time he was insecure about what others thought of him, especially if it was clear that they believed something to be wrong with him. He recognizes now that his peers likely did not have the ability to fully comprehend what Joseph was experiencing, in part due to being wrapped up in their own lives and choices. Thus, rather than receiving support from his teenage acquaintances and friends, he felt like an outcast.  

Additionally, this lack of support might have been, in part, from a lack of awareness of mental health issues at the time. Mental illness was not something that was largely discussed at the time (1990s and early 2000s), both within Joseph’s circle of family and friends and the general public. Perhaps due to this lack of discussion and awareness in his earlier years, Joseph now desires to talk about mental illness openly and work to increase others’ levels of awareness. Joseph’s method of doing this begins with interaction with others. He typically waits to disclose his diagnosis with someone new until after conversation and becoming acquainted. If the interaction feels comfortable and the direction of the conversation feels natural, he will share about his experiences with paranoid schizophrenia. When this disclosure occurs, people are often interested in learning about mental illness. Frequently, they do not possess in-depth knowledge of the topic due to limited previous conversations or education. Joseph approaches conversation and awareness in this way because he believes dialogue occurs if he and the other individual share experiences and interests. Shared experiences provide Joseph with the space and capability to engage in conversation and provide education to increase awareness.  

In addition to lack of knowledge about mental illness, stigma tied to mental illness also serves as a barrier to engagement and understanding. According to Joseph, stigma can come from multiple sources. For instance, movies and television shows seem to “glorify” schizophrenia, or news stories link atrocities to mental illness or schizophrenia specifically. In turn, individuals may begin to assume that those committing terrible acts must always have a mental illness. Thus, many tend to associate “schizophrenia” with negative beliefs or connotations.  

Joseph feels as if stigma surrounding mental illness can be broken down if the educational aspect comes from someone who is calm and mellow. For his part in combating this, he works to present himself in a positive way. He is hopeful that with the increased and improved treatments that help individuals with schizophrenia live high-functioning lives, there will be a decline in the stigma around schizophrenia and mental illness as a whole. While this can occur through face-to-face conversation, Joseph also combats stigma and misunderstanding through his musical and written work (http://www.josephaperagine.com).  

Listen to Joseph describe stigma here: 

Getting to the point of working against stigma and engaging others in positive interactions did not come without persistence and hard work. Joseph has been in treatment for 16 years and includes therapy as well as medication. At the start of treatment, his psychologist would identify Joseph’s triggers, which were the things that increased his hallucinations and delusions. After identification of triggers, Joseph would “baby step” into them; if it became too much to handle, he would step back. Each session, he would step further into his triggers, with the end result being desensitization to the things that made him “sick.” Indeed, Joseph was eventually able to overcome the majority of triggers that caused his symptoms. When this began happening, his doctors encouraged him to explore his creativity, which resulted in writing and making music. He started journaling and creating music about his experiences. At first, doing so caused Joseph to become upset as he re-experienced the past through his creative projects. Now, however, experiencing such things repeatedly causes desensitization. Joseph does not create for his benefit only, but for others as well. When others encounter his work with a positive reaction, deep conversation can follow. This causes Joseph to feel a connection with the people around him, and he feels as if others are accepting him into a world that he once thought he would never be accepted into. 

Joseph: It creates a meaningful connection with me and people around me, and when that happens, it makes me feel like I’m at the—at one time the world that outcasted me and didn’t understand me, one by one the people that I present my stuff to, I feel like they’re accepting me in the world that at one time I thought would never accept me. And that feeling of positivity and connecting with people and making those meaningful connections, it became addicting because it made me feel better about myself and my own situation. The more I did that and the more positive feedback and reaction I got out of it, the more I wanted to do it. 

Positive connections with others encourage Joseph to continue creating. Creation allows him to refocus his “manic energy” into music, writing, and other activities that work toward a positive goal. Joseph also perseveres due to the value he places on open dialogue about feelings and experiences; he says that an important part of having schizophrenia is the need to discuss experiences so that others may become aware. In this way, Joseph experiences a sense of purpose and accomplishment; he feels as if he is helping not only himself, but others.  

A typical day for Joseph begins with coffee. Then, he works a nine to five shift as a lab technician, where he interacts with others, works on projects, and meets deadlines. In the evening, he makes dinner and spends time with his girlfriend. He describes himself and his girlfriend as “foodies.” He spends some evenings writing or recording music or journaling. Schizophrenia is always on Joseph’s mind, and interwoven in the day-to-day is Joseph’s view that recovery is an ongoing, daily process; he has accepted the fact that he will be taking medication for the rest of his life, and that the upcoming years could be a “fight.”  

While many of his days are good, Joseph is quick to point out that there are bad days mixed in. Sometimes he may not feel well and he will experience hallucinations. Other times, his anxiety feels heavy, which causes the need for him to “step back.” If he is at work and a visual or auditory hallucination begins, he might take a sick day and go home. This is one tool that he has learned to use in addressing such situations. Often, the most important tools are self-awareness and knowledge to recognize when something is “off.” For instance, he has noticed that if he lacks an adequate amount of sleep, he may become symptomatic. Therefore, Joseph places great value on a structured routine that includes specific sleep, work, and relaxed time. Routine helps him stay well, and too much deviation can cause him to become symptomatic. Joseph compares this balance of routine and the unexpected to detective work, where he must assess what is going on and decide how to best handle the situation.  

To maintain his daily structure and refocus his energy requires great concentration and effort on Joseph’s part. He says that hallucinations are never really gone; they are present but masked by medication. Persistent hallucinations, paired with the required concentration, can become exhausting. This exhaustion does not stop Joseph, however, and he is strengthened by the positive and meaningful connections he has made with others, as well as his efforts to help the world understand mental illness. Joseph’s positive outlook on life is an additional source of his strength. 

Joseph also receives support from his family, and the positivity from them and his girlfriend encourages him to also remain positive. They place value on finding humor in situations, even tough situations. Joseph recalls a time when a lunar eclipse was supposed to happen, and his mother called him ahead of time to tell him that if he saw that, it would be real and not a hallucination. This is just one example of the way that his family values laughter and humor in their desire to demonstrate and share positivity.  

Joseph talks about the importance of positivity and humor here: 

Joseph says he would not change much about his life. Without schizophrenia, he would not be the person he is today. He believes a diagnosis of schizophrenia has humbled him and created a deeper appreciation for life and its moments.  

Joseph: I don’t think I would change it. Now that I have it under control, I don’t know. I don’t mind. [laughs] Because it doesn’t get in the way of my life anymore. I wouldn’t be who I am. I wouldn’t be the person that I am. I wouldn’t have my personality. I would be a different person and I wouldn’t know who that person would be. Would it be a bad person? Would it be a good person? Would it be a—you know, I have no idea. I don’t really tend to think about those things because you get whatever life throws at you, and whatever life throws at you, you have to make the best of it. I’m just making the best of it and like I said, it could be a lot worse. I really don’t think there’s anything I would change. 

Joseph enjoyed sharing with The Schizophrenia Oral History Project. When he talks about his experiences, he feels better.  

Joseph’s Message:  

I’m just like, a normal guy trying to get through my day to day, just like you are. I have the same fears and unanswered questions in life that you have, and I’m just trying to survive like everybody else. There’s nothing different about me. I’m not a killer. I’m not like a multiple—I’m not like—I’m not harmful to society. I’m just an everyday person trying to live my life like you are. 

Hear Joseph’s message here:

Allie Burke is a 30-year-old Caucasian female living in Long Beach, California. She is a California native, and she enjoys being close to the city, mountains, beach, and any kind of cuisine she might like. She enjoys reading and writing. Allie has written for magazines, published books, and keeps a personal blog.

Allie was born in Pasadena, California, where she lived with her parents until she was three years old. At that time, her parents divorced, and Allie went to live with her mother. This is when she began to hear things. After her mother tucked her into bed and turned the lights off, Allie heard “dark and whispery and scary” voices. She would try to hide under the blankets, but was still scared to go to sleep. Allie tried to express to her mother what she was experiencing, but it was hard to know what was really going on at such a young age.  

Allie: I got to a point where I never wanted to go to sleep. But when you’re trying to explain something like that, that you’re scared, to your parents—or in my case just my mother—it’s kind of a situation where they’re thinking, She’s just being a kid. She’s just scared of the dark, no big deal. Just be consistent. Keep putting her to bed and it will all work out. 

Though they moved multiple times, she lived with her mother for the next ten years. Every year, Allie found herself in a new school, and her mother worked multiple jobs to provide for Allie and her little brother. Allie’s uncles often came through her home, and she thinks that they and her mother were involved in criminal activity. Allie was exposed to this activity as well as drugs, and describes her childhood as “very rough.” Eventually, Allie came to the realization that she had to stop trying to save her mother. Right before she began eighth grade, Allie moved in with her father. 

Her symptoms continued, but when she was young, Allie thought it was all normal; she thought that everyone heard voices. It almost seemed as if she had an imaginary friend. When she became a teenager, though, Allie’s symptoms caused her fear. The things she was experiencing were scary, and she tried to “turn it off” with activities like drinking alcohol and trying drugs.  On top of what she was already experiencing, Allie experienced the trauma of sexual assault at the age of 16.  

Allie describes her teenage years here: 

When Allie began college, the voices got worse, and she recalls trying to take a test but only hearing the voices. Though Allie stopped attending college because of the high level of stress she encountered, she did receive certifications in product management, visual basic programming, and computer security. When she was in her early twenties, Allie was constantly paranoid, and often thought that people were trying to poison her. During this time, Allie got married. However, it was a struggle because of her paranoia. She told her husband about what she was experiencing, and he expressed fear and the desire to not discuss the topic. Through this time, Allie dealt with her symptoms as best she could. If she got to the point of suicidality, she checked herself into the hospital.  

Allie: I did end up getting married in my early twenties. Just after I got married is when my marriage was kind of falling apart. I was really struggling and turned the fact that my marriage wasn’t going well on myself and thought there must be something wrong with me. I had told my husband that I heard voices sometimes and he said that it was really scary and that he didn’t want to talk about it anymore.   

Allie decided to see a psychotherapist, who referred her to a specialist. She was told that she had a sleeping disorder, and was prescribed sleeping pills. Nothing changed, though, and six months later, Allie went to a different psychiatrist. At the age of 25, she was diagnosed with paranoid schizophrenia. The first medication she was given, Risperdal, made daily functioning difficult. Some of the side effects included blurry vision and excessive tiredness, and Allie began sleeping at least 12 hours a night. Allie got tired of bouncing between psychiatrists and medications, so she admitted herself to a mental facility. Allie thought she could be “fixed” very quickly and would be able to leave the facility by Monday, in time for work. However, she only remained there less than six hours, because she was scared of the people there and the length of time that they had been there. She remembers the other patients looked robotic, like they had no soul or emotion. She checked herself out of the facility, and shortly after, got divorced.  

Hear Allie discuss checking herself into a mental facility: 

Allie’s recent life, though, has been “pretty successful.” She takes a medication, Seroquel, which has worked well, and for the past nine years, has worked at the same job. Currently, she is the vice president of Stigma Fighters, a non-profit organization, and is the executive chair of the board. Allie speaks to the unique difficulties that individuals with schizophrenia may experience in the workplace. She says that the majority find it difficult to sit in an office for eight hours each day. In addition, there are multiple side effects of medication, such as blurry vision or trouble focusing that present barriers at work. Lunch and other breaks do not provide enough respite to maintain the necessary level of focus. Allie would like to see employers become more open-minded to people with mental illness by providing flexibility when needed. Allie knows there is always risk when disclosing a mental illness, and individuals can lose their jobs if the “wrong person” finds out about a diagnosis. There are laws that are supposed to prevent such actions, but Allie says they do not really protect those with mental disabilities. Sometimes, individuals facing similar challenges still lose their jobs. Allie also stresses the importance of having freedom to be able to tell others when there is suffering or help is needed; an open environment of trust in the workplace is critical.  

Allie: So I’d really like employers to start trying to be a little bit more open-minded, not just about people with schizophrenia, but people with mental illnesses in general, because a lot of people with other mental illnesses take the same medications we do. What I’d like to see is, like I said, for them to be a little bit more open-minded. You know, allow people to work from home some days, allow split shifts, maybe allow people to come in later. Try not to be so strict because when you’re strict, you’re putting people in a box and not everybody fits in that box, especially people with schizophrenia. 

Allie receives a lot of support from her own personal work community. Her boyfriend also serves as a source of support, even when it is hard for her to ask for help with paranoia. She still has hard days, though, because schizophrenia is unpredictable. When she has such days, Allie just “deals with it.” She reasons with herself that things cannot always be negative, so she has to make the best of it; she gives herself pep talks to get through the hard moments. A hard but victorious moment she encountered came about a year ago when she overcame fear and got on a plane to visit her boyfriend in Hawaii. Schizophrenia is “ruled by fear,” so surpassing her fear was the best feeling for her.  

Allie comments on the unpredictability of schizophrenia: 

When she first publicly disclosed her mental illness, it came out as an apology to her readers; she was an author, but her online presence had slipped for several years because of all she was going through. When she wrote the blog post sharing about her diagnosis, people “came out of the woodwork” to support her, which was surprising for Allie.  

Before she published her first book, Allie had never written anything. Though she read a lot, she was struggling to find books that she could actually connect with. So she decided to write her own. It was a paranormal romance, and her friends encouraged her to publish it. Since then, she has written more books and has had articles in magazines, including Women’s Health.  

Now, a typical day for Allie begins with waking at around six in the morning, which often requires at least five alarms to be set. She then goes to the office, where she works 10-12 hours; if she does not spend that much time at the office, she takes her computer home to continue working. When she is not working, Allie spends time with her boyfriend and their two cats and one dog. She also tries to make time for writing.  

Allie’s dreams for the future revolve largely around her desire to continue helping people. She wants to be able to talk to people about their struggles and encourage them to keep going. She also dreams of working to transform the language that the media use, so that there is no more blaming mental health for violence; she knows that mental illness does not mean individuals are killers or other violent perpetrators. Allie says that it is very demeaning and hurtful when people, such as the media, make assumptions. Allie dreams of continuing to speak out against assumptions and be an advocate for others with mental illness.  

Allie: My dreams are to help people. I know that everyone says that, but I want to speak to people who are struggling and tell them that they can do it. My case is very rare, I understand. Not a lot of people with schizophrenia can work fulltime in an office and be functional. So, I’d like to help people to do that.   

Schizophrenia has given Allie a life that she would have never had otherwise. She is a writer and speaker. She has been on the front page of the Washington Post. She says that with schizophrenia, her life has character. Allie has learned to be honest with herself, and she encourages others to be self-aware and understand that it is fine to ask for help. Allie also advises individuals to try to avoid stressful situations when possible, and to work to “back off” the triggers that may cause stress. She also emphasizes the importance of discipline in living with schizophrenia, from the type of food a person eats to the thoughts they have.  

Listen to Allie talk about some her opportunities because of schizophrenia here:

Allie decided to participate in The Schizophrenia Oral History Project because it is important. She wants to encourage people to know that it is okay to tell the truth, and to share that they have schizophrenia. She thinks that TSOHP provides a safe place for people to talk about their experiences, and to encourage others to join the community. Allie says that with more people speaking up, the likelihood of stigmatization will decrease.  

Rebecca Chamaa is a 50-year-old Caucasian female currently living with her husband of 18 years in San Diego, California. She is a lifelong learner and writer.  

Rebecca grew up as a happy child, the youngest of her family. She believes she started having more problems than her peers when she was in high school, and thinks these problems may have been a precursor to her illness. Despite some problems, Rebecca continued studying until she completed college with a Bachelor of Arts in Liberal Arts. She attended graduate school for a time and took additional courses on leadership as well as various types of writing.   

Her employment has been in a few different sectors, from working in a library to being a marketing coordinator. Most of her career thus far, however, was spent as a social worker. She worked for the state of Washington in addition to working with people who were elderly or experiencing homelessness.  

When Rebecca was 28 and employed as a social worker, she experienced her first psychotic episode following a traumatic event. The episode itself included paranoia, and she became afraid to smoke or eat because she was worried that the cigarettes and food were poisoned. She was unable to sleep, her weight dropped, and her paranoia increased. Since she lived alone, this continued for several weeks before members of her family intervened. They took her to different hospitals in hopes of getting her admitted. However, because she was a social worker and still able to think somewhat rationally, she knew how to respond to the assessments she received. While she told her family about the paranoia and delusions she had, she did not disclose these to the people assessing her. When she became severely psychotic, Rebecca finally agreed to enter a psychiatric facility. Once she was admitted, Rebecca was kept alone, away from the other patients, for about a week until medication took effect.  

Hear Rebecca describe her first episode: 

After this first episode, Rebecca received a diagnosis: bipolar with psychotic features. She was prescribed medication, but Rebecca admits she would waver between taking and not taking the medicine. She says that like many others with a recent diagnosis of a mental illness, she had trouble staying on her medication. For several years, Rebecca would go on and off her medication, as well as in and out of psychosis. Then, she had a “terrible” psychotic episode and began hearing voices.  

Rebecca: I would go on and off my meds and on and off my meds, so I went in and out of psychosis for several years. Eventually, just after I had been diagnosed—I think maybe a year or two—I had a terrible psychotic episode and I was hearing voices, and I didn’t know what they were. I thought that they were God, I thought that they were angels, I thought that I was being raised by someone. I was very confused by the fact that I was hearing voices, very confused by it. 

Even though the voices confused her, Rebecca clearly heard the instruction to “jump off a bridge.” She drove to the Tacoma Narrows Bridge in Tacoma, Washington, got out of her car, and walked to the edge. As she stood on the edge, a man stopped his car, told her to give him her hand, and pulled her back to safety. Rebecca returned home, where the voices told her to take all of her medication and drive to the house where she grew up. She began to drive across the state, but fell unconscious on the side of the road before she arrived. Once again, a man stopped and called 911, staying with her and trying to keep her awake until emergency responders arrived. She was taken to the hospital, where her stomach was pumped and her heart restarted.  

Since then, she has remained on medication. The only exception came ten years ago, when a psychiatrist told her that he did not think that her diagnosis was correct. His reasoning was that if she truly had bipolar disorder, she would be on a mood stabilizer in addition to the antipsychotic medication she was taking. Because he thought her diagnosis was incorrect, the psychiatrist advised she cease taking medication.  

Rebecca: He said, “There’s just no way you could have this diagnosis. You’re only on an antipsychotic, you’re not on a mood stabilizer, so it doesn’t make sense that you would be bipolar.” So, he took me off everything. Well, I ended up within a year, psychotic for six months, six long, scary, horrible months. 

 Following the six months of experiencing psychotic symptoms, she went to a research hospital where she was given a new diagnosis: paranoid schizophrenia. Rebecca believes that this diagnosis is accurate, because while she does have paranoid thoughts and psychosis, she has not had difficulty regulating her moods. She has the “classic” symptoms of paranoid schizophrenia.  From the start of her symptoms until being given an accurate diagnosis, 15 to 20 years had passed.   

Rebecca experiences symptoms on a regular basis that occur during activities of daily living. Some examples of these activities include shopping in a grocery store or eating at a restaurant. Rebecca becomes paranoid around food, and her husband reassures her in such times or uses other “tricks” to deal with these and other daily symptoms. In addition, and though it may not be on a daily basis, she sometimes has a hard time during travel. For example, one time she experienced a panic attack before boarding a plane. As she and her husband were about to board a flight from Florida to California, Rebecca begged her husband to drive her home rather than get on the airplane. Her husband told her that he had to be at work the next day, so even if he wanted to drive her back home, they needed to fly in order to make it in time. Rebecca refers to this experience as an example of her husband’s good nature. She discussed some of his acts of kindness and “allowance” for her illness.  

Rebecca: So sometimes if I eat something, I’ll say, Oh my God. I’ll think, Oh my God, it’s poison. And my husband does all these amazing things. He will eat some of it and he’ll say, No, it’s okay. Or we’ll go out to dinner and I’ll eat—I’ll taste my food and if I taste something in it that I’ve never tasted before, like a spice or whatever, I’ll say, This tastes funny to me. And my husband will know immediately that I’m having a problem… Yeah, he’s just really good with it. He handles it better than anyone I know, because sometimes I just can’t—you know, it’s not my fault that I feel scared or paranoid or anxious, and he never blames me for that, and I—I can’t imagine—you just can’t imagine how lucky I am. 

Rebecca shows gratitude for her husband as a consistent source of support. They met while living and going to the American School in Egypt. His family was escaping the war in Lebanon, and Rebecca’s stepdad was a civil engineer assigned to irrigation projects in the Middle East. Rebecca recalls they did not necessarily like each other in high school; he had other girlfriends, and she had other boyfriends. About 15 years after high school, those who had gone to the American School began to connect through the internet. They planned a party in Las Vegas, which is where she and her husband met again. It was “love at first sight.” Within a few months, Rebecca, who lived in Washington at the time, moved to California where he lived. They had been happily married for 18 years at the time of the interview. Through their marriage, Rebecca and her husband have handled her symptoms and treatment as a team. They go to the psychiatrist together, and her husband fills up her medication packets so that it is all planned for the week. Rebecca hates going to the doctor, so her husband goes with her when she gets regular blood tests. They share the “burden” so that it is not all on one person’s shoulders. Perhaps most importantly, Rebecca’s husband never blames her for her illness or the symptoms that she experiences. 

Though she has great support in facing her symptoms, they have been bad enough to impact her work life; she left her last job due the high level of stress. After taking some classes, Rebecca’s primary occupation became writing. Since then, she has had an article about living with schizophrenia published in Good Housekeeping, Woman’s Day, and Dr. Oz. She has written “commercial articles” for Glamour, Good Housekeeping, and Woman’s Day; these articles are about things such as relationships, marriage, or life in general. In addition, some of her poetry has been published, and she recently had a literary article accepted to Luna Luna magazine.  Rebecca also wrote a book entitled Pills, Poetry, and Prose—Life with Schizophrenia, though she notes that her writing has improved since its publication.  Make sure to take a look at her work, some of which is linked at the end of this article.

Listen to Rebecca discuss her work:  

Rebecca has a mentor who is working to help build up her freelancing career, with the goal of getting off disability. Rebecca thinks that she could probably work a low-stress job, where people understand and accept her illness. However, if there is no such job with a supportive environment, Rebecca thinks that her career of freelance writing is the best choice for her. Though it can be a difficult occupation, it is a good choice for her because she can do it from home, where she can nap, go for a walk, or take more medicine if needed. Recently, she received her first paycheck for writing, which was an exciting moment.  

Her blog (ajourneywithyou.com) shows changes and shifts that have occurred within Rebecca throughout the years. Rebecca says this is due to her study of the history of mental illness, women and mental illness, art and mental illness, and statistics about psychiatric care. Due to this research, she has had some changes in her thoughts about the language that is used when discussing mental illness. In relation to this, Rebecca has a bi-weekly column, called Bright Lights in Dark Corners, in a literary journal entitled Drunken Boat. It discusses the intersection of mental illness and art.  

Though Rebecca is now open about her mental illness through writing or discussion, it was not until a few years ago that Rebecca publicly shared her diagnosis. She and her husband kept it a secret for the majority of their marriage until that point. The decision to disclose was made after much thought and prompting from her psychiatrist (who was quitting her practice) to tell at least one person within her social circle. Rebecca and her husband did decide to tell that one person, and then shared the information more publicly. But the reasoning went deeper than just encouragement from her psychiatrist; Rebecca wanted her husband to be able to share the burden with others rather than have to handle it alone. She wanted people to know about her situation so that he could ask for help when needed. Another reason they waited so long to share is due to the fact that schizophrenia is at the “tail end of acceptance.” While Rebecca feels as if mental illness, especially anxiety and depression, are more accepted in today’s society than in previous times, those with schizophrenia are considered to be the “worst of the worst” when comparing mental illness diagnoses. It took time for Rebecca to feel ready to face possible discrimination, disregard, and derogatory feelings or words that could be aimed at her as a consequence of her diagnosis. 

Rebecca discusses her decision to share about her mental illness here: 

Initially, when she began sharing about her illness, Rebecca says she was “defensive.” She describes herself as being bold and fierce during the process. Her attitude has since changed, because people were kind and supportive. Still, when she brings up schizophrenia, she feels she can gauge the individual’s level of comfort based on facial expressions. Sometimes, people change the subject or shut down the conversation and walk away.  

Rebecca: I was really defensive at first. I came out kind of bold and angry—not angry really, I wasn’t really angry, but I came out pretty fierce. Like, I don’t care what you say. This is how it is and this is my life and you can say what you will and you can leave us if you want to leave us, and you can go away if you want to go away, and that’s—whatever, we’re prepared to deal with the consequences. And now I feel differently about that. I feel like—so coming out, people were—people were nice to me, people were supportive… I can usually tell by the look on their face if that is something they can handle and want to proceed with or if they would just as soon change the conversation and get up and go to a different table or talk to someone else instead, which happens.   

Due to the encounters she has had when disclosing her diagnosis, Rebecca has been able to consider why individuals may react the way that they do. She thinks that when people learn that an individual has schizophrenia, or witness a psychotic episode, there is the tendency to “dehumanize” that person. Personally, she tackles this issue by telling people that she is someone’s baby, and in so doing, “humanizes” herself. Rebecca recognizes that it may be easy to view an individual just as their illness or to see them as less human. She believes in the power of humanization for the reduction of stigma related to mental illness. When people view another as a neighbor, a woman in a grocery store, or a peer in class, perhaps we can destigmatize mental illness.  

Rebecca herself has altered the perceptions that some people had of schizophrenia before interacting with her. Whatever an individual’s judgment of her may be, she “puts a face” on schizophrenia. This has helped to diminish the stigma surrounding the illness. Rebecca thinks that if more high-functioning people with schizophrenia are seen, the face of schizophrenia can be changed.  

Rebecca: So I feel like telling people that I have schizophrenia is important when they can see me and they can look at me in the eye and they can go, Wow, this person who is talking to me, who is coherent, who is dressed—I don’t know how I dress. [laughter] But, you know, I’m in clean clothes, whatever, I’m dressed. But whatever their judgment of me is whatever, is [This person] has schizophrenia and that’s not what I thought schizophrenia looked like. That puts a face on schizophrenia that is an unusual face for most people. When they think of schizophrenia, they don’t think of me usually, and although it’s common. 

Rebecca’s view of “humanizing” mental illness impacts her belief that the voices of those with mental illness are more important than those of the “experts.”  She says that a lot of people have the tendency to “put feelings” on individuals with schizophrenia that do not match what those with the mental illness truly feel. For example, Rebecca says that some might assume that those with schizophrenia view their lives as too hard to live, or wish that they had a different life. Rebecca wonders how those people, without mental illness, would know. Personally, she acknowledges the fact that she indeed has schizophrenia, but also has a beautiful and amazing life. Thus, the feelings that other people “put on” her do not necessarily ring true.   

Therefore, when others ask Rebecca to share or write about schizophrenia, she does because she feels that it is important to use her voice to do so. However, she feels perhaps greater connection with other people when she writes articles about other things, like marriage or health. Again, Rebecca relates this back to the “humanizing” effect; there is a sharing of experience that allows other people to see her as a whole person rather than just someone with schizophrenia. Some of the articles Rebecca writes illuminate the common ground of many people.  

Though schizophrenia is hard to deal with, Rebecca knows that her life is valuable and beautiful. She recognizes that there are things that are hard to deal with, but that schizophrenia is her “set of problems.” She is willing to deal with that. Yes, it can be extremely difficult and terrifying, but Rebecca is just happy that she is alive. She remains grateful for each day.  

Listen to Rebecca describe why she is grateful:  

Gratitude is in Rebecca’s nature. As a Christian, she says that she is “blessed” rather than “lucky.” In recognizing blessings, she and her husband are able to help other people, some of which may be in a similar position to Rebecca. For example, they may encounter individuals with a schizophrenia diagnosis that just looks different from hers. She says she also feels grateful when she considers that she has a home, someone who loves her, and other luxuries that others with the same diagnosis might not have.     

With this gratefulness, Rebecca looks to her future with hope. Rebecca hopes she can increase her collection of writings. She wants to create a bigger body of work about things other than schizophrenia that can serve as a connection between herself and other people. She would also like to be a peer support specialist – a position that she applied for – so that she can give back to people who share similar experiences. Rebecca desires that she and her husband have many more healthy years together, and are able to retire and travel the country, enjoying each other’s company along the way.  

Rebecca decided to talk to The Schizophrenia Oral History Project because she wants to combat stigma and work to break down barriers, in part by showing common ground between herself and others. By sharing her story, she hopes to help other people who are considering disclosing their mental illness to others. She also shares her love story to give others hope that they do not have to be alone.  

Hear Rebecca describe why she chose to participate in the Project: 

Rebecca created a workbook called “A Guided Mental Illness Workbook and Journal,” and it can be purchased at Amazon, Target, Walmart, and Barnes and Noble. Here is a link to the amazon page:

Read some of Rebecca’s writing here:  

Rebecca’s blog: https://ajourneywithyou.com/

Rebecca’s article in Glamour Magazine: https://www.glamour.com/story/this-is-what-its-like-to-live-with-paranoid-schizophrenia

Rebecca’s article in Byrdie: https://www.byrdie.com/mental-health-beauty-routine

Link to Rebecca’s Medium articles: https://medium.com/@rchamaa

Rebecca’s article on The Mighty: https://themighty.com/2016/02/5-ways-having-schizophrenia-has-made-me-a-better-person/

Rebecca’s article in Teen Vogue: https://www.teenvogue.com/story/anthony-scaramucci-paranoid-schizophrenia-insult-offensive

Katie is a 37 year old Caucasian female with a love for cats and a connection to color. She lives independently with her two cats in an apartment in St. Johnsbury, Vermont. Katie is studying business at a nearby college, where she currently takes four classes.

Katie grew up in a suburban neighborhood of Long Island, New York, where her stepfather was a family court judge. In her community, a neighbor who lived across the street had schizophrenia. Katie recalls that the whole block knew about the diagnosis, and would make comments about the neighbor’s “bizarre” words and actions. From such observations, Katie learned that schizophrenia was a scary illness, but at the time, of course, did not have any idea that it would affect her. When she was 17, Katie’s mother, who she describes as abusive, told her to get out of the house.

It was not for a few more years, though, that Katie began experiencing distressing changes. Katie was 22 when the first of her symptoms became noticeable, and when she began to observe such major changes in herself, she thought of her previous neighbor, and became terrified that they were due to schizophrenia. Even though she had some insight that something was wrong, Katie decided to join the Army. She chose to do this because she was unable to work elsewhere, but she needed to pay her bills and she wanted to eventually be able to pay for college. She reasoned that if she had a job, the symptoms she had noticed would not persist, and she would be okay.

Katie: I was like twenty-two, twenty-three years old. I could not hold down a job. My ability to cope all of a sudden started going away, and I was mysteriously falling through the cracks. I would stay up all night with racing thoughts. I would have a really intense writing problem. I was—I had really strange hallucinations, broken speech. Yeah. And in the middle of it I joined the army thinking, maybe I just need a job. I’ll just ship out and I’ll go away and everything’s going to be fine. I’m going to be okay.”

In the initial stages of joining the Army, she was asked the routine questions about physical and psychological health. Katie answered that she did not have a mental disorder since she had not yet received an official diagnosis. She was able to complete Basic Training, and it was not until her advanced individual training that others noticed that she was ill. At that time, one of the most obvious symptoms was that she did not talk. Once others began to notice, she was given a direct order to undergo a psychiatric evaluation. Following this, she was medically (honorably) discharged; it had been almost a year since she had joined the Army. Her first hospitalization was due to a direct order from the United States Army.

Listen to Katie describe her first hospitalization here:

As time passed, Katie’s symptoms became worse, and the change “was like night and day.” She began experiencing psychosis and visual and auditory hallucinations. One specific terrifying hallucination she had was of a man coming into her home and attempting to join her body. Other symptoms included seeing colored patterns and becoming obsessed with writing, which resulted in compulsively writing inside of her clothes. Sometimes, water from the shower sounded like African drum music. Katie also became paranoid of people, causing her to feel suspicious and unsafe. She was so nervous from her thoughts and hallucinations that she would not eat, which resulted in major weight loss. Symptoms resulted in a lack of ability to perform daily functions.

Katie: I had really intense visual hallucinations of a man—I was in an apartment by myself—I had very intense visual hallucinations of a man trying to join my body, where it was almost like he was trying to leap into my body. It was absolutely terrifying, and at that point, I was devastated. I could not understand what was going on with my brain. I was terrified. I could not—I could not make sense of anything. I couldn’t function. I couldn’t work. I couldn’t do anything. I couldn’t hold down a job. I was terrified to interact with people. I had really strange paranoias and that—I just kept throwing myself—even after I was discharged from the army, I kept throwing myself in the hospital. I literally would just, you know, I’d find a hospital and I’d go to it.

Katie voluntarily committed herself to the hospital on more than one occasion, largely due to her feelings of being unsafe on her own. She also knew that she could benefit from having people focused on helping her through her struggles in a compassionate way. When she finally received a diagnosis from her doctors, they were conservative, saying that she had “bipolar with psychosis.” She was given medication and noticed improvements in her ability to function. It also diminished the hallucinations and the “strange” thoughts and behaviors. However, the medication had a negative side effect of excessive weight gain. Even amidst her hospitalizations and use of medication, Katie greatly struggled to accept her situation; she continued to hope that it would all go away.

While her symptoms did not “go away,” Katie sometimes felt as if she could function well, and would periodically stop taking her medication. One year, she moved to Colorado with a significant other and stopped taking her medications. While there, she was able to get a job. However, even as she steadily worked, she had a difficult time interacting with her coworkers. She experienced withdrawal from social situations as well as frequent hallucinations. During that period of time, Katie felt as if she was unable to speak up for herself because she did not know exactly what was happening, nor did she have a name for what she was experiencing.

Hear Katie describe her time in Colorado in these two segments:

Later on, Katie met her husband, and they got married when she was 26. Even though he knew Katie had “something going on with [her] brain,” he still wanted to married her. He was in the Army, and after their wedding, he and Katie moved to North Carolina, since he had been sent to Fort Bragg. In the apartment she and her husband rented, Katie found herself sleeping a lot because of the heavy dose of medication she had been prescribed by a psychiatrist. One day, when she was getting in the shower, she clearly heard a man’s voice saying her name: “Katherine.” She became fearful, angry, and devastated, because it was another reminder that something was wrong. When her husband returned home that night, he took her to the hospital. This experience was a turning point for Katie; she could no longer deny that something was going on with her brain.

It was also a turning point in her marriage. Now, Katie realizes that while some people with schizophrenia are able to be married successfully, some are not. She states that it is a very difficult disease, making relationships and especially marriages not feasible at times. This held true in Katie’s marriage. Though he worked hard, Katie’s husband struggled to love her, work, take her to the hospital, and meet with doctors without additional support for her care. Occasionally, he came to tears because of Katie’s delusions. Katie once believed him to be in the CIA and could not be convinced otherwise. One night, she thought that he would be killed by other members of the CIA, and that they were tracking him through his wristwatch. So, she took his wristwatch, placed it on herself, and rolled her husband’s body to the floor. She then covered him in blankets, thinking that if they were planning to kill him, they could kill her rather than him. Through this delusion and others, he “felt like he lost his wife.” The extreme stress and emotional turmoil that Katie’s husband encountered culminated at the point of suicidality. He ended up leaving, and they were later divorced. Looking back, Katie feels empathy for the impact her illness had on her husband. She hates that she could not make her delusions or other symptoms stop; though she was taking medication, the symptoms were persistent.

Katie: He was a beautiful young man and a very good heart, and he could not believe that my brain—he was actually horrified about the fact that my brain literally did not work the way that other people’s brains work… He was not—he really—he really was horrified, just like probably a lot of people would be. And he did leave me eventually because he burned out. He went through—he didn’t want to leave, but literally, it started to affect his sanity level and he became suicidal because he could not handle the fact that—you know, there was very little support. I was very delusional during a lot of our marriage and it was hard. It was really hard. When he walked out, it was—it was—it was devastating.

After Katie’s husband left, she experienced a period of homelessness. She lived on the street, at times sleeping inside pieces of carpet she had found. She ate out of garbage cans and spent time at homeless shelters. She lived on the streets for two to three months. Periodically, individuals from churches would find her and take her to the hospital or pay for her to stay in a motel for a few days or a week. Following release, though, she would be homeless once again. This period of time was Katie’s lowest, causing deep trauma.

While homelessness was horrific and traumatic, the events of Katie’s worst memory began with a shooting outside of her apartment in Jacksonville, Florida. This triggered the “most demented psychotic episode” she had ever experienced. After she heard the shots and saw the chaos, she ran outside to beg the emergency responders to send an ambulance for her as well, saying she needed help. She began screaming at a police officer, who, perhaps due to lack of knowledge of the symptoms of mental illness, placed handcuffs on her and put her in the back of the police car. At that point, she was unable to speak intelligibly. Katie was driven to jail, where she stayed for three weeks, including some time in solitary confinement. Looking back, she thinks that the officer believed her to be using drugs, and says evidence to this effect was even turned in, though she did not have possession of any illegal drugs.

Katie: I went out to the ambulances and I begged them, “Please, I know the ambulances are coming for bodies and stuff, but can you please send me an ambulance? I’m losing my mind.” And nobody listened to me. The ambulance guy was just like, “Just go see the police officer over there,” and I went to see a police officer and I was just screaming things, crazy, losing my—like a lunatic, and he put me in cuffs and threw me in the back of the squad car. I was in the middle of the most acute psychotic episode I’ve ever experienced in my life. I was screaming, I was claustrophobic because now I’m in cuffs, I’m in the back of a squad car. I’m doing nothing wrong but being mentally ill. And he turns around and he says, “What are you, on drugs?” And I’m like—I had no ability to speak properly.

While in jail, she continued to have horrible hallucinations, with at least one causing her to scream and bang the cell door repeatedly. A female officer burst through the door and held her hand over Katie’s mouth until she thought she would suffocate; Katie states that she actually thought that she would die. She was then sprayed in the face with mace. Katie was released without conviction, but as described, her time in jail was extremely traumatic.

Katie shares about her time in jail here in the following two segments:

Finally, when she was 31 years old, though her symptoms had been the same for many years, Katie was told that she has schizophrenia. She sometimes wishes that she had been told from the beginning that she has schizophrenia; she wonders if her treatment might have been better and more aggressive.

Nevertheless, Katie experienced something close to relief when she was finally told that it was indeed schizophrenia. There was a word that defined her experiences, and there were methods of treatment. However, her symptoms did not cease. Once, she ended up in a stranger’s home at five in the morning while in the middle of a delusion that she was being chased and would be killed. In response, she ran into a house asking that the resident call the police. Emergency responders arrived, and she was taken to a hospital in Greenport, New York, where she remained for about three months. There, she felt the support and acceptance that she recognizes as being vital. At that time, when she was in her early 30s, she began to feel hope from the fact that others knew what was going on and were able to provide help. There, she felt as if she were truly cared for, and this signified the beginning of her acceptance of the fact that she had an illness.

Katie: When I approached my thirties—when I was in my early thirties, there started to be hope. The hope that I had hoped for, that my illness would go away—well, okay, my illness was not going to go away, but there was hope for the fact that there were people that actively knew what was going on and they were able to help me.

Though Katie did begin to feel hope and acceptance, she continues to experience delusions and hallucinations. No matter how much medication she takes, she still has visual hallucinations of people that she refers to as the “spirits.” She can tell that they are hallucinations rather than physically-present individuals based on their colors and pigments.

Some of Katie’s visual hallucinations are reoccuring people. One such person is “Michael,” whom she finds comfort in sees almost every day. Katie feels as if she sometimes has deeper relationships with the spirits than physical individuals. She connects with the spirits because they are able to be there for her in emotional ways that actual human beings are unable to be. She realizes that there are medications that could probably erase the spirits, such as Michael, but she is unsure if that would be sad for her or something that she could accept. In addition to seeing the spirits that she is accustomed to, Katie sometimes hears voices of others; often male, but most recently, female.

Listen to Katie describe her relationship with the spirits in these segments:

In addition to visual and auditory hallucinations, Katie also continues to sometimes experience paranoia when she becomes convinced that others are conspiring against her. As she was trying to leave for class one day, she became convinced that her apartment manager wanted to kick her out of the building. As a result of this paranoia, she entered into a catatonic state for hours.

Interwoven through her continuing experiences of hallucinations and paranoia is the ongoing struggle of trying to discern what thoughts are rational and which ones are not. Katie says it’s hard to “juggle” not knowing what thought, delusional or rational, might occur in any given moment. She also must deal with the constant reminder of her illness. Katie says that it is terrifying to realize that everyone else in the world knows a reality that she does not; it is a realization of just “how sick your brain is.”

Katie: And it’s not just your doctors and nurses, it’s that everybody else in the world knows a reality that you don’t. When you have to reject the reality that you’re convincing yourself is true, when you have to reject that within yourself and trust something that is not inside of yourself, then you realize at that moment just how sick your brain is, and it is a very terrifying—it’s a very earth-shattering reality.

Katie is not powerless in the face of her symptoms, however. She has been learning to think back on the individuals whom she has had a loving relationship with and who have helped her “reality test” in the past. Then, in some instances, she can use this thought process to gather insight into situations, which helps her work through paralyzing fear or even catatonic states. Though the voices of her auditory hallucinations can say scary or persecutory statements, Katie is able to “flip [them] off,” and they no longer cause her to be in a state of terror. Through experience and the assistance of medication and therapy, Katie is now mostly able to have auditory or visual hallucinations without as much of a reaction as she used to have in the past.

Spiritual beliefs grant Katie some reprieve. Sometimes, this, too, takes on a slightly delusional aspect. At times, she has had wonderful experiences during which it seemed as if Jesus were walking with her, dancing with her, or just spending time with her. She also believes that angels have been sent to her to keep her company. These spiritual occurrences have given Katie some elements of comfort. Sometimes the only comfort she has comes from the manifestations of her illness, like her times with Jesus. Another reprieve for Katie is through laughter. She says that some of the things she experiences are so absurd that she just has to laugh.

Katie’s struggles, successes, hardships, and joys have all enabled her to speak empathically about the needs of individuals with schizophrenia and the stigmas revolving around mental illness. When Katie began to have noticeable symptoms, her family members became terrified of her. She says that what she truly needed at the time was people who could have compassion and help her, and she believes this to be similar in the situations of other individuals. She also knows that general support is critical for individuals with schizophrenia because they, and others with mental illness, try to communicate but are not often supported or understood by others. While individuals with a diagnosis need time to be alone, they also desperately need a solid community of others that accepts them for who they are. Unfortunately, Katie believes this is difficult to come by. She recognizes that it is a “precious thing” to have both a diagnosis of schizophrenia and a loving relationship with at least one real person.

While it may be a difficult relationship to foster, Katie states the importance of finding a safe person to talk to about delusions and paranoia. This may be a scary process, but Katie says that it is much scarier to experience a person that is not safe to tell. Katie states that individuals with schizophrenia need help, especially during delusions. People can be very helpful to individuals with schizophrenia in delusional states, if they realize it. Katie describes the need that individuals with schizophrenia often have to cry out to others and tell them about the thoughts that make them suffer; they want to ask others for help in this. In her experience, it is deeply appreciated if an individual sits down with her and kindly explains reality during any given moment.

Katie also calls for improvements on the societal level. She knows that individuals with schizophrenia desperately need a loving and trustworthy society that does not make it even harder for them to perceive reality.

Katie: …this is why stigma needs to be busted so bad. This is why people need to stop seeing their schizophrenic relative, their schizophrenic parent, their schizophrenic kid, their schizophrenic friend, their schizophrenic schoolmate, their schizophrenic partner—they need to stop seeing them as the boogeyman and stop being afraid of them because that person with schizophrenia desperately—in a delusional state, you could be very helpful to them. They need you to help them. The worst part is the schizophrenic is terrified of people in society, but what a person with schizophrenia needs the most is society. But a trusting, loving, trustworthy society. One that’s not going to play games with them. One that’s not going to make things hard for them to perceive reality.

Katie calls for an end to the stigma. Firstly, she knows there is a stigma that individuals with mental illnesses are violent or are often responsible for crimes. This is not true. She wants it to be known that the majority of people with mental illnesses are more often the victims of crimes rather than the perpetrators, due in large part to their vulnerabilities. Finally, Katie has noticed that many people “bully” the homeless, because they have a misunderstanding of the nature of homelessness. They might not understand why the individuals who are homeless do not work or call their families for help. Having experienced homelessness herself, she knows that there are many factors that contribute to this situation. Katie desires better awareness of this issue, especially in its relationship to mental illness.

On a typical day, Katie attends class and spends time at home. First, she eats breakfast and then takes the bus to the college that she attends. She goes to class, mostly keeping to herself, but sometimes talking to her professors or another student or two. She then returns home on the bus and spends time with her cats. Katie makes dinner and reads the news or does school assignments, if she feels well enough. Recently, watercolor painting has become very important to Katie. She has attempted to draw Michael, one of the people that she sees through hallucination, thinking that perhaps if she is able to draw him, she will not see him anymore.

Due to the struggles within her mind, it is sometimes hard for Katie to focus on her education. Not completely deterred though, Katie continues to work hard to receive the best education that she can. One of her biggest motivations for this is her desire to never experience homelessness and its deep devastation again. She is now secure in an apartment of her own, where she enjoys time alone; she describes herself as a homebody. She feels grateful for the apartment she has, because it is an affordable, safe place for her and is now fully furnished. Having shelter is a “joy,” and so is the ability to have the food that she does.

Telling her story to The Schizophrenia Oral History Project was hard because she does not know if she can offer anything to people other than telling them how it is. Katie also says that it is hard to talk about because it deals with buried emotion that she does not want to remember at times. However, she decided to participate because she thought her story might help someone else.

In regards to her diagnosis, Katie says that there “are worse life sentences.” She says that if this is hers, she thanks God. Even though it is hard, she will manage.

Listen to an expanded version of Katie’s message in these segments:

Andrew K is a 29 year old Caucasian male, currently living in Harrison, Ohio. He holds a degree in history from Mount St. Joseph University in Cincinnati, Ohio. He enjoys playing his guitar and listening to other music. Andrew is a thoughtful man who loves learning and engaging in critical thinking.

As Andrew describes it, mental illness has always played a major role in his life. When he was younger, six or seven years old, he was tested for ADHD or ADD. Though he did well in school, he lacked focus. He was seen by a psychiatrist, and he answered her questions with the answers he thought she would want. He says that he had difficulty with low self-esteem. Eventually, he was prescribed medication to treat ADHD, and later, antidepressants.

Years later, when he began college, the severity of depression increased. Andrew thinks that this was due to new stressors that occurred with beginning college. It was during this stressful time that Andrew attempted suicide. The period following his attempt was “terrible.” Shortly thereafter, he was diagnosed with bipolar disorder, and spent time in the hospital. Later, he learned that his diagnosis meant that depression and mania could happen at the same time, or there could be a rapid switch between the two.

Andrew: Mental illness played a part basically when I went to college; there was a time when much of my life took a downturn. I guess I was dealing with a lot of new stresses that I normally never would have dealt with, and I got severely depressed and I—I attempted suicide. It was surreal. After that you just don’t really feel like you’re alive…It was just terrible.

Andrew begin to take antipsychotic and mood stabilizing medication, though he did not think the bipolar diagnosis “fit” him. He first took lithium for a short time, then began the medication Depakote, which causes weight gain. Unfortunately, the medication did not seem to help, and Andrew continued to experience depression on a regular basis. After a while, when he was 25, he stopped taking his medication.

About a year later, when he was 26, Andrew started to experience delusions. They began as rather grandiose, he says, when he thought that he had a photographic memory and an IQ of at least 160. At the time, when Andrew would tell people such things, they took him at his word. His delusions did not stop there, however. Rather, they became more violent. Once, his father gave him food, and Andrew immediately felt his body lose all of its energy, almost as if it were sinking. After this incident, he felt as if his parents were attempting to poison him, so he began to no longer trust them.

Listen to Andrew describe the beginning of his delusions here:

At one point, cable television was being installed in the home where Andrew lived with his parents. The process involved a lot of banging, and Andrew’s mind began to believe that the Swedes were trying to attack him. It was a very scary situation for him. Another time, he became convinced that his boss was plotting against him by changing his work to make it appear incorrect. He also began to experience “conversations in his head.” His employer advised that Andrew go to a doctor’s office to be tested. While there, he thought that he was being tested to receive a promotion to become a company’s CEO. The testing was extensive, and included ink blot, pattern, reaction, and other tests. Following this, his employer placed him on forced leave.

Andrew: Eventually—I mean, eventually my work forced me on med—on leave.
Interviewer: How come?
Andrew: I was basically saying that the person that was my boss that was—I was saying was plotting against me and that she was changing my work to make it look like I was not doing it correctly, but really I’m pretty sure it’s just that having voices and trying to do work is counterintuitive because it takes your attention to nothing, like you cannot focus at all.
Interviewer: So you were hearing voices at that time?
Andrew: Yeah, but you don’t really think of them as voices. Like you just think of them almost as conversations. For me it was like having a conversation in my head and it was, you know, hopefully positive but usually it was negative.

After being placed on leave, Andrew began to drive. While he did this in part because he thought that his parents were coming after him, the driving also provided relaxation. It was not until he ran out of gas that he returned home. Once there, his parents told Andrew that they were scared of him. So Andrew locked himself in his room, only leaving to get food once his parents left for work. This continued for about two months. Eventually, Andrew drove himself to a psychiatrist appointment. He thought he was being followed by his uncle, though, so he continued to drive. He made it all the way to a Walmart in Kentucky before running out of gas. Not knowing what else to do, Andrew called the police. When they arrived, he was experiencing delusions and told the officers that he was only 17 and that his parents had poisoned him. Andrew says that in response, the police officers gave him the option to either be driven back to his parents’ home or to a mental hospital. He chose to be taken to a hospital, thinking it was the better option for him at the time.

Hear Andrew describe his interactions with the police in these two segments:

When Andrew and the officers arrived at the hospital, he was turned away, being told that he would only be admitted if he were homicidal or suicidal, which he was not at the time. As an alternative, the officers took Andrew to a homeless shelter, where he stayed for a week. At the end of his stay at the shelter, officers arrived, placed Andrew in handcuffs, and took him to a state mental hospital. It was then that Andrew became aware of the fact that he was a ward of the state of Kentucky; his parents had completed the process to make it official. His stay at the mental hospital began with a day spent in an old facility with tiny sheets on the beds and puddles in the bathrooms. While there, Andrew refused to take medication. The very next day, though, he was transferred to a new hospital, which was nice in appearance. Even so, Andrew observed fights almost daily. One person died at the hospital, and Andrew was questioned to determine if he had witnessed anything related to the death.

After a week spent in the state hospital, it was determined that Andrew was not a harm to himself or to others, and documents were signed stating that he could leave. Though he was free to go, no one picked him up. Even if someone had been there, Andrew would not have gone with anyone, because he believed that the people he knew were involved in schemes against him. Thus, he stayed at the hospital for a total of three weeks, at which point he called his parents. When they arrived to pick him up, they were led into a private room, where they were told Andrew’s diagnosis: paranoid schizophrenia.

Andrew: But I believe after one week they signed me where I could leave, saying that I was no harm to myself. But no one would either take me from the place or no—like I would not go to anyone that I knew because I thought they were all part of it. So, I was there for two more weeks, so three weeks total. Eventually, I called my parents. I don’t know why I did because I was so scared to death of them.
Interviewer: Still scared.
Andrew: Yeah. So I called them because I gave up.
Interviewer: Had you received the diagnosis of schizophrenia at this point yet?
Andrew: Yeah. Right before I left the hospital, the day I left, we were sat down in a private room and they said, “We think he’s paranoid schizophrenic.” I honestly I had no clue what that meant which is really weird because I learned it a long time ago. So to me, I remember like being in my room just crying because I would think it meant something different.

Even though he had been released from the hospital, paranoia and delusions persisted for Andrew. A few days after returning home, he believed that his parents would kick him out of the house unless he made chocolate pretzels. Looking back, Andrew does not understand why he was released from the hospital and feels as if he was not in the correct state of mind upon his release. Though he read a 400-page book about schizophrenia following his hospital release, Andrew does not feel as if he was given much information about schizophrenia, and he began to use his own experiences to construct a definition of the diagnosis and to reason why his mind had behaved the way it had.

After his diagnosis, Andrew felt pressure to find a new job. He began working at a hospital call center, which was stressful. There were many people, which meant trying to handle many different perspectives. There, his paranoia continued, so he left that job in a state of severe depression. Six months later, he began working at a convenience store. When he was assigned to work the cash register for the first time, he encountered deep fear and anxiety; he was shaking and heard audible voices in his head. Though the employer tried to get him to stay, Andrew left that job as well.

Andrew describes his employment experiences here:

After his attempts at maintaining steady employment, Andrew began to have an increase of symptoms, including hearing voices, paranoia, and stress. His body has physically shaken during times of anxiety and severe paranoia. He continued to be convinced that other people were trying to harm him. One specific instance occurred when Andrew went to a rock concert with his little brother. While there, he became paranoid, seeing the ushers as plotting against him or wanting to tell him to leave. He “stuck it out” as best he could because he did not want to ruin the experience for his brother, but felt worn out for several days afterward. In addition to paranoia, Andrew can become very stressed in different situations, especially those which are new or overwhelming. Even when he takes medication, situations involving high levels of stress can occur, and thus trigger symptoms.

Interviewer: So you noticed that even if you’re taking medication, high stress is going to trigger some symptoms for you?
Andrew: Yeah. It’s—I don’t know. It always starts out the same way. So I start hearing voices and it’s almost like—it’s almost like let’s say I’m driving my car and I hear voices. I actually start talking back to ’em and talking in the car as if they are there.
Interviewer: So you’re talking out loud to the voices?
Andrew: Yeah. It’s really like where I’ll turn my head to it, actually there’s someone there.
Interviewer: Do you catch yourself doing that sometimes?
Andrew: Yeah, and then that’s when I know that I’m really paranoid.

It is clear that Andrew has continued to experience symptoms, even while taking medication. Furthermore, sticking to a regular regime of medication requires a plan; each time he takes the medicine, it has to be done with at least 350 calories in his system. So aside from medication, which requires planning and is still sometimes not the most effective form of treatment, Andrew has discovered new ways to cope with his symptoms. The main way that he combats the stress and associated symptoms is by focusing on each moment and trying not to lose hope; he holds to the idea that something within each moment can by enjoyed.

Such strategies also help Andrew when thinking about his past and future. He does not want to worry about how debilitating his past was or how successful his future may be. Instead, he tries to accept his “now” rather than view himself as a “wildly successful” individual. While he does not discount great success, he feels it is easier to live with his mind in the present.

Hear Andrew discuss living in the moment here:

One thing that Andrew does “in the now” is speak to the popular cultural perceptions and barriers of the diagnosis of schizophrenia. He recognizes that schizophrenia, even the term itself, can be intimidating to individuals; he recognizes that it can be a “deal breaker” for many people. He wants to tell others about his diagnosis sooner rather than later so that if rejection happens, it occurs before he is too involved with someone. Andrew has faced such rejection, often in the form of others making assumptions about him. Once when he was at a bar, he struck up a conversation with another guy, but by the end, Andrew ended up feeling mocked and looked down upon. After disclosing that he had a mental disorder, he was asked if he should have someone watching over him at all times; it was assumed that Andrew would perhaps be harmful to others.

Listen to Andrew talk about the possibility of rejection when disclosing mental illness:

Other times, individuals that Andrew has encountered have not even known what schizophrenia is, or think that it just happens when individuals cannot think correctly, or are “just crazy.” Andrew thinks that some of the lack of knowledge may be due to how popular culture portrays it, as he term “schizophrenia” is sometimes used incorrectly and in ways that are not truly descriptive of the illness. Because words matter, Andrew wonders if schizophrenia could be termed in a different way. He thinks that people should study extensively in order to gain knowledge about such topics rather than holding on to opinions that may be based on misinformation or incorrect definitions or terminology.

Andrew also speaks to the financial barriers that individuals with mental illness face. In America today, those with schizophrenia tend to be at the bottom level of the income distribution. He says that this, in turn, means that individuals buy less effective medication because that is all that they can afford. He says that because of limited funds, it is unlikely that new medications for schizophrenia will be developed because there will be no financial incentive to do so. Furthermore, Andrew identifies that the field of mental health as a whole is underfunded. He uses the example of his psychiatrist’s office: though he identifies his psychiatrist as a great provider, the space could use some necessary upgrades. Andrew has also personally experienced financial challenges as it relates to medication. Though at first his parents had to pay for his medication out of pocket, the expansion of Medicaid has recently allowed Andrew to get better medication with fewer side effects.

Andrew: Right before the Medicaid expansion, you know, I was—my parents were buying medication that was full price without insurance, you know? And I was lucky that only a few years ago, the medication I was taking became a generic, because when it was name brand, I would probably just not take medication if I wanted name brand and I was without insurance.
Interviewer: Makes all the difference.
Andrew: Yeah. It’s like 500 bucks for a prescription a month, and I would basically be homeless probably. Just because if I don’t have medication, I’d just never escape psychosis and eventually my parents wouldn’t be able to come find me, you know? So, I’m glad that when I came in, that’s when the Medicaid expansion in Ohio, so I was very happy about that.

Recently, Andrew has made some changes in his activities. Though he played guitar for about 10 years, he has begun lessons in order to receive specific direction. He plays as much as possible, appreciative of the stress-free activity and relaxation that music and the repetitive strumming of a guitar bring. Another change in activity is his more recent “cutting back” on video game play. When he would play competitively, he would become greatly stressed and paranoid and hear voices, so he is trying to stay away from that.

Andrew also reads a lot; right now, he is reading three books. He hopes that continuing to read will assist him with the next activity he hopes to begin: writing. When he was 25, he did write some. However, he describes the product as a “schizophrenic break,” starting as a story but becoming about schizophrenia. He never completed the project. Though he can be critical of himself and the things he produces, Andrew hopes that things will be different when he attempts to write this time around. He is inspired by Hemmingway’s “smooth and beautiful” writing.

A typical day for Andrew includes a lot of time spent playing the guitar or listening to music. He also spends time watching Hulu. Evaluation and critical thinking are interwoven throughout many of his activities, including his regular sessions with his psychiatrist.

While he does live existentially, as he describes it, Andrew also has hopes and dreams for the future. For instance, he is hopeful that he will be able to find a greatly effective medication. He, like many other individuals with schizophrenia, desires a job, but recognizes that there are many potential issues or complications that could arise. He hopes that in the future, medication will help him achieve the goal of having steady employment in a low-stress workplace. Andrew mentions that a bookstore might be a good place to work.

Andrew would “be happy” with his life if he made a positive impact on others. He especially wants to help his nieces and nephews explore, be curious, and value intelligence. If he can influence at least one person, his life would be well spent.

Andrew: So, I don’t know, I think I would be happy with my life if I –if I made a positive impact on people’s lives. If I push my nieces and nephews to explore, I don’t know, history and all the things that are out there to explore, like to be curious and to be—to think that intelligence is something to be loved and try and be intellectual, you know? That’s why I think if I was able to influence at least one person, my life would be worth spent.

Andrew decided to participate in The Schizophrenia Oral History Project because he has been told that as someone with schizophrenia, he is different than what people assume someone with his diagnosis would be like. He is highly cognitive and intellectual, and he loves learning. But similar to most others with schizophrenia, he also wants people to value him.

Andrew: I don’t have a lot of impairments for my thoughts, you know. I think that the world’s view of schizophrenics is that they’re just people that can’t think right, you know, that—that they’re just crazy from the day that they get diagnosis, and I think knowing that not everyone’s like that—I don’t think most are like that, but, you know, it is a positive impact, I think.

​Timothy Wade feels thankful for the life that he has. He is the father of six children and grandfather to seven. He has three brothers, two sisters, and really good friends. A 70 year-old Caucasian male, Timothy currently lives in the College Hill neighborhood of Cincinnati, Ohio. He enjoys watching sports, eating at his favorite restaurant, and talking. One of the most important elements of Timothy’s life, though, is his faith in God.

As a boy, Timothy attended at least four different Catholic schools, and was in both regular and special education classes, but he was able to earn his high school diploma. When he was 18 years old, Timothy came home from cutting grass to find that his father was lying dead in the middle of the living room floor. He loved his father greatly, partly because he was not very strict, even when Timothy deserved discipline. His father also taught him, by example, a good work ethic. Timothy can easily call to mind the details of the day that his father passed away. At the time, he blamed himself for his father’s death. It was after this that he was first hospitalized.

Timothy: But the fact that I didn’t stay home and cut the grass and my dad was at home and he cut the grass, I felt like he had a heart attack because it was over—it was almost a hundred degrees, and it was so hot, we had to keep taking breaks. And I was only eighteen and my brother was sixteen, and I blamed myself for my dad’s death. So that’s how I went to the hospital.
Interviewer: That’s when things started for you?
Timothy: Yes.

One day, Timothy was getting gas when he realized that he did not have his wallet with him. After his tank was filled by the attendant, he drove away from the station, knowing he had money at home. Before he could make it there, though, he was pursued by the cops.

Listen to Timothy describe the day the police chase happened here:

He was admitted to Longview Hospital, which at the time was called Longview Insane Asylum. Timothy remembers the building being old; warm in the winter but unbearably hot in the summer. The food was cooked by some of the other residents, and he can vividly recall one meal in particular, which consisted of a hard baked potato and tough liver. Timothy might have been released after six months of residing at Longview, but when he was completing his lawn mowing job one day, he “took off.” Given six more months, he ended up staying at Longview for almost one year; three hundred and sixty days, to be exact.

Timothy: The–it was a real, real old building. The ceilings were real high and they didn’t have air conditioning back then, so they never-it was hot-you know, in the winter it was warm enough but in the summer it was really bad. The food was cooked by some of the people that lived there, some of the residents-some of the people that were mentally ill, and the food was terrible. I remember one meal that was liver and baked potato, and the baked potato was like a football, it was so hard, and the liver was tough. You know, that’s the one thing I can remember about that.

Since then, Timothy has been in four other hospitals. Following Longview Hospital, he left for Kentucky, where he went to Eastern State Hospital. He has spent time in Rollman’s, Christ, and Good Samaritan, which he liked the most compared to the others. In addition to a diagnosis of schizophrenia, Timothy has bipolar disorder. He views the bipolar as more of a problem than schizophrenia, because he feels that the bipolar is what caused him to try to commit suicide. He attempted this three times, taking whole bottles of Lexapro, Neurontin, and Tylenol Extra Strength. That was in the past, though, and Timothy’s last hospitalization was a few summers prior to his interview.

Outside of his hospitalizations, Timothy worked. For twenty years, he was in the machine shop business, with thirteen of those being at the same job. He also worked at Sunoco, a meatpacking company, and for his brother who raised llamas.

Hear Timothy discuss his favorite job:

For many years, Timothy balanced his work and relationships. In 1975, at the age of 30, Timothy married his first wife. She was 15 at the time, which meant that a guardian had to sign for them to be allowed to marry. Once married, they had two children: a girl and a boy. In 1981, after a relationship started between himself and the babysitter, Timothy and his first wife got divorced. His second marriage was to a woman 19 years younger than him. Timothy and his second wife also eventually divorced, but he still considers her a friend. Currently, Timothy has a girlfriend. He is hopeful, however, that he might get back together with his first wife, who is now his best friend. They see each other often, as she takes him to church regularly.

The only time that Timothy does not feel like attending church is when he experiences spells where he does not do as well as usual. It is not a sudden shift for him, but rather a gradual decline which culminates with him being “really sick” after about two weeks. When this happens, he does not call his family or friends, and opts to stay home all the time. He is on medication, but that has not been without its struggles. He was originally prescribed a high dose of lithium, but it made his hands shake. They have since reduced the dose, and his hands no longer shake.

Timothy: Now, I was taking lithium, 750 milligrams. Before I got on it, my hands didn’t shake. Now my hands don’t shake. We cut it down to 300.
Interviewer: But when it was higher, your hands did shake?
Timothy: Yeah, and I couldn’t write out checks. I had to have the landlord make out the rent. Well, I had to sign my name but it was so sloppy.

Whether he is able to attend church every week or not, Timothy’s faith in God is woven throughout his life. He says that “a person’s not all the way whole if they don’t have God in their life.” When Timothy lived through his suicide attempts, he began to believe that it was because God still wanted him to live. He feels that God has the perfect love, and that miracles still happen today. He also believes that speaking in tongues is evidence that a person has received the Holy Spirit, and he made sure to choose to attend a church that believes in speaking in tongues and that closely follows the Bible. When Timothy needs encouragement to get through a tough time, he watches Christian TV and goes to church, which help him a lot. In addition, he feels that faith correlates with his well-being, and says that the bipolar will begin to have less of an effect on him as he continues to get closer to God.

Timothy: I’ve been in a lot of churches. This church is as solid as the Bible and it’s more accurate than any church I’ve ever been in. Some of the Baptist churches don’t believe in speaking in tongues. This church does.
Interviewer: And you like that?
Timothy: Well, it’s important, right? I mean, you know, if you get—receive the Holy Ghost. People say the Holy Spirit. It’s a spirit anyway. So, if you receive the Holy Ghost, then the evidence of you receiving it is that you speak in tongue. But you don’t have to speak in tongue to get to heaven, and you don’t have to speak in tongue to get baptized. Getting baptized is good because Jesus did it, you know, but I was baptized in Jesus’ name only, Father, Son, and Holy Ghost.

Even though Timothy holds to his faith in God, his life is not without trying times. In today’s world, many struggle with finding affordable healthcare, and/or getting the insurance they need to be able to pay for routine checkups or procedures. Timothy is no exception. He needs new glasses and a visit to the dentist; he has a tooth that constantly hurts, and needs fillings as well. He has additional health needs, such as wanting to get a routine prostate check and colonoscopy. Timothy receives Social Security and has Molina Medicare, but has difficulty finding health providers that work within the network. He stated that if he had Medicaid, the expense would not be an issue. However, qualifying for Medicaid includes meeting certain income requirements, and Timothy “make(s) too much.”

Timothy talks about healthcare here:

Other than a few physical health considerations, Timothy has been doing really well for the past couple of years, saying that he is usually living at one hundred percent. Typically, Timothy starts his morning by drinking coffee and smoking a cigarette. Once a day he goes out to eat, usually at his favorite chili restaurant. He then returns home and watches television. As a sports fan, he especially enjoys watching the Cincinnati Reds and the Bengals. A few days a week, he spends time at a day program at a local community mental health agency.

Timothy does not have a job at the present time, but says that he wants one. Though he doubts he would get hired because of his age and diagnosis of a mental illness, he has always dreamt about working as a Metro bus driver. In addition to his dream about driving for Metro, Timothy has goals for his future. One such goal is to stop smoking. He also hopes to start reading the Bible and give the church ten percent of his income each month.

Timothy decided to talk to The Schizophrenia Oral History Project because he thought his story would help people. He feels that the more understanding that individuals have about schizophrenia and bipolar, the better the illnesses can be treated. Through sharing his story, providing financial help to those in need, and sharing words of advice, Timothy tries to do good.

Listen to why Timothy shared his story here:

Timothy’s message is one of love and gratitude. He wants people to know that he loves them—everyone. He is grateful to have made it to the age of 70, since others have not been so fortunate. Timothy is adamant about making known the fact that there is much in this life to be thankful for.

Timothy: See, there’s a lot of things to be thankful for.
Interviewer: Yeah.
Timothy: There really is. Even if you don’t believe in God, there’s so many things to be thankful for.

Marshal is a 39 year old Caucasian male living in Independence, Kentucky. He was born on the westside of Cincinnati, Ohio, and spent time both there and in North Carolina before settling in Kentucky. Marshal currently lives with his roommate in a condominium and enjoys movies and family time at the lake.

Marshal was born into a family that includes two sisters. As a young boy, Marshal had a lot of friends, and enjoyed a “good childhood” filled with trips to Kings Island, swimming, and watching movies. In the midst of spending time with friends and participating in various activities, Marshal noticed that he could sometimes be quieter than those around him, and spent time daydreaming. His younger years faced a significant change when his parents divorced, and he and his sisters spent time moving between mother and father.

Listen to Marshal describe his childhood here:

He described himself as sometimes being a good student in school, and occasionally even enjoying it. Other times, however, he struggled with making the grades he wanted and focusing without daydreaming. In high school, Marshal preferred to take honors classes rather than “normal classes,” but he found himself getting grades of C’s. Outside of the classroom, he played basketball for the school team and spent a lot of time reading. After graduating high school, Marshal headed to college, where he began going to parties and drinking alcohol. Still, he felt as if he did not fit in; he felt different than his peers.

Marshal: And I was in and out of college, too. I didn’t meet anybody, know anybody. I was in isolation. I managed to get good grades. I managed to squeak out a two-year degree somehow, but, you know, I was a good student sometimes and sometimes I didn’t, but I managed to do that and—
Interviewer: What was your degree in?
Marshal: Hotels (laughing).

Marshal graduated with a two-year degree, and secured employment. His work was mostly in different areas of the hotel industry, such as helping set up for events, assisting with room service, and even driving a hotel shuttle. Like with his education, Marshal’s work experiences vacillated: he could be Employee of the Month or end up quitting or getting fired.

Though Marshal had, for many years, believed himself to be different than those around him, it was not until he was a young adult with a two-year degree and work experience that he had his first encounter with a psychiatric hospital. In 1998, Marshal was living with his mother in Kentucky and in his words, drinking heavily. It was during this time that he received the diagnosis of schizophrenia.

So, you know, I was there living with her and I was drinking heavy and I started like talking to myself and, you know, it was like in my head, there was like these gangs or something…And there was like a big cult all in my head and everybody was evil and doing evil things and demons and stuff…

One night, the police found him muttering to himself and wandering around a basketball court. They talked to his mother, but Marshal was terrified when, after refusing to go home, he was taken by the police to the psychiatric hospital.

Listen to Marshal’s description of his first interaction with the doctor here:

When he was hospitalized, Marshal was also prescribed medication. At first, he was adamant about not taking it. Once he learned that not taking the medication could result in a return to the hospital, he began to comply. Often, Marshal would not take the medication alone, but would take it as he drank alcohol.

And then outpatient I wouldn’t take my meds, so my mom told on me to the doctor and he told me he’d have somebody pick me up and take me to the hospital if I didn’t comply with it, so I started taking meds. My mom would watch me take them and I used to drink beer while taking meds…

For some time after he was diagnosed and began taking medication, Marshal was drinking to the point of drunkenness. One day, when he had been drinking, Marshal walked into a bank and told the tellers that he was robbing them. After they gave him money, he took a taxi home and was there when the police came. When questioned, Marshal confirmed that it was indeed him who had committed the robbery. His alcohol use was the biggest contributing factor to the robbery; when asked, Marshal said that he robbed the bank when he was drunk.

I did something stupid. I committed a crime. I went by a—went up the street with my bus and I walked in Fifth Third Bank and I told the tellers, “This is a bank robbery,” and they passed me money and then I left and had a taxi waiting and then I went to déjà vu. I—I went home after that and then somebody showed up at the door and it was an undercover cop and he had a picture and he said, “Is this you?” and I said, “Yeah, it’s me,” and it’s just all the drinking and just all the stuff.

After Marshal robbed this bank, he was arrested but given probation. He completed a combination of three alcohol programs of various nature, and once he completed those programs, he went to a homeless shelter. However, Marshal again began to drink alcohol, and shortly thereafter, he robbed a second bank. After robbing the second bank, he spent four years in prison.

Hear Marshal’s description of his second arrest here:

Marshal was placed in a mental health unit where he completed a program and began regularly taking medication again. Following his time in prison, Marshal lived in a halfway house, but was also hospitalized a few times, making for a total of four or five hospitalizations in Kentucky and a few in Cincinnati. He then went to another halfway house, where he did well.

An important support system through all of Marshal’s experiences is that of his family. This includes family members providing him with shelter, helping him find his own housing and a roommate, and spending time with him on trips to the lake. Unfortunately, Marshal’s greatest supporter, his mother, died when he was 26 years old. He commented that the loss of his mother was the hardest thing he has had to face, even harder than the experiences he had while in prison. However, Marshal’s remaining family members continue to be an important and supportive presence in his life, and he enjoys spending time with them, especially with his young niece.

When asked what a typical day is like for him currently, Marshal said that every day is different. Sometimes that involves staying at home spending time with the dogs and listening to music, or going to movies with his roommate. He also participates in Alcoholics Anonymous and some of the opportunities that his group provides, such as volunteering at hospitals. Now sober, Marshal stated that, in addition to Alcoholics Anonymous, his belief in Jesus Christ has helped him with his alcoholism.

While Marshal was at first opposed to taking medication, he now takes it regularly. While he would prefer not to be dependent on medication for the rest of his life, he knows that if he does not take it, he might have an “episode.”

I don’t have any problems with that, so—because I know what happens when I’m not taking them and hopefully there’s not going to be any more episodes…

When asked about his future, Marshal was optimistic.

I’m glad to be out and trying to do good for myself…be responsible, be on my own, you know, work a job and be responsible with money, and you know, that’s big. And one day overcome where I won’t need pills and I won’t need help—all this help.

His dream is to continue to be “good,” especially as a brother and uncle. He desires a life in which he does not need medication or other outside supports, but rather, is able to live independently and do things on his own. In addition, Marshal hopes to attend more social functions sponsored by his Alcoholics Anonymous group, to avoid isolation.

He has bigger dreams, too:

Big dreams, I’d like to be a movie star one day. I’d like to be a musician. I have dreams of that but I don’t know how much talent I have. I’ve never done any acting or any—and I used to like giving presentations in high school sometimes, so—and I chair meetings sometimes at AA.

Marshal felt that participating in The Schizophrenia Oral History Project was a way to show his agreement with the goal of the project. While he still has reservations about committing to things such as volunteering or helping others, he wanted to take this opportunity to give back; his hope was to take responsibility and participate as a way of giving back in some way for all the support he has received. He has had, and continues to have, hard times as well as good times, but he hopes the best for others. Marshal’s wish is this: that other people have lives that are not all bad, and that each person is able to overcome the challenges that may occur with a diagnosis of schizophrenia.

Hai Ho is a 55-year-old Vietnamese male residing in Portland, Oregon. He lives in a group home and spends his days writing and listening to music.

Hai was born in Vietnam and lived there until he was 15-years-old. Despite living in Vietnam during the war, Hai has good memories of life in his home country:

Hai: My family was in the capitol, Saigon, and so we were pretty peaceful—only in 1968 when there was the Tet Offensive and the Communists came into the capitol and tried to take over. But otherwise it was kind of nice, you know. I had friends in my little group—streets and homes area—and it was kind of an innocent life because there weren’t too many machines and we just tried to live day by day, or week by week, because we were pretty poor there.
Interviewer: What made you decide to want to come to the United States when you were a teenager?
Hai: It was at the end of the war, you know, and people all tried to escape the Communists because we were in the South, and the South were fighting the North. And so a lot of people left the country and came as refugees.

In 1975, near the end of the Vietnam War, Hai, his parents, and six of his eight siblings came to the United States as refugees. Hai’s aunt, who was working for the United States government at the time, helped them immigrate. When they arrived in the United States, Hai and his family lived in South Carolina and worked on a farm for a while. Later, they moved to California and lived there for around eight or nine years. During that time, Hai’s two brothers, who had been in the military, came to the United States, and his whole family was reunited. Hai’s family then moved to Portland, Oregon and, except for college, he has lived there ever since.

Education is very important to Hai’s family, and all of his siblings have college educations. Hai attended Oregon State University, where he got Bachelor’s degrees in physics and mathematics. Hai was so successful that he got a scholarship to the University of Utah for graduate school and earned his Master’s degree in electrical engineering. In July of 1985, Hai was working on his thesis and planning to get his PhD when he started hearing voices.

Listen to Hai talk about the symptoms he experiences:

Even though Hai was hearing voices all of the time, he knew he needed to work, so he worked for a number of years while struggling with symptoms:

I did hear voices in 1985, but I was so young I could not stay home, so I tried—I lost my job at Hughes Aircraft Company and later on I tried to find a job, and I got one with the Naval Aviation Depot in Alameda, California. I think the boss was nice and he probably know I have problems but he wanted to give me a chance to see if I can recover and do it, so I kind of dragged through the job for five and a half years. And I think the bosses were lenient and that’s why I was kept. But I finally resigned because my problem got so bad. My brain got burned out and, like, couple times I feel very strong radiation and I believe it’s from this satellite who was trying to destroy my brain, and it burned my brain—I feel like half of my brain was burned away and I suffered that for four years, and I keep on praying and talking to the angels and see if they can fix my brain. And finally four years later, like overnight, I feel like my brain was rebuilt again.

Listen to the above excerpt here:

But, unfortunately, the voices returned…

I [heard] voices more and more, and I tried to—I resigned my job at thirty-two years old in 1992, you know, and in February 1992, I resigned my job and tried to fix my schizophrenia problem because, you know, it’s really bad. [In] 1997, I suddenly broke down for a couple weeks then and I don’t know why. I was thinking a lot about the girls in the war, you know, like the Vietnamese girls who were suffering, and I tried to help them, and I give money to Vietnam. And I could not eat, sleep, like but once a week, and I was getting skinny and so my family called the police and take me to the hospital.

One of the things that helps him is writing. In fact, writing has been instrumental to Hai’s stability. In 1995, he started writing and finished his first book, Discovery of Invisible Intelligent Life and Civilization. He sent the book to the White House, after which he received thank you letters from President Clinton and Vice President Gore.

Despite being hospitalized in 1997, Hai still believes that the years from 1995-2005 were good ones for him. He credits his success to angels from America, Russia, China, and Vietnam, who he says protect him from nerve radiation and bad angels.

I done really well otherwise from 1995 to 2005. I stay home and I was really excited about discovering the angels, and so I talked to them by typing on computers about six to eight pages a day. And I talk to them and they can see what I type. I keep talking and different things and discuss my life. And I have SSDI also, so I didn’t have to work. I just sit home and do that, and I was stable and stayed out of the hospital.

Hai started having difficulty again in 2006. He went into a deep depression that included sleeping most of his days to fight off suicidal thoughts.

There are two kind of suffering. There’s mental suffering and physical suffering and I suffer both. And from 2006, I suffer mentally, torture by satellites, and I sleep for fourteen, fifteen hours a day to try to avoid depression because I hear voices that say, “You have to die.”

Listen to an expanded version of the above here:

In 2007, Hai was hospitalized again for around 10 months. However, the doctors put him on new medication that has helped him to function well for several years now. At the time of recording his story, Hai was living in a group home, where he has time to write, research his interests on the internet, and listen to music:

I’m pretty much settled down now, and I live in a group home and it’s a nice area. It’s close to the market, and I get up about 8:30 and I don’t eat breakfast but just drink coffee and I enjoy typing. I hear good voices from the angels, and they said they love me for working with them for twenty, thirty years. My book will be twenty years now old by next month, and I’ve been working with them and I typed about 44,000 pages of conversations with them, you know, just like people talking out loud. I talk by typing on the computer in Open Office document. And then eat lunch—I do that when I have time, and I write e-mails, and kind of Google search on dark matter angels also, with Google. And I listen to music a lot also. Music has been really helping me.

Even though he hears voices and struggles on a daily basis, Hai finds meaning in the suffering by conceptualizing it as a way of protecting and helping others:

Yeah, I think I just suffer and I rationalize by thinking that, you know, I suffer for other people. Like I’m like a Marine taking the bullets for his friends, you know, somebody has to suffer to kind of be—take away the resources of the enemy. Otherwise the enemies will attack other people, you know, so I just rationalize that.

I think one good thing about my suffering is that I can leave the information for my family and maybe friends who help my family not to suffer schizophrenia anymore in the future.

Hai believes in Buddhist principles, particularly the concept of karma. Others have helped him, so he believes in helping others and being kind to others as well:

Hai: Sometimes people suffer so much. They think it’s meaningless but they should think that they are taking the bullets for other people, you know, and that might help them. I try to promote Buddhism also because I think it’s a peaceful religion… It promotes no harming, no killing, and so—yeah, and I don’t promote, not too much, but just examine my story and maybe they think it’s a success at the end, you know, and try to be nice and try to do good things for other people. Just like I was harmed, you know, but I was a nice person and I suffered so much, so when I see suffering people I give them money. And I have problems with that, too – managing my money.
Interviewer: But you try to reach out to other people who are also having difficulty.
Hai: Yeah. Yeah, but I think eventually other people will take care of you again, you know, and once you do good things for other people and then there’s some other people who look out for you and help you.
Interviewer: So it comes back to you.
Hai: Yeah, it comes back. I thought about the laws of karma, and when you sow the seed, you reap the fruit and that kind of thing, and I think people should believe in it and be careful in what they do.

Despite being diagnosed with schizophrenia, Hai feels as though he has accomplished a lot in his life and has a lot of good memories.

It was important for Hai to tell his story, especially because he finds it hard to open up to people. Nonetheless, Hai hopes his story will help others:

I find it really hard to find somebody to talk to about my life, especially verbally because they don’t have the training or the understanding to listen. And so it’s really nice to talk to you, Dr. Tracy, and have you ask questions and keep me going. I enjoy it, and I hope the information will help society.

Jason is a 34-year-old Caucasian male who was interviewed at his home in Ormond Beach, Florida. He has only had his schizophrenia diagnosis for a few years, but it has greatly impacted his life, both socially and functionally.

Jason had a difficult childhood, filled with abuse at the hands of his father and alcohol abuse throughout his family. Jason describes his family’s alcohol abuse as having a profound negative effect on him, making it difficult for him to think straight.

He was able to graduate from high school with the help of special education classes and afterwards worked at Lowe’s as a receiver and stocker. Then, around age 28, Jason began experiencing symptoms, causing him to have to quit his job. However, he hesitated for four years before telling his mother what was going on inside of him.

Listen to Jason describe what happened when he told his mother about his symptoms:

Although schizophrenia has impacted Jason’s daily life significantly, he believes that one of the hardest things was losing all of his friends.

I even told my bowling partners that I have schizophrenia and they said, “We want nothing to do with you.”

Listen to Jason talk about how friends treated him once they found out he had schizophrenia:

Due to how they treated him, Jason is afraid to open up to others because he doesn’t know how other people will react to him. Even though Jason is afraid, he still wants friends and is also aware of how his illness impacts his own ability to participate in relationships:

I didn’t have schizophrenia, I’d try to be there for my friends, for my family, and just be a normal guy. I just wish that people that truly do have schizophrenia try to make friends, be there for yourself, be there for your family, and live a grateful life.

To be sure that his diagnosis was correct, Jason went to Maryland to be tested at the National Institute of Mental Health. He stayed in Maryland for over a month getting tests done.

I went to [The National Institute of Mental Health in] Bethesda, Maryland. I went there for studies to figure out what’s wrong with me. How could they properly diagnose me over there? They did CT scans, MRI’s, bloodwork, EKG’s, all this stuff, the whole thing. And I went through testing almost every single day and I loved it over there because I—I felt comfortable, I felt open. I was able to talk to people.

Despite his positive experience with the testing, the trip itself was a hard one for Jason. He had a psychotic episode while at the airport, but was later able to be cleared by the airport medics to travel back and forth by himself. Jason struggles to manage his illness and his symptoms, living in constant fear of having another psychotic episode.

Listen to Jason talk about his experience of having a psychotic episode while on a city bus:

Jason is currently seeing an ARNP (Advanced Registered Nurse Practitioner) who prescribes and manages his medications. He knows he needs a great deal of support and wants weekly psychotherapy, but because he has Medicare, he can only find therapists who are available less frequently (e.g., monthly) or have waiting lists of as long as five months. He is aware that he needs more immediate care, describing that the hardest part is keeping himself alive at times.

Interviewer: What’s the most challenging thing in your life?
Jason: Just living day by day without committing suicide.
Interviewer: So you’ve struggled with that, with the idea of taking your own life?
Jason: Yes, I have.
Interviewer: Do you struggle with that every day?
Jason: No, I do not.
Interviewer: Some days are worse than others?
Jason: Some days are worse than others, yes. Which I have no intentions of doing. It’s just very scary for me sometimes.

A typical day for Jason involves waking up and spending most of his day inside, trying to relax and calm himself from the paranoia. It also involves contacting facilities to try and get the extra help and services he needs to function better in his life.

A typical day is where I have to stay inside and just try to relax because I can’t—sometimes I’m afraid to go outside. I have to watch my back 24/7. I get senses where I can just tell someone is staring at me from behind and I can turn around and search my vision and just—because I’m so paranoid outside, half of the day, I just choose not to go outside… I try to get nursing facilities. I’ve called a couple places and I can’t get no one to come up here and help me because insurance won’t cover it. I have trouble just bathing. I forget my medications. Daily life is just really difficult for me.

Small trips out, like going to the grocery store, bring their own challenges.

Jason: I try to have my parents on the phone with me while I’m doing it, telling me what to recommend to eat. I don’t cook. I only do microwave. I—I’m afraid I’d burn the house down if I do that.
Interviewer: And how about your shopping?
Jason: It’s very difficult for me to do grocery shopping. I just can’t—I do it so quickly, sometimes I don’t eat very nutritiously and it’s so hard, I only get the cheapest meals.
Interviewer: Tell me a little bit more about that. You go to the grocery and it’s hard in what way?
Jason: It’s hard for me to select my own meals. I really can’t go to the grocery store and say, “Okay. Oh, look, this is five bucks but I don’t want to spend five dollars, I can get this for four for five.” But it’s more unhealthier, and I just can’t make that decisions by myself.
Interviewer: So decisions are really difficult for you?
Jason: It is.

Even though they provide support when he goes grocery shopping, Jason’s relationship with his family is still rocky. He describes that most of his family members don’t understand what he is going through and seem to minimize the distress he experiences.

Listen to Jason talk about his family members’ perspectives on his illness:

Like his family members, Jason believes that most people don’t understand about schizophrenia, which motivated his decision to share his story with The Schizophrenia Oral History Project:

Interviewer: Why did you want to tell your story?
Jason: I wanted to tell my story to let people know how the illness really is. I wanted to be able to open up and be thoughtful to other people.
Interviewer: What do you think most people think about schizophrenia? What do you think they think when they hear that somebody has schizophrenia?
Jason: I think they make laughter out of it. I don’t think they’re real serious about the condition. I think they think it’s a joke.

In the midst of his daily struggles, Jason still has wishes for his life:

Interviewer: If you didn’t have schizophrenia, what would you like to do with your life?
Jason: Uh, to become a professional bowler.
Interviewer: Are there other things that you would like to have in your life that you don’t have right now?
Jason: A wife. Somebody that can understand truly what schizophrenic is and how it affects people.

Mindy is a 56-year-old Caucasian woman living independently in an apartment in Cincinnati, Ohio. Mindy is diagnosed with paranoid schizophrenia. She agreed to be interviewed as part of The Schizophrenia Oral History Project because she wanted to open up to others about her life and her struggles. Mindy is a hard worker who currently volunteers at The Recovery Center, where she also takes classes.

Mindy has great memories of her childhood and a close relationship with her mom and sister. Her family moved around a lot when she was young. However, Mindy also had some struggles growing up. She remembers her brother physically molesting she and her sister and the impact this had on her family. Despite this hardship, Mindy still remembers being a happy child.

Listen to the Mindy talk about her favorite childhood memories:

When Mindy was 16-years-old and in high school, she had her first psychotic break. She was diagnosed with acute schizophrenia and put on medication. Although the medication gave Mindy horrible side effects, she stabilized, was able to stop taking medicine, and moved on with her life.

Listen to Mindy talk about her life following the diagnosis:

Life in the Navy served Mindy well. Unfortunately, her boyfriend at the time drugged her one night, leading to another psychotic break. Mindy was hospitalized for three months and unable to return to the service. Despite this setback, Mindy was able to get back on her feet.

When I got out of the service, I went into a halfway house called CRI, Cincinnati Restoration, Incorporated. And they—that was a stepping stone to going back to living independently. And I got an apartment, a subsidized apartment in Price Hill and then I actually got a job as a secretary at Easter Seals, and I was there for six months and got laid off because they went through a budget crunch. And then after that, I decided to try for another job. And I saw this ad in the paper for typists, so I applied for it and they called me and I got hired and I was there for five years, five and a half years. And I heard they were moving out of the area, so I went and got another job at Lazarus, and I was hired as a secretary there in a secretarial pool, and I worked there for two years and three months and then I got laid off from there. So, I—then after that, I was looking for a job and I got another job at Central Trust, which is now called PNC… And I was working at the bank for about four and a half—four years and ten months. Got laid off due to restructuring.

Mindy continued to jump from job to job, but the medication she started taking following her second psychotic episode began causing a side effect called tardive dyskinesia. Tardive dyskinesia is a condition caused by long-term use of antipsychotic medication. It can cause repetitive and involuntary movements. For Mindy, her tongue starting rolling around and hanging out of her mouth, and her body was “twisting.” Because of this, Mindy ended up back in the hospital.

I ended up in the hospital and then eventually I ended up in Mount Airy Franciscan, and I was in there for about eighteen days and came out and was put in Crisis Stabilization on Vernon Place. I was there for a couple weeks and then I had stayed with a friend of mine. She let me stay at her house for a couple weeks and—I think about a couple weeks and she tried to help me find a halfway house, along with my case manager, too. So, basically, I did eventually get another halfway house set up. That was in ‘96, and then I started going to IKRON and I went there for about almost two years and I was volunteering at the front desk, and actually I went through the rehabilitation program there. I was volunteering at the front desk and also getting paid for it as a part-time job. As a part-time job, I was getting paid for it. And I also worked at this Episcopalian—not Episcopalian, Church of God, and I worked there part-time, too… And I was trying to go to school at the same time and it was just too much pressure. I dropped—in fact, I dropped out of college… I then went to get hired as a secretary at Transitions, Incorporated in Covington—in Bellevue, Kentucky, and I was there for thirteen years—almost thirteen years.

When Mindy left Transitions, Incorporated, she began looking for another job. However, upon advice from her doctor, Mindy got on disability and began going to The Recovery Center. She has found a lot of meaning in her time at The Recovery Center and loves helping with their programs.

Listen to Mindy talk about her life leading up to her time at The Recovery Center and what she does there:

Even though Mindy is doing really well, she still deals with the daily struggle of hearing voices. As part of her diagnosis, the voices she hears make her think that others are out to get her, making it hard for Mindy to trust anyone she meets. One way Mindy helps distinguish what is going inside her head is to name her voices.

Interviewer: So your voices have names?
Mindy: Yes.
Interviewer: Interesting.
Mindy: Yes, because I think they’re people talking to me, so I personalized them. I put a name on them because—just to remind me or I see a picture in my mind of ‘em and I say, oh, that’s so-and-so. You know.
Interviewer: So you can identify which voice it is?
Mindy: Yeah.

Listen to Mindy talk more about her experience of having schizophrenia:

Mindy says that sometimes she knows when she is about to start hearing voices. When she is out and active, she is able to keep the voices at bay, but as soon as she gets home, the voices will start.

It’s like an explosion of energy or explosion of emotion. It’s physically and mentally, too… physically I get unhinged… I’ve got to check my purse to see, to make sure I have all my personal belongings and stuff, and so I get paranoid about it.

Despite hearing voices every day, Mindy has found ways to cope. She listens to music, exercises, takes walks, or sleeps.

Mindy: Well, basically I stay busy. If I can’t stay busy, I call a friend or call my mother or I get involved with church activities, I call my sister or I text my sister and—but I’m doing much better since I’ve been with GCB and I’ve been with my doctor—my present doctor for about sixteen years, I think, sixteen or seventeen years, maybe eighteen. I’m not sure. I can’t remember now.
Interviewer: Still a good long time.
Mindy: Yeah, so it’s about time I was right. So, it’s been hard. But one of the things I do have a problem with when I hear the voices or interact with people, I have a problem interacting with some people that I feel sort of—that want to be my friends but then they’ll back stab me, you know, or they’ll say–Like when I become a friend of somebody, I’ll come home and hear something bad, or hear them say something bad about me, like say, “You’re bad,” or “You eat too much,” or stuff like that.

Mindy also has a lot of interests and hobbies. She is involved in her church and loves art.

Listen to Mindy talk about what she likes to do for fun:

Another form of art Mindy enjoys is photography. She takes a class at The Recovery Center, called “Photo Voice,” where the whole purpose is to reduce the stereotype of mental illness.

Mindy: Photo Voice is where they’re working on recovery, the recovery piece is stigma on mental health.
Interviewer: Doesn’t that involve taking pictures?
Mindy: You take pictures and then—any kind of picture you want to of something and then put a narrative with it and it talks about the stereotype, the discrimination, the prejudiceness of it—of mental illness of people that don’t have that don’t have mental problems. And we’re trying to get it out in the public’s eye to see if we can change their attitude.

Reducing the stereotype of mental illness is important to Mindy because she has personally experienced prejudice. She doesn’t remember exactly what happened, but all she knows is that it made her feel different and “shut out.” Mindy believes that the people who made her feel this way were just uninformed about schizophrenia.

One thing that helps Mindy feel normal is working. It is very important to her to have a job.

It is important to me because, I don’t know, having a job makes me feel more positive because my self-esteem is more—I mean volunteer work is empowering, there’s nothing wrong with it, but I would rather make money with the work I’m doing because I need the extra cash and I need the—the—I guess the empowerment of being appreciated.

Mindy is currently doing really well managing her illness. She lives in her own apartment and takes the bus to places she has to go. Mindy is working on getting her drivers license, with help from her younger sister, so she can help out her mom. Mindy’s plan is to be able to move in with her mom in the next few years.

Mindy is currently not dating anyone, but she is hoping to find someone to spend her life with. She believes finding a boyfriend or husband would make her feel more complete.

Listen to Mindy talk more about wanting to find a companion, as well as some of her other wishes:

As for what Mindy’s wants others to know about her, she hopes others realize that she is a good person. Mindy says that just because she has a mental illness, it doesn’t mean she has done anything bad.

Listen to Mindy talk more about what she wants others to know:

Miss Harris is a 45-year-old African-American woman living with a roommate in Cincinnati, Ohio. After years of not only struggling with schizophrenia and bipolar disorder, but also drug and alcohol addiction, she is now in a good place and ready to share her story.

Miss Harris describes growing up in a good home and initially having a good life. She was one of eight children and the youngest of the five girls in the family. Throughout most of her young life, she lived with her mother, father and four of her siblings.

However, growing up, Miss Harris always knew something was different about her. She remembers not having many friends and always feeling left out. As a result, she kept to herself most of the time except when she would give away food to people who needed it.

Listen to Miss Harris talk about the difficulties she experienced when she was young here:

Unfortunately, Miss Harris was exposed to a lot of substance abuse when she was younger and started drinking and smoking marijuana at the age of 12.

My brothers and sisters were older than me. They was doing it. I’d sneak the drink out of their cups, you know, stuff like that. Marijuana was used in my family, you know, yeah, and I would sneak the cocktails. And friends in the neighborhood, they used marijuana.

At only 13 years old, Miss Harris found herself homeless. Sometimes she would stay with people, other times she slept in an abandoned building. Eventually she began living with an older boy because her mother and stepfather were sick. Miss Harris found herself using drugs, prostituting, and being taken advantage of by men. However, she identifies as the worst thing about drinking and doing drugs was that she stopped taking her medication.

I was making myself sicker and then, you know, I was told that if you don’t treat the mental illness and the alcoholism—which I found to be true—then you’re not treating anything. You know, you stay stuck; you stay sick. And that’s basically what happened to me… When I got to work, I was happy because, you know, you got people in the neighborhood, you got people shopping, and being a bagger or a deli clerk, you’re dealing with different people and stuff like that. So, that kept me happy. And then once I got off of work it was like, oh, I’m back down in this slump again, and so I would end up drinking and I stopped taking my medicine and I stopped going to groups, you know. I stopped talking to the case manager.

She finally found her way back home and was welcomed by her family with open arms. After this, she was able to obtain her high school diploma. But Miss Harris’ struggles continued when she went to jail. She spent a year in Marysville prison for a felony as well as a few weeks incarcerated in Cincinnati. Miss Harris received support after getting out of jail, but she still struggled. She has now been sober for three months and does everything she can to stay that way. She goes to Alcoholics Anonymous and spends her days at the Recovery Center of Hamilton County.

I come here [Recovery Center of Hamilton County] and this is a big change for me because usually I’d take groups and stuff like that, back in the past. I’d do them for a minute, you know. I was there, I was there learning about me, but this is entertaining and it’s interesting because I’m learning about me and I’m having fun. You know, with the activities that we do here…We have one group where she says introduce yourself to everybody in the room and I think that’s pretty cool because you can remember who the people are that you’re in association with when you come here… The art classes are wonderful… They’ve got the computer class here for somebody like, you know, you can learn to use a computer, you can go on Facebook. You can do this, search the internet, find something you like, watch movies or anything. But the groups here, the ones I’ve taken—I’ve taken computer class, recovery groups, assertiveness classes. I’ve done—let’s see, right now I’m doing Mindful Ways—Mindfully Choosing Happiness is one of my favorite classes… They’ve got the one-on-one counselors, you know, the groups. Some of these places the groups are small. You can go like three or four people in a group, you know. It’s not like you’re going to go in a group and always be talking mental health. They’ve got fun activities that you do that you learn about yourself. You’re doing work on paper but it’s not like you’re getting a grade or nothing for it. But you learn about you, and once you learn about yourself it’s not as hard… They’re giving us skills basically, they’re giving us survivor skills and life skills to do better.

Although Miss Harris has struggled socially since she was little, she does enjoy being around people.

But I love people and I used to get around people and then once we started talking, I just would start crying and they’d be like, “Why are you crying?” and I’d be, “Because I’m happy that you’re here.”

However, she is aware that others see her as different because she has a mental illness. She is not unique in having this awareness and has experienced the isolation that being seen as different can cause.

Listen to Miss Harris talk about the inaccurate perceptions and how she is overcoming isolation here:

One way that Miss Harris overcomes isolation is by living with a roommate. She likes having the company of another person because she gets worried when she is alone.

I can really get paranoid when I’m by myself because I feel like there’s someone under there and it scares me. And it’s not, you know–Because I know it’s not, but I just keep feeling like there’s somebody behind me, and I’m in the house by myself. And that’s kind of scary, you know? So I have to watch something that enlightens me, interests me. I’ll read a book or something, so I’m getting more tools here.

Miss Harris is learning ways to distract herself because her goal is to be able to be by herself and not be scared. She believes that the path to recovery involves the acceptance of having a mental illness and a willingness to act to help yourself.

Listen to Miss Harris talk about acceptance here:

Her life has taken a significant turn from where she used to be. Miss Harris has decided to go back to school and is currently taking psychology classes.

But I’m still challenging my mental illness because, you know, I’m trying to get back to work. I was going to school for psychology. I’ve still got the four years I’m looking at. But I’m trying… And I figure psychology because—it can’t fix me, but I can learn about me, too… I wanted to do something to help me help the other people that are sick, too.

Although her current dream is to pursue psychology, in the past her dream was to work in construction so that she could build a house for her mother.

Listen to Miss Harris talk more about her dreams here:

Miss Harris is very proud of her accomplishments, even though she never thought she would be where she is in her life now:

Miss Harris: I have a lot to be proud of. The fact that I am doing college and taking this four-year Master’s degree thing really serious. I come here. They give me two days, like I do groups. I was doing groups fulltime here. They give me two days to work on schoolwork, I mean, you know, like four hours, afternoon or morning. Then I can work on my schoolwork. I’m proud that I do have a GED (laughing). I’m proud that I can work. I’m proud that I’m not beating myself up because I’m challenged, because I used to. I used to say I don’t want to feel like this, so every now and then I’ll ball up, you know, because it stops me from doing a lot what I want, you know, like job-wise. You know, I did take one job and they said, “We won’t deal with that. Are you taking your medicines?” And I said, “Yes, sir.” And they hired me anyway for being honest. So, that was cool. I am—let me see. I am proud of—right now honestly the biggest thing is that school.
Interviewer: That’s a big thing.
Miss Harris: —because I never thought would do it. I never thought I could do it.

When asked what it was like telling her life story, Miss Harris felt only relief.

Oh man, I feel like a weight’s been off my shoulder a little bit, and I need to get the chance to talk, let somebody hear me. You know, even if I’m mixed up with my words, if somebody hears me and I got it out, it’s good to get things out rather than just hold them in. Like I said, I try to pray and try to figure what God speak to me. That’s why I’m here. Somebody else will get the message.

Listen to Charles’ message here:

Charles is a 55-year-old single man who lives independently in his own apartment. Charles’ childhood years were difficult due to early trauma. He experienced physical and mental abuse at the hands of his parents and siblings. However, he did well in school and eventually obtained his GED. And throughout his life, he has held jobs in in kitchens, landscaping and newspaper delivery

Charles was 15 years old when he began to experience symptoms of schizophrenia. Listen to him talk about that here:

Although his first experience with schizophrenia began when he was a teenager, it took Charles a long time to accept his diagnosis.

I have recently admitted and accepted that I had schizophrenia. I was probably—had some problems when I was a teenager, and—but I never paid attention to it, I never listened to the doctors. I never agreed with what they said, and mainly I never accepted what they said. So it was very much a tragedy for me to be in denial. Had I not been in denial, it would have been a lot easier for me to recover. It was the hardest thing in the world for me to admit to myself that I was having this affliction. And I’ve had the symptoms since I was a teenager… I had been diagnosed with a problem and, of course, I didn’t want to face it. I didn’t want to talk to the doctors. I didn’t want to take the medicine. I didn’t even want to have this affliction. And I fought every—I fought tooth and nail every time they told me that I had it, and I fought against it. I didn’t want—I never wanted to admit it, that I had it, or anything like that.

Charles’ difficulty accepting his illness led to not getting proper treatment. He remembers living in fear for a long time because his symptoms terrified him. The fear became so bad that he began to have panic attacks.

My life has been just a shambles with the delusions and things like that, and the terror and the fear, and never really knowing exactly what was going on in my mind, whether it was my thoughts or—I always believed that it was something being projected into my mind. I always believed that even other people could project their thoughts into my mind – things like that. It was really very terrifying, and just like a vicious cycle for me. Never got better, never improved, always got worse. Always got worse, and then it got to a point where I started having panic attacks, things like that, brought on by my delusions and things like that. I was just completely at my wit’s end.

Listen to the above segment here:

One of the things Charles currently does to cope with his symptoms is art.

Charles: Right now I love anything that has to do with drawing, art…I love anything to do with military tanks, airplanes, soldiers, machine guns. I’ve just always been fascinated with military things like that. Well actually, on the opposite end, I love to draw flowers. I love to draw comic faces—comedy faces. Just about anything actually…Funny psychedelic designs, you know, I do a lot of those-.
Interviewer: How does it make you feel when you draw?
Charles: That’s about one of the only times that if I’m sewing or drawing or something like that, doing something with my hands, that I don’t have to really fight the symptoms of schizophrenia and things like that. It’s a big relief for me; it’s a release for me. It’s very relaxing.

Relationships are also really important to Charles. He loves spending time with his friends and doing little things for them, like bringing gifts or cards.

Charles: I love people. I love having a broad social life. I love making people happy, you know? I really do.
Interviewer: What kinds of things do you do to make people happy?
Charles: Well, I want to do everything possible. You know, I make them birthday cards. Sometimes I’ll buy them little gifts and things like that. I do everything I can to try and make people accept me and for them to like me. That’s all I want; I want to be accepted, I want to be liked. I think I mainly want to be liked by people and bring them some happiness if possible. Bring them some joy just from socializing with them, you know? That’s what I’d like to achieve somehow.

Listen to the above segment here:

Although Charles values his relationships, he worries about how others perceive him. He believes that he is a good, considerate person but is scared that people won’t want to be around him and are afraid of him because of his mental illness.

I was really scared that people would label me, and I was really scared that they would not want to associate with me and that they might even be afraid of me, to a certain extent. Because they’d say, “Well, he’s crazy. He’s not right. He’s not normal.” And, you know, maybe they might avoid me.

Charles has hopes and dreams for his life, particularly the dream to be normal.

Charles: And I don’t know what the word ‘normal’ is, but my dream is to be normal. That’s the only thing I want to be. I want to be labeled as ‘normal.’ I don’t want to be labeled with an illness. I don’t want them to say, he has a broken arm, he has a broken brain. I want them to say, he’s okay. He’s finally one whole person. He’s finally normal. He doesn’t have to worry about schizophrenia, you know. I mean, even sitting here, I’m not nervous but I’m more or less—I’m not really having an anxiety attack, but the fear that something will pop into my mind or something like that is almost always there.
Interviewer: So normal would be a day without that happening?
Charles: Yeah, exactly. That’s my only dream in life, to be normal again, and to be in society looked at from others—even any doctors, even any psychiatry or anything like that, he’s A-OK. He doesn’t have this illness, he’s healed, he’s better now. I mean, if you break your arm, it’ll heal. I don’t know if my brain will heal or not, but it seems to be to a certain extent. And then again, some days it’s worse than others.
Interviewer: Yeah.
Charles: But being normal would be my only goal. If I thought I could give every penny, dollar, clothing, anything, just to be normal again, I would do it. I’d start out as a baby, you know, completely naked, and I think I’d be happy. I really do, because I don’t see any material wealth in my life at all making me happy at all. No cars, no houses, no money. I just want to have a normal brain… I think I could really achieve a lot more. I could really do a lot more for myself. I could possibly get a good, better job, whatever. Instead of being a burden to society, I could be a help to society.

Charles hopes that others will not let their symptoms get as bad as his did and encourages them to seek treatment.

I mean, my advice is don’t let yourself get that way. Seek help. If you feel there’s something wrong, find a doctor, find a nurse, find a friend, find a preacher, anyone who knows something about this and can help you with it because there are people out there who do care. They really do, and they can help you. But you have to put one foot forward. You have to do it yourself also. People—they will help you but they can’t do it without your help. They’re not going to just act unless you let them know what’s going on.

After years of struggling to accept what he was experiencing, Charles finally believes he is now on the road to recovery and better able to manage his symptoms.

Listen to Charles talk about getting better here:

When Charles was asked what he most wants people to know about him, he stated:

I think the thing that I would most want people to know about me is that no matter how sick or ill you are, you can get better. And I’m proof of that. No matter what you feel about yourself, there is a better—there’s a solution to your problem. And there are people out there who want to help you, and there are people that will help you. Seek them out. Don’t stay in a state of denial. You’ve got—you know, if you have a problem, try to accept it, as hard as it may be, and work on recovering.

Listen to the above excerpt here:

Penny is a 37 year old Caucasian female living independently in her own apartment in Cincinnati, Ohio. She values her family, children, and music. She has received support and strength from her parents and siblings, and is now happily married to an understanding man. She adores children, and has three of her own. Music provides her with emotional connections and strength during difficult times.

From elementary to high school, Penny was a good student, typically receiving A’s in her classes. She was involved with various activities, participating in the Spanish honor society, yearbook club, and marching band. She was motivated to take part in multiple extracurricular activities through her desire to impress and honor her parents. She knew what they sacrificed in order to take care of herself and her siblings, and she wanted to do well in activities as a way of honoring their sacrifices.

It was not until Penny was well into her young adult years that she received a diagnosis. After the birth of her third child, it was thought that she possibly had postpartum depression. Penny, though, just thought that she was “weird” or “different” and that eventually there would be nothing worthy of concern. However, after an episode filled with delusions and hallucinations, she realized that she could no longer ignore or deny that something was indeed wrong. Penny was diagnosed with schizoaffective order with severe depression when she was 26 years old.

Listen to Penny describe her diagnosis here:

In the years following her diagnosis, Penny spent time in various facilities. On the first trip to the hospital, she attempted to jump out of a moving car. A few months after her first episode, Penny felt better and decided to stop taking her medication. However, this ended in “bad spells,” and she was admitted to the psychiatric ward of the hospital, where the doctors tried to find an effective treatment. She was prescribed many different medications, and as a side effect, gained weight. Finally, the doctors settled on what was deemed as an efficacious combination of medication for Penny.

During Penny’s second hospitalization, she was visited by her younger brother. At that point, Penny misunderstood her diagnosis and was worried that she was contagious. The whole time that her brother was there, Penny did not look him in the eye; she did not want to risk passing on her illness, and thus the terrible experiences that she had.

And I couldn’t look him in the eye. ‘Cause I thought it was contagious. And I was—I thought that I was being protective of my little brother. I don’t even know if he still understands the whole, whole thing which is sad to me. But, I thought I was doing the right thing. ‘Cause, like a cold. You can catch a cold. I didn’t know what I had, but I know’d what I’d been through, and I didn’t want my little brother going through that.

In addition to concern for her brother, Penny was also concerned for her children. One day, she found her way to the facility’s cafeteria and burned her wrists on the stove. The situation did not scare her at the time because she thought that in burning herself in that way, her children would be sent directly to heaven. Aside from knowing that her upset mother came to the hospital, Penny does not remember anything directly following this incident.

Another setback during Penny’s treatment occurred when she punched a nurse who was “in the wrong place at the wrong time.” As a result, Penny was “locked up,” and spent two weeks in jail. During her time there, her mind became convinced of multiple things. First, she was sure that she could be released if she gave the men on the other side of the facility sexual favors. She also remembers thinking that her grandfather was buried outside the window, and that a lot of cars would pull up and park around his grave. In addition, her face appeared contorted or different than normal when she looked in the mirror. Penny experienced isolation in jail, which is when she “lost touch with reality” and tried to commit suicide on the floor with a paint chip. She had no medication and was at the point of desperation.

Hear Penny describe her experiences in jail:

Since her time spent at different facilities, Penny has taken opportunities to reflect on her past actions, and is now able to discuss the memories and regrets that she has from such times. Penny feels burdened when she recalls the instances in which she hurt others by her words or actions. She provides the example of a time she yelled extensively at her mother, noting how badly she later felt about that. Penny feels as if her regrets are hard to think about now, and she believes that she will continue to struggle to deal with such things throughout the rest of her life.

Penny: It’s hard for me every day now to think of one instance in reality that I’ve, I’ve really done it. I hurt by my own actions the ones that I helped, that helped me, and the people who stood by me. And that’s something I’m gonna have to deal with for the rest of my life.

While Penny reflects on the things in her life that she regrets, she has also gained the self-awareness to recognize her sources of support, strength, and self-care. Penny praises her caregivers from various settings, recognizing the way they supported her in different stages of recovery. Her biggest support system, though, has been her parents and siblings, and she credits them for helping her over the years. She describes her mother as being “caring and bold” and identifies her mother’s openness as being most important to her. Penny states that her mother’s support through this openness helped her know that she did not have to hide from the world or feel badly for appearing to be “weird” or “different.” Rather than play into the stigma that society often places on individuals with mental illness, Penny’s mother refused to accept or participate in such stigmatization. Additionally, her previous mother-in-law was supportive through just taking the time to listen to Penny, and in reminding her about things she had to look forward to, which helped shift her thinking in a more positive direction.

While her living family members have continued to provide support to Penny, she is quick to note the strength she still gains from the memory of her father. Penny was close to her father, and describes herself as a “dad’s girl.” Unfortunately, the biggest blow for Penny came in 2010 when he died following a diagnosis of lung cancer. Even though he is no longer living, Penny uses him as motivation to work toward staying well, and she draws strength when she thinks of her father.

Listen to Penny talk about sources of support here:

In addition to familial support and strength, Penny relies on her faith in a higher power. She states that God knows her more completely than anyone on earth does. She identifies as Pentecostal, and seeks to learn from reading the Bible. A verse that has particularly stood out to Penny is one that discusses the sick being blessed, and she has drawn encouragement from this.

Even though she has received tremendous support from others, she has still had times of feeling as if she needs to be alone to intently focus on her own well-being. In such instances, she has blocked others out so that she could deal with her own emotions rather than the emotions of other people. In those times, though she unintentionally appeared distant, she was taking care of herself in the way that she thought best:

Penny: …so I had to block out everybody else because I wasn’t up to par with my own emotions.
Interviewer: Had to take care of yourself first.
Penny: Yeah.
Interviewer: That’s not always easy to do. How did you do it?
Penny: I just blocked everybody out. And If I wanted them to leave, they’d leave. I don’t think they understood it, but I did. I wanted to get well.

Now, though, Penny has methods of using the support and strength she receives to focus on self-care. She has made rules for herself, which include staying away from stressful situations, not isolating herself, and not trying to hide the fact that she may need help. These rules were created from experience; when she isolated herself, she noticed that her depression would become worse. To take care of herself, Penny tries to laugh; she loves when someone tells a hilarious joke or says something unexpectedly funny. If she does encounter a stressful situation, she uses animals, fiber optic lights, and good smells from things such as soap or incense to feel calmness and peace in the midst of stress or chaos. Perhaps even more importantly, though, is music, which has become a large part her life. Music provides emotional connections for Penny—she is able to connect to different feelings within the songs that she listens to and sings.

Penny describes the importance of music here:

Penny does not want to take care of herself only for her own benefit, but also for others: her children. She has three children: a son and a daughter, both in their teens, and a 12 year old daughter. Currently, the children live with their father, whom Penny is divorced from. They still have a good relationship, and she describes him as a good father and friend. She reflects that even though she only sees them once or twice a week, her children know that she loves them, and they view Penny as simply “mom.”

Listen to Penny describe her children here:

Penny remarried a few years ago, and describes the marriage, even though it can be hard at times, as “a fairytale come true.” She describes her husband as very understanding; he does not treat her any differently because of her diagnosis, nor is he scared of her.

For 11 years, Penny has been relatively stable but that still includes bad as well as good days. Some days, she feels great. Other days, she has to consciously remind herself to be grateful. If she is having a bad day, she has no motivation or organization, and feels that she has no worth. A practical way she can tell if she is having a bad day is through her level of desire to clean; Penny knows that she is having a bad day when she does not want to clean or do other things that a “regular housewife” would do. Her good days, though, occur when she is happy and finds herself looking forward to her future.

Interviewer: Do you have more good days or more bad days would you say?
Penny: Well I have–, I sleep a lot. I have sleep apnea too. But I would say–I have a hard time getting organized. I know I have to clean this house today, but I don’t want to. I know I have to do the laundry today and it’s just like, you can control that. That would be great. You can control how you want your house cleaned and it’s something positive… So, my good days are when I’m feeling good, looking forward to the future and being happy. Bad days are no motivation or organization and feeling of no worth. You know because you are not doing nothing that a regular housewife would do, you know?

So what does this future include? Practically, her goal is to always remember to take her medication. But she also has other, bigger dreams. First, she wants to visit Palestine, her husband’s home country. She would also like to lose weight, stop smoking, and have more children. Penny loves children and hopes that she can prove that she is a capable and loving mother. She says that “lots of kids” are in her future including, someday, grandchildren. She desires growth in her religion and increased closeness to God. She hopes to become even more thankful for the small things in life: blades of grass, the birds, and the trees. Penny has been amazed to find that when she takes the time to notice one small thing, such as a blade of grass, she begins to see the beauty of other things around her.

While she has hopes and dreams for her future, Penny still wishes she did not have the diagnosis that she does. If she could, Penny would trade her illness for a broken leg, because with a broken limb, she could still be “happy every day.” She describes mental illness as a deep loss, because she has realized that she will not get better; it is something that is always there. She says that individuals with mental illness have to consider things that others might not have to, and uses the example of suicide. In her life, suicide was previously considered an option. She does not know if others without a mental illness would have considered it the way she did.

Penny describes the impact of mental illness here:

The “deep loss” of mental illness often comes with an additional burden: stigma created by society. Penny has experienced such a burden, and speaks out about this. She states that she worries that if she tells others about her diagnosis, individuals will look at and treat her differently. She notes that she is more vulnerable, which is always a consideration when deciding whether or not to discuss her diagnosis with someone; it is a definite risk to share that part of her life with other people. Penny also discusses the assumption that individuals with mental illness are dangerous, even sharing that she has seen this portrayed in the media. Penny critiques this portrayal, and states that a person is not defined by his or her wrong actions that may occur during bad spells.

Though she experiences stigmatization, bad days, and wishing she did not have the burden of mental illness, Penny is still grateful. She would like to thank the people who have stuck with her through the good and bad times and for supporting her. She hopes that they have mercy and are able to forgive her for the things she has done, but regardless, she wants them all to know that she loves them.

And finally, Penny hopes that she can be an inspiration to at least one individual because even a single person can affect many others.

Listen to an expanded version of Antoinette’s message here:

Antoinette is a 67 year old single, Caucasian woman who was interviewed over the phone from her home in Florence, South Carolina – where she grew up. She enjoys painting, photography, and making jewelry.

The beginning of Antoinette’s life was full of promise. She was raised in a middle-class family and had one sister. Antoinette described herself as a shy and introverted young woman with an interest in art. She had her first psychotic episode while she was in college.

Antoinette: I went to Erskine College for a couple years and then went to the University of Georgia to major in art and I quit one quarter before I was supposed to graduate. And I went to—I felt like I needed a break which, that was sort of the precursor of my getting—if that’s the word. I don’t know if that’s the right word. But anyway, I quit college. I went to Atlanta and I got mixed up with a bunch of hippies. And that’s when I first got sick. It was in 1968.
Interviewer: And how old were you at that time?
Antoinette: How old was I? About 20 or 21.

In 1970, Antoinette was hospitalized for four months. Once she was stable, her mother insisted she go back to school. Antoinette went to the University of South Carolina where she was assaulted by a professor. She then transferred to another school closer to home but described herself as “horribly messed up by then.”

Listen to more about Antoinette’s struggles here:

Once Antoinette began taking medication, she started working while finishing her degree. After graduation, she got a job working for the city she lived in doing public relations, planning, artwork, and grant writing. Four years later, she resigned and moved to Washington DC to become an artist or musician. Unfortunately, she didn’t have a good experience and moved to Atlanta after a few months.

I got sick again—see, I got sick—I call it sick. Well, I had two—two times that I was kind of homeless and wandering around and stuff like that.

Antoinette described her frustrations with taking medication. She knows the medication keeps her from hearing voices and clears her mind, but she doesn’t like what it does to her body. However, Antoinette understands that she needs to be on her medication.

Listen to Antoinette discuss taking medication here:

One of Antoinette’s passions is writing about her schizophrenia. In the 1970’s, she kept a diary that she presented to E. Fuller Torrey, a well-known psychiatrist and researcher of schizophrenia, at a meeting.

In Columbia, South Carolina, there was a NAMI meeting or some kind of mental health meeting. I had a really good friend and her daughter—well, we were friends. Her daughter is schizophrenic. She’s a NAMI person. She’s very active. Anyway, we were at this conference and I had my diary with me, I guess, and I gave it to him and he told me he’d read it on the plane back home, which he did and he wrote me back. And he said it was well written and unfortunately he didn’t know too many places where I could get it published except that Schizophrenia Bulletin might help. So, that was a big thing for me. And the way they arranged it, they published the article and they put my name and address if anybody wanted a copy and I’ve got these letters and cards from all over the world, and it was just wonderful. Some of them were patients and some of them were doctors. Just all these impressive people and everything. It was just a blessing to me.

Click here to read Antoinette’s article in Schizophrenia Bulletin.

Antoinette has also published letters in her local newspaper.

I’m just amazed at some of the things I’ve been able to do, considering how sick I’ve been over the years. I used to—I wrote several letters to the editor and they all got published, about six or seven of them, I think.

Antoinette is also very active on Facebook and writes a lot about her experiences with schizophrenia, as well as her struggles with what type of religion she associated with and whether she believes there is a God.

Antoinette: This is when I first got sick. I wrote about it in the thing I sent to you. I heard a woman’s voice and she said that—about love, she said love and how important it is for everybody to love everybody. That’s kind of what I—that’s my religion, right there. Just that sentence. That’s basically something I keep. And also that experience that I had, being transported somewhere else.
Interviewer: Um-hm.
Antoinette: The combination of the two, they happened at the same time. I heard the voice and then I went running down the street to—I thought about this guy and I went running down the street and I went—asked him to hold me because I just felt like everything thing guy was doing, he was doing out of love unconditionally. And I guess that’s kind of what it’s like in the ‘60s, you know, when people used to go to—George Harrison and all those people would go to these gurus and everything, they think, well, this guy had the answers for me. And that’s the way I felt back then. Also, let’s see, pleasing God, I wrote one on that, about how—it says: “A woman worships God through her children. All the love that she gives to her babies, all the milk, all the diaper changing, all the playing is the most direct and the closest love a woman can have for God. For the man, it is the love he shows for his wife. This makes women and men equal in the eyes of God.” And then I wrote this one, “Want an answer? Why not ask God? All this bad stuff, if God were a wimp, we couldn’t care about him. If we didn’t care about him, why would he care about us? If nobody cared about him and he didn’t care about us, we would just sit here. If we just thought about each other, we would get depressed. Why would we get depressed? Nobody we know is God, what difference does that make? Ask God.” Ask God, that’s the end of it. I wrote that in a letter to the editor. I guess that wasn’t that bad.

Listen to a portion of the above segment here:

One thing Antoinette enjoys doing in her free time is art and photography.

Antoinette: I try to keep up with this art gallery here in town. I put paintings—I took art at the University of Georgia exactly, and I like to paint abstracts and peace symbol art, which is peace symbols out of ribbons and bows and stickers and paint and all kind of stuff. They’re real pretty
Interviewer: Do you do photography as well?
Antoinette: I did Timarron Park. There’s some sky pictures and I did some cemetery pictures with beautiful old oak trees and with gravestones, old graves and stuff, and I take pictures of my art for sort of like a record. And I can’t do things unless they’re easy to do. Like it’s easier to take a picture of something than to write down a lot of paperwork or something. You need to take a picture anyway, wouldn’t you?

Unfortunately, due to the medication she is on, Antoinette struggles to do physical activities. However, she is still able to cook for herself and others.

Interviewer: What are some of the difficulties you’re having with your body?
Antoinette: Walking, getting up, standing, and doing something. One thing is, I do cook. I still cook for myself and I get a pot. I put some oil in the pot. I sauté onions and sometimes I use lamb, sometimes chicken and sometimes beef. I sauté that together with salt and then I put garlic with it. I mince garlic and—I put vegetables. I love okra and squash and different vegetables to make different things. But I make it all—I make a meal enough to last for a day or a day and a half or so. I’ll mix them all together. I put rice, I put coriander, and salt. Sometimes I put eggplant and I’ve got—my girlfriend gave me some fresh tomatoes that were delicious. This girl at the door said she’d give me some tomatoes. I can’t wait to get into them. But I like to cook. I cook one—one, I have to be careful because my burner caught fire a couple of times and it scared me real bad. So, I’m just doing this one burner, and it’s easier. I get tired real easy, and this is something I can do, and I can cook and it will last for a couple days. Oh, and I put rice in the soup, too. Just put, you know, enough water to cook the rice, and also put tomato sauce sometimes, and sometimes I put couscous. I’ve got lots of spices and lots of things to choose from. I drink one or two Dr Peppers. Lately I’ve been drinking Dr Peppers again, which I don’t think is good for me health-wise. I’m trying to cut out my sugar, too, and I’m—you know, you’re getting tired of that.
Interviewer: No, I’m not at all. It sounds like you’re a good cook. Do you ever cook for other people?
Antoinette: Yeah. Sometimes I take things to people. I put some in a little Tupperware thing. Yeah. And sometimes—I have a cousin, Margaret. She’s my best friend. She’s 86-years old, and she is more active than I am. She cooks all the time. I go over there at least once a week and eat with her, and she gives me food and I take her food.

One thing that keeps Antoinette going is her cats. She has three: Princess, Tigger, and Posey.

I have a spiritual relationship with my cat sort of like an American Indian would have with an animal. She’s a very powerful cat and she—she guides me about half the time instead of me guiding her. She’s a wonderful animal. And the other two, they’re younger, but they’re wonderful, too. The little orange one likes to get in my lap all the time and the grey one, she just runs back and forth. She’s beautiful. If they had beauty contests for cats, she would win one. She’s beautiful.

Antoinette decided to participate in the Schizophrenia Oral History Project because she wanted to help others. Although she was anxious about participating, she was still willing to share her story.

I hope this is going to be beneficial for people like myself and for people that care about people like myself.

Jeanne is a 23 year old woman with schizo-affective disorder. She spends much of her time working at a card store, volunteering, and spending time with her boyfriend. Jeanne enjoys photography, listening to music, watching TV and movies, and is trying to get back into drawing and reading, which she did frequently before she got sick.

When Jeanne was a junior in high school, she began to experience symptoms of depression, although, like many, she did not initially realize it was depression:

Um it’s–it was weird because my life was perfect and I thought, you know, depression you had to have problems in your life, like loss of a family member, or abuse, but my life was perfect, so I never thought it could be depression. So it took me a while to get help and realize that it was depression.

After several months, her symptoms worsened, resulting in a suicide attempt:

And then I started getting help with my depression and, maybe a month later, I started to hear voices and see things that other people couldn’t see. I was just too scared to tell people so I had to deal with it on my own for quite some time. And um, which led me to be suicidal ‘cause living with undiagnosed schizophrenia, you don’t realize that there’s help or that there’s medicine you can take. So the day after my best friend’s birthday, I tried to kill myself and luckily my mom was home and so I did have an out.

After her attempted suicide, Jeanne’s high school required her to take some time to heal before returning to school, but the time alone just lead her to feel more isolated from the rest of “normal society.” Despite this setback, Jeanne was able to graduate high school; however, within a year of graduating, she and her mother moved to Atlanta (while the rest of the family stayed in Ohio) where Jeanne was treated in a mental institution for about a year. She describes her experience there:

Um it was, it was scary. I felt like I was never gonna get out. ‘Cause you see in movies, people in mental institutions, and they’re there for the rest of their lives. And I felt like I was never gonna live a normal life, and I was always gonna be surrounded by people who weren’t doing well, like I wished I was around. And um, but over time, I got stronger, and the–I was on a bunch of different medications, and I finally found ones that were starting to help a little. So in the end, it turned out okay. We took me out AMA [against medical advice] because no one wants to be there longer than a year, but we stayed in Atlanta because, just in case I relapsed, that we could go back to the hospital.

It was in Atlanta where Jeanne was diagnosed with schizo-affective disorder, a condition in which an individual experiences symptoms of schizophrenia as well as symptoms of a mood disorder. Like many young people who are diagnosed with mental illnesses such as schizophrenia, Jeanne struggled with accepting the diagnosis as real:

Jeanne: When I was first diagnosed with schizo-affective, my doctor made me tell my mom and I, I couldn’t do it. I just said no, I’m–I have major depression. I didn’t wanna admit it. But now, looking at everything and doing all the research I’ve done, I’m schizo-affective, and that’s just who I am.
Interviewer: What made it click for you, helped you with the acceptance? Can you think of anything?
Jeanne: Meeting other people that are schizo-affective and seeing the similarities in our lives is definitely what helped.

As described above, Jeanne’s symptoms include experiencing both auditory and visual hallucinations (i.e., hearing and seeing things that are not real). While most people with schizophrenia only experience auditory hallucinations, Jeanne does see things on occasion. There is one visual hallucination that she has termed “scary man”:

He’s not human; I can’t quite describe what he is. He doesn’t have, like, a face like we do or he doesn’t talk like we do. I just happen to understand him.

Even though she understands him, Jeanne would prefer not to see him:

Jeanne: I don’t wanna see any of this.
Interviewer: How come?
Jeanne: Because it’s, it’s not normal, and normal’s what I wanna be.

Despite Jeanne’s awareness that her hallucinations are not generated by the external reality, she has a deep level understanding of subjective reality and that despite it being subjective, our individual subjective realities shape how we all experience life:

Jeanne: The only thing that I, I feel really strongly about is that reality is not a set thing. Everyone thinks reality is one set thing, but it’s not. My reality can be different than your reality. And I know, like, everyone says, “Okay, your voices aren’t real,” “Scary man’s’ not real,” but they’re real to me. They are definitely part of my reality. So, I just want people to know reality is not, like, a set thing. It can change from person to person.
Interviewer: And why is that important for people to know, to know that?
Jeanne: Because people say if it’s not real, it shouldn’t hurt you, but it can hurt you.

Listen to the above excerpt here:

To avoid being hurt further, Jeanne has been selective about who she shares her diagnosis with. While her family and boyfriend are very supportive and understanding, she fears the stigma associated with mental illness and how others would treat her differently if they knew of her mental illness:

With stigma–people think people with mental illnesses are like what they see on TV, and it’s not true. It’s not like that. Or they think people with mental illnesses are violent, and that’s not true either. Half the people would probably be really surprised to find out that I have a mental illness. Because I’m not like what you see on TV, not like what you see on the movies. I’m just an average person living a average life. I just happen to have a little secret that most people don’t know about.

Listen to the above excerpt here:

Later in the interview, she expands on the above point about stigma:

I don’t want people to think I’m–any different of me, especially people at work. I don’t want them to think I can’t do my job because I have a mental illness.

Listen to Jeanne discuss examples of how she has been treated differently​ here:

​
Despite her concerns about and actual experiences of stigma, Jeanne has recently been opening up about her mental illness:

But I’m trying to let it out now. Like the Frozen song, “Let it Go,” because I do want to, like, help inspire people or maybe help people realize, like, “Hey, you’re not alone. Don’t try to kill yourself, you know, you can get past this”… And I think I’m ready to just stand up for myself and other people with mental illnesses and show that we’re just your average, everyday people. Our reality is just a little different.

Although she is attempting to accept herself and her mental illness more, Jeanne still has a strong desire for her life to be normal. She feels that her mental illness has taken away the sense of normalcy from her. For example, the medications that Jeanne takes every cause her to sleep for a solid eight hours and, as a result, require her to abide by a strict sleeping schedule:

So, I have to base my life around how much sleep I’m gonna get and that’s kinda one of the things I hate. It’s, like, most twenty-three year olds are staying up late and having to get up early and enjoying things, and I have to get eight hours of sleep every night. So I don’t really get to be like a normal twenty-three year old… It doesn’t feel like I’m living life. It’s–I feel like I’m–I have to schedule everything, and I have no spontaneous ability.

The medications affect other parts of Jeanne’s life beyond just her sleep schedule. One common side effect of anti-psychotic medication is weight gain. Since she began her treatment, Jeanne has gained around 80 pounds, which contributes to her feeling that she lacks of control over her life as a result of her mental illness. However, despite the unpleasant side effects, Jeanne believes the medications are the most beneficial part of her treatment.

Jeanne and her mother have since moved back from Atlanta to Cincinnati to be reunited with the rest of their family. She is currently a facilitator at HOPE Community Center, a peer run organization for individuals with mental illness in Clermont County, Ohio. Jeanne is also a certified peer-to-peer instructor with the National Alliance on Mental Illness (NAMI). She enjoys the peer-to-peer work because it helps her to not feel so different from others:

Jeanne: It’s nice to not feel like an alien. It’s nice to know that there’s other people going through the same thing as you, and we’re all supporting each other and helping each other.
Interviewer: Helps you feel like you have a place where you fit in.
Jeanne: Yeah. One of the people said in the training, “I found my herd,” and that’s my favorite quote ever. It’s my herd. These are my people.

Jeanne hopes this volunteer work will assist her in achieving her career goal of working in the mental health field:

I would love to work on the psych ward of the hospital and be that person that inspires people to keep living because every time I’ve been to a hospital, there’s that one person that encourages me to just keep living and not try to kill myself.

​Mary is a 56 year old divorced woman who grew up in and currently lives in Cincinnati, OH, although she lived in Los Angeles for several years in between. She has received multiple diagnoses including paranoid schizophrenia, schizoaffective disorder, bipolar disorder and severe depression, and what is unusual about her case is that her symptoms did not appear until she was into her fifties.

After Mary graduated high school, she attended court reporting school for two years and for the following sixteen years, she worked as court reporter. At the age of thirty-six, she decided to quit her high paying job in Cincinnati and moved to California to pursue her life-long dream of becoming an actress. Interestingly, Mary began her acting career playing a court reporter in a number of television programs (Murder One, Ally McBeal, The Practice) and movies (I am Sam); however, her acting career never really, in Mary’s words, “took off.” Nonetheless, while she was trying to get her acting career going, Mary also worked as an assistant for bestselling authors Sidney Sheldon and Mark Victor Hansen as well as famous hairdresser Vidal Sassoon. Despite the steady income, Mary and her then-husband, who was verbally and emotionally abusive, found themselves struggling financially. During this already stressful time, Mary’s mother also became very ill.

I’ve come to believe a great deal in the power of the spoken word, and I used to always say to my mom, “If anything ever happens to you, I’ll go crazy. They’ll have to lock me up and throw away the key. I don’t know what I’ll-what I’d ever do without you.” So she was getting sick. I started getting sick as this pressure was mounting–the financial pressure, we had an eviction notice on our door in the apartment that we rented. And my husband was doing nothing about finding work or bringing money in, and all the pressure was on me.

In addition, Mary was also experiencing stress from her job, feeling that she was in over her head. It was at this point that she started to become delusional.

So at some point, I really began to crack. And it seemed as though it happened overnight. I started having delusions… I believed that the devil had made me pregnant. I believed that he had put five sensors in my body so that I could be tracked wherever I went. I believed that the sensors would eventually become cancerous, and I didn’t care because by this time, I really felt like I wanted to die. I had so many delusions. I believed that I had smoked crack-cocaine, which is hilarious when I look back on it because I wouldn’t even know where to buy crack cocaine or who is a crack cocaine dealer. But this was one of my delusions that I was so bent on. And I was a sober alcoholic, sober for twenty-three years at the time. So I kept obsessing on this and saying to everybody, “Do I need to reset my sobriety date? Do I need to reset my sobriety date? You know, ‘cause I’m sure that I smoked crack cocaine.” And my friends kept saying, “Well, we’re sure that you didn’t.” I’d say no. And I embezzled all this money–because there was, like, little kernels of truth in the things that were my delusions, small kernels of truth that just got completely blown out of proportion. Like, a friend of mine was an employee of a world famous artist, and I believed somehow that I got access to that artist’s financial accounts and that I embezzled millions of dollars from him. Well, how in the world could I have embezzled millions of dollars if I didn’t even have millions of dollars? And how would I have had access to his accounts? But these are the kinds of things that I was so sure of that no one could convince me of otherwise.

Listen here:

The onset of this difficult time for Mary came on very quickly, over a span of a couple weeks to a month, which was as Mary describes:

Very scary because I went from being this highly productive, working all my life, never even had taken an anti-depressant, fifty-three years old, never had–. I mean, I’d, I’d seen the therapist before, you know, to work through my issues, my family of origin kind of issues and my alcoholism issues, but never anything like this, and never had I taken a pill for anything.

After a period of hospitalizations in California, Mary’s husband reportedly decided he did not have the time or the means to take care of her, so her family decided to fly her back to Cincinnati to get her the help she needed. When Mary arrived in Cincinnati, her family discovered just how dire her situation was:

And they thought that I just needed outpatient help at that time. And I was here about two days when it became apparent that I was very, very, very sick. And I was either catatonic, not speaking, not communicating, or I was sobbing my eyes out. And I got admitted to University Hospital and they just–they had a hard time knowing what to do with me. There was a psychiatric nurse there who had been a psychiatric nurse for thirty years, and she was wonderful. And she said to my friends – at the time I think she thought they were my family – but she said to my friends, Linda and Beth, she said, “You know, usually when I see someone I can look and say bipolar disorder, schizophrenia, borderline personality.” She said, “I can’t, I can’t diagnose anything because she presents with so many symptoms of so many different disorders. It’s very difficult to say.” And the fact that I was fifty-three years old and had no history or any problems and that this came on so suddenly was all very bizarre.

During her eight to ten week hospitalization in Cincinnati, Mary’s mother did pass away.

And I didn’t remember this – somebody told me this about a month ago – that they brought me in a wheelchair, that I was so feeble I couldn’t even walk, and so frail and bent over and I remember them saying, “Oh, here comes Mary. Clear a path for Mary.” And they set me, they wheeled me into her bedside, up to her bedside, and I put her hand in mine or somebody put our hands together, and she held my hand and she breathed her last breaths and died. So, I wasn’t well enough to attend the wake or the funeral. I didn’t–wasn’t even aware that she was dead. I was in and out of that awareness. Somebody sent me sympathy flowers in the hospital, and I remember looking at them and not really understanding what the sympathy flowers were for. It took me a long time to be able to grieve my mother’s death because I was so sick when she died. I was incapable of grieving anything.

After she was released from the hospital, Mary lived with her brother for a time, but when she became more unstable, she began living in a halfway house. Mary explained how during her stay at the halfway house, her condition did not improve:

I wasn’t getting any better, I wasn’t going to therapy, I wasn’t able to go to meetings​. I wasn’t able to do anything good for myself and so I came up with a plan that I would take my own life.

Mary’s plan involved flying back to California and using her husband’s car as a tool to take her life:

I didn’t tell my husband what I was gonna do. I didn’t tell my plan at all. But I waited until he got in the shower, like several hours after I got home, and I took his car keys, and I drove out to Malibu Canyon. And, you know where you see on–in movies, the steep cliffs in California, and I found this–drove up and down the canyon three times looking for the steepest cliff I could find. And I looked for an overlook that had the rocks spaced far enough apart that I could get my car all the way through it, my husband’s car. And so when I finally found the perfect place, I put the car–I was in the convertible, I had the top down, and the windows down–put the car into reverse and I shoved it into forward, into drive, and slammed on the accelerator and went sailing over the cliff. And that was the beginning of coming back to life, as crazy as that sounds. It wasn’t because I was grateful that I was alive because I wasn’t. I was angry. My life didn’t flash in front of me. I expected it to. I fully expected it to ‘cause I thought the bottom of that ravine-. Now there’s a police report that I got that said it was a 300 foot drop. Google Earth says that location’s a 200 foot drop, but, so it’s somewhere between a two and three-hundred foot drop, and I went straight down. And at the bottom of the ravine, I hit a rock, a great, big, huge rock and that totaled the car. And that also broke my back–that impact. I had a fifty percent compression fracture to L2 and that was it. I didn’t have a scratch anywhere on my body, anywhere on my face, my neck.

Listen here:

While Mary was initially upset that her plan had not worked, this was the turning point that set her on the road to wellness. She decided to remove her husband from her life to relieve herself of the abusive relationship and to return to Cincinnati. Once released from the hospital, she spent some time in a nursing home while recovering from her back injury.

And it was in the nursing home that I started to get a little bit of gratitude. ‘Cause I saw people without limbs who were waiting for transplants. I saw a lot of alcoholics who had lost their limbs due to diabetes from the alcoholism, and they were probably never gonna get the transplants that they were waiting for. I saw people with Alzheimer’s, you know, all kinds of dementia. And I was one of the youngest people in there. And I kept remembering when I was in Kemper House, there was a guy there who was an angel. His name was Christian Smith. And he would say to me, “You’ve got it in you to get well. You’ve got it in you to recover. I know you do. You just have to be willing.” And he would talk to me about mindfulness, and he would work with me on my breathing, and he tried so hard to get me to go to GCB because he knew the classes there would really help me. And, you know, he wanted me to go to therapy and things like that. So when I was in the nursing home–oh, and he kept saying to me, “You know, if you don’t take care of yourself, you’re either going to end up in a nursing home or an assisted living or a group home. None of those are good options for you. You’re far too young and you have too much life in you left to live.” So here I am in the nursing home, going, “I ended up in the nursing home. How did this happen? And what am I going to do about it?”

Also when in the nursing home, some of Mary’s loved ones expressed how upset they were with her for trying to take her own life. This possibility of her loved ones cutting her out of their lives also helped encourage her to try to get better.

So something in me said, “You’ve gotta get well.” And so I started asking people for their life purpose, “What’s your life purpose? What’s your life purpose? What’s your life purpose?” Because I knew if I didn’t have a life purpose, what point was there in living? And my brother Joe said something to me that was so powerful and yet so simple. He said, “My purpose in life is to see to it every day that every person that I come in contact with has a slightly better day for having, for having had an exchange with me. So whether it’s a perfect stranger at the grocery store, or my barber, or someone at church, I always say ‘Hello, how are you?’” And so he acknowledges people, and that was a life purpose I could live with. At the time I thought, “I can do this.” So when I finally was ready to get out of the nursing home, I saw my case manager and I said, “I’m ready to do whatever it takes to get well. I want to go into DBT therapy, I want to have DBT skills group, and I wanna get back to meetings. I wanna get my life back.” And that’s exactly what I did.

Listen here:

When Mary returned to ​meetings and found​ a new sponsor, she was able to realize that she contributed to the problems in her relationship with her ex-husband just as he had. This awareness allowed her to begin to see her role in her illness as well.

And when I realized that, I felt so free because I realized if I had a part in the beginning of my unraveling, I also have a part in my recovery. So I also have control over–and I have a big part in my recovery, but I have some control over whether or not it’s going to happen again. By virtue of the fact I have these, you know, I have DBT and I have the twelve steps and so now I’m very diligently working step six and seven. And in order to find–I had to really look at what was my part in the marriage because he was so abusive, and I was this angel who’s out working and doing this and that, but really– My part was things like– I knew the morning, I knew the morning of the day that I was marrying him that I was making a big mistake, and I went through with it anyway. There were many times throughout the course of the marriage when I felt like I was being told to leave and I stayed. And so there were a lot of ways I participated in the behavior that– And I’d shout just as much as he would shout. We would get into these horrible shouting matches and things like that. And so, I don’t want to live that way ever again. And in a strange way, (pauses) I feel like this was my calling all along and that I had to go through the mental illness in the bizarre way that I did with many, many diagnoses and, you know, at my turning point being what it was, that I had to go through all that so that I could be an effective mental health advocate and speaker.

Listen here:

At the time of this interview, Mary was working on her dream of becoming a mental health advocate. Since then, she has realized that dream by participating in a number of speaking engagements about mental illness and sharing her story via NAMI’s In Our Own Voice speaker series. Mary has also joined the team at The Schizophrenia Oral History Project, volunteering her time and skills as a transcriber. And, she contributed to a Master Class titled “Patient and Family Engagement and Mental Health” sponsored by Partnership for Patients based in Washington, DC. Click here to listen to the webinar of that class.

Reflecting on her own recovery, Mary offers encouragement to others struggling with mental illness:

And people need to know that mental illness does not need to be a lifetime diagnosis. And people can and do recover from mental illness every day. And people who are sick need to know that.

Here is a picture from Mary’s bus card during the height of her difficulties:

And here is a more recent photo of her after recovery, posing with the Sidney Sheldon book she worked on:

​Susan is a 50 year old Caucasian woman living independently in Maryland. She has been living with schizoaffective disorder (a combination of schizophrenia and mood instability) for 20 years, but has been stable on medication for about 15 years. She attributes her wellness to many things: supportive family and church members, her faith in God, an effective medication regime, and a gifted psychiatrist. And although she does not specifically identify them as supports, her tolerance of a difficult treatment plan and an untiring persistence to contribute to the world in the form of her writings are additional important elements in her stability.

Susan was in graduate school working on a PhD in 17th Century English History when she had her first psychotic episode; it occurred after trying a diet drug to help her lose weight. Although this is not a typical cause for schizophrenia, current knowledge does suggest that there are some people who are born at higher risk than others for the illness and that some kind of trigger causes the illness to manifest. In agreement with her doctor, Susan believes that she had a previously undiscovered proclivity toward mental illness and that it was the stimulant in the diet drug that triggered schizophrenia to manifest in her case.

Like many others, Susan’s life now that she has the illness is very different from her life beforehand. Before she got sick, Susan did many things:

Susan: I went to college. I studied for a year in England. I got out and I taught for a while. Then I went back to graduate school in history, and then I got sick and then it was like–I guess the world crashed out for me.
Interviewer: Everything stopped?
Susan: Pretty much, for many, many years. I had episode after episode and they lasted for months. It was a pretty hard time. And now I’m much better, but I guess I tend to think of my life now as this fortress; this is what I have built since then.

Although she did hear voices a couple of times, Susan’s most prominent symptom was delusions (beliefs that are not in contact with reality):

At first when I got sick, I broke from all my friends and from school. I actually signed myself out of graduate school because I thought the end of the world was coming. I had delusions. And I thought I had to fight against it. I thought I was no longer allowed the privilege of getting an education. I wanted to get my PhD, and so once I had broken with everyone, I drove around the country on what I thought was like a little tour of resistance fighting, and I did my little thing. I read signs and I looked at license plates, and I tried, to the best of my ability, to break codes that I thought were in the environment meant especially for me. And that I could help fight against evil in the world in this way.

Listen to the above excerpt here:

Susan expands on her description of the delusions as well as her insights about them here:

​Susan: I guess that’s another thing to note. No matter what your education level or your attainments or what you’ve been doing in your life, the delusions are frighteningly real and they appear to be, they appear to be more real than reality has been for you previously. Does that make sense?
Interviewer: More vivid?
Susan: More true. Yeah.
Interviewer: More true. Okay, good.
Susan: So, I had that, and then I would see people shuffling around on the street with mental illness, and I thought they were out to get me because I had paranoia as part of my diagnosis. And I thought I was either going to be turned into them or they were going to feast on me like zombies, which was a bad thought.
Interviewer: Frightening too.
Susan: Yeah, very frightening, and also you’re all alone. There’s no one there in your head with you. I had no connection to anyone. I had broken with my family. Even though I knew it broke their hearts, I thought they knew I had to do it and it was—I was very angry that they made it hard for me and tried to dissuade me from breaking with them. But—I don’t know if other people talk about their delusions, but I believed I was not allowed to. It’s a state secret.
Interviewer: Some folks have felt–had the experience that if they did talk about their delusions, some harm would come to them or a family member. Did anything like that occur?
Susan: I did feel like that. I felt like harm would come to the nation. That was like the French Resistance, or I was in the French Resistance, and no matter what happened to me, I had to be brave and soldier on. So that went on for seven months until the police finally caught me. But it’s, it’s always kind of surprising to me to think about it. You know, the delusions are obviously–and they’re almost laughable, they’re so extreme, and so unbelievable. And you accept them completely uncritically, which is interesting but also strange. And nobody could dissuade me. Nobody could tell me different, that this wasn’t what was happening.

Listen to the above excerpt here:

Unfortunately, although the illness did prevent Susan from getting her PhD, it has not stopped her from writing:

Susan: I was desperate to be a professor and to write books. And so I was kind of driven by that for several–or many years. But it wasn’t all, you know, horrible. I was able to study to some extent and continue in my field for a long time after I got sick. I just couldn’t do so at the level of a PhD candidate.
Interviewer: That was your dream?
Susan: Yeah, it was. It was all I really wanted, yeah.
Interviewer: What would you say your dream would be now?
Susan: Now about, after say 15 years, I’m not able to read well, but I am able to write, to continue to write, and so I read very slowly, and it’s difficult. So I’ve spent a long time doing what would take somebody maybe a month or two, and I’ve written articles for magazines, historical articles. I’ve just finished a poetry book, a Christian poetry book, and I’m working on making it into a devotional book to see if I can get it published. And I’m in the middle of writing a murder mystery set in a mental hospital, and also writing children’s poems, so I guess I have three projects.
Interviewer: Very, very different projects.
Susan: Yeah, I know. There’s a lot (laughs). As if one wouldn’t be hard enough for me, I have to have three. So, my dream now is to, you know, one by one to finish off these projects and to have them published. Not so that I’ll be famous, but it’s something that I love to do and something that’s meaningful for me, and something where I feel that I have left some kind of mark on society…

Listen to the above excerpt here:

Susan wrote her own account of her experiences with schizoaffective disorder in an article published in Schizophrenia Bulletin in 2003 (“First Person Account: Living with the Delusions and Effects of Schizophrenia”). Her most recent contribution to this same journal was in 2014, when she wrote what she calls an “encomium” to her former psychiatrist (“For Wayne S. Fenton, in Memoriam”).

Susan’s motivation for sharing her story with The Schizophrenia Oral History Project is to aid in educating others about mental illness with the hope that it may help to elicit empathy instead of fear:

​Susan: I wanted them to know about mental illness, that it’s a devastating diagnosis. For many people, for most people I’ve met, your life is–essentially as you knew it–is over, and you have to work within very limited parameters ever after. Many people that I’ve met don’t recover at all, and I know people who went to some of the top schools in the country and they can’t function anymore, and you would not know that they had some of the highest IQs in the nation. Also I think that the nature of the illness is such that, you know, we end up without hospitals now. We end up seeing people on the street, and I think that’s a terrible crime that our society—I wouldn’t say we commit, but that we neglect the mentally ill. And the people who we see on the street are probably going through hell. I went through hell, and, you know, to others—
Interviewer: Did you ever end up on the street?
Susan: Almost. And the people there, you know, they look dirty, they’re ragged, they’re frightening, but really they’re a sickness like diabetes or chronic illness. And it’s a hard treatment to take, and most people don’t want to take it. I certainly didn’t because there are so many side effects associated with the medications. And so now our mentally ill end up often on the street or in jails, and that’s not a way to treat somebody with a chronic illness. To shunt them aside and to be horrified by them and to let the sick basically, you know, devolve into animals almost. Because without medication that’s what happens to you. You begin to be stripped of your humanity little by little.

Listen to the above excerpt here:

Shortly before recording her story, Susan visited Disneyworld, and her observations there serve as a model for her wish for greater integration of people with mental illness into society:

​​I believe that the mentally ill should be incorporated into society the same way we do handicapped people or people with diabetes or, you know, other chronic diseases that they ​have to deal with–. I really love Disneyworld. My father would always take me to Disneyland when I was young. And when I went recently to Disneyworld–that’s the photo I’m going to send you. My mother and I went to Disneyworld. I was really struck by the way they incorporate the handicapped into the general population. They help them go on rides first, they have special access for them, and everything doesn’t stop for them, but they’re just smoothly put into the process and they’re part of the crowd. And I thought that was really a beautiful thing that they did, including people who would have difficulty participating. And that struck me and always made me think of that’s the way I would like to see the mentally ill part of society and helping to further that, further society and to bring understanding for people.

Here is a that photo of Susan and her mother from their trip to Disneyworld.

Vickie O’Bryant is 56 year old, divorced woman who has lived independently in her current apartment for seven years. Vickie enjoys playing guitar, singing in her church’s choir, socializing with friends, drawing and writing.

As a child, Vickie suffered from dyslexia, which made learning to read very difficult.

Listen to Vickie speak about this experience here:

​Fortunately, she had supportive parents who helped her get through her schooling. This paid off, as later in life Vickie not only gained employment writing reports for a failure analysis lab, but she has also written a book about her experience with schizophrenia called Searching for Light.

Although school was a struggle, she did graduate. After high school, Vickie decided to enlist in the Air Force, where she spent almost four years as an administrative specialist. After her time in the Air Force, Vickie ​was faced with the difficult decision of whether to stay there in Denver, Colorado, or to return home to Columbus, Ohio:

My parents were living in Columbus, so it was a hard decision because I had made friends out there. And one friend was, I was very close with. She was old enough to be my mother, and I was very close to her. And she was my Bible study teacher, and she taught me a lot about the Bible and about life and how to take care of myself. And she was such a good friend that I decided that I wanted to stay out there and get a job. And that hurt my family. And, I really didn’t mean to hurt my family. But I did because I was young and I didn’t know any better.

In Denver, Vickie first worked as a parlor maid in a hotel, next in an employment office and then in a failure analysis lab, where she was responsible for typing the final reports. While she enjoyed the job, it was a stressful time for her, as she was working a lot of overtime hours. In 1985, Vickie began having nightmares. She did not feel safe anywhere and developed delusions that someone was trying to kill her:

Wherever it was, either at work or at the grocery store, or coming home on the bus, I was just frightened. And, I was really believing these nightmares. And, I was on a diet. I was trying to lose a lot of weight, and I lost a lot of weight. And then I was–. At one point, I worked overtime, and I was working eighty hours a week. I was working twelve hour shifts every day, and I did that for, like, maybe two or three months. And I don’t know if that was part of the reason why I got sick–I’m sure it probably was. I was only twenty-six years old or twenty-seven when that happened. And I was afraid. I was so afraid I would just keep–I kept everything inside. I didn’t tell anybody. I didn’t tell my friends. I didn’t tell my parents. I kept it all inside and I didn’t tell anybody. And the worst thing was I just gave up hope. I left my job and I told–I called my boss the day I was leaving, and I said I didn’t feel good and I wanted to go to the hospital. And it was on a weekend. This was Friday and I said, “Oh, I should be back Monday. Maybe I’ll be better Monday morning.” But even though I told him that, that’s not what I really did. I called my mom to make sure she was home, and she said she was gonna be there all day. And I told her I was gonna go to work. She asked me what I was gonna do, and I said, “I’m gonna go to work.”, but I just told her that because I was–didn’t want to tell anything. I just kept it all inside because I was afraid that if I did tell someone, it would happen – that somebody would kill me.

Listen to the above excerpt here:

Vickie returned that day to Columbus to stay with her family, but she refused to talk to anyone about what she was going through. Even though she felt more comfortable with her family, she still did not feel safe enough to tell them what was really going on with her:

Vickie: I didn’t tell her then what was going on. And things was getting worse. I was just–things weren’t making sense to me. My sister came to pick me up and take me over to her house, and I spent a week with her and my niece and my nephew; they were small children. And I was just so scared. I didn’t, and my sister–we were really close, and I used to tell her everything. I would always tell her everything. And, but I refused to tell anybody anything. And, it got worse. My body was breaking down, I mean, my mind was just breaking down, and I was scared. I would go into the shakes, and I wouldn’t tell anything. I wouldn’t say anything.
Interviewer: Still too afraid to say anything?
Vickie: I was very afraid. And I remember that I was at my parents’ house, and I wouldn’t sleep by myself. I would go into my parents’ bedroom and sleep on the floor. I was so scared, and I was afraid to sleep, and I got to the point where I was having trouble going to the bathroom and, not being able to use the restroom. Not being able to eat very much. Finally, my brother-in-law, my sister and my brother-in-law came because we were gonna go eat out. And I didn’t go. I refused to go eat out. And my sister and brother-in-law went behind, you know, went in the other room, and my sister told my dad, “This is strange. Maybe you should take Vickie to the hospital.” So that’s what they did. And they took me to the VA hospital, and I was there for two months.

It was at this hospital where Vickie was diagnosed with paranoid schizophrenia and began treatment for the first time. Two years later, at the age of 30, Vickie got married. They had a son the following year. Vickie described having problems as a new mother, making “all kinds of mistakes,” and she was diagnosed with postpartum depression. She was also still having difficulty with schizophrenia, going in and out of the hospital, so she and her husband eventually divorced. Her husband was awarded full custody of their son, and Vickie received visiting rights. After the divorce, Vickie began a relationship with another man, and she gave birth to second son. Like before, Vickie was unsure of her parenting abilities:

I was having trouble. I smoked cigarettes real bad, and I was a bit leery whether I should take care of my baby. I wanted to take care of him, and I probably should have tried. But instead, my cousin wanted him. And she asked me if I could give him to her. And I said, “Yeah. I think that would be a good idea.” She wanted to take him and raise him. And she said that I could get to see him any time I wanted to. And I said, “Yeah, that’s a good idea.” My parents thought that was a good idea too. And then I signed papers. And I didn’t know what I was signing ‘cause I really didn’t read them and my cousin said that I was just signing some insurance papers. And little did I know that within five or six years later, I wouldn’t be allowed to see him at all.

After the divorce, Vickie began writing a book about her struggles with schizophrenia and depression, but it took her almost fifteen years to complete it. Due to multiple computer problems that resulted in her work being deleted, Vickie had to write her book four separate times. Vickie’s persistence did eventually pay off; her book has been published and is available for purchase on Amazon via the following link: Searching for Light​. She derives great pleasure from this validation of her efforts:

Vickie: Yeah, it was worthwhile to me to do that and it was one of the–. I mean, that was the top accomplishments that I’ve ever done in my life is to write a book, and I’m so proud of myself for that.
Interviewer: Can you say a little bit about why that’s important to you, why that sense of accomplishment is important to you?
Vickie: Well, I feel like I can be up there right along with the other people who’ve authored books. Right up there with, you know, people who have got their books published and that’s just really important to me. I mean, I really enjoy the pat on the back from family members and from my friends and at church and–. And when I tell them I wrote a book, and they just open their eyes and they say, “Wow! You? You wrote a book?” And I said, “Yeah, yeah I did.”
Interviewer: That must feel good.
Vickie: It does! It feels good. It feels like wow! And it makes me feel good.

Listen to an expanded version of the above excerpt here:

Vickie has been doing well for a number of years, having not been hospitalized since 1998. Currently, her focus is on maintaining a clean apartment, cooking for herself every day and saving up some money to buy a car. Writing her book was one dream that she has recently accomplished. Her other dream involves the car that she is hoping to eventually get:

And I have another dream, to get a car and to be able to have a new freedom to take—. I have a friend that’s in a wheelchair, and she can’t always get a ride to church. And I have a dream that I can take her to church, pick her up and take her to church and take her home. And I have a dream that I can also use my car to get a job and get back in the workforce and get a little more money ahead and just try to live a better life for myself.

As she identified above, Vickie’s second dream involves helping others. Helping others is also why she wanted to tell her story:

​​Vickie: And I like to be a witness to other people to let other people know that if I can do it, then they can too. Other people can do that.
Interviewer: Is that why you wanted to talk to us today?
Vickie: Yeah.
Interviewer: Okay. Can you tell us a little bit more about that?
Vickie: About–?
Interviewer: Why you wanted to participate in this project, tell folks your story.
Vickie: I wanted to help people. I wanted to tell people that it’s not easy, and I wanted to tell people to just stick with their medicine and stick with going to the doctors and stick with telling the doctors everything about what’s going on and not being afraid to say everything. Open up and not be afraid. And not be afraid to tell others the mistakes we make and being willing to say it’s okay. It’s okay. I made a mistake and it’s okay, and I’m gonna do better. And that’s what I wanna tell other people.

Robert Fischer is a 50 year old man who has enjoyed living in his family home his whole life. He lives there with his mother, sister, two dogs, four cats and fish. Robert had a typical childhood playing baseball, taking accordion lessons, and participating in Boy Scouts. At age 10, he started helping clean up at his father’s auto restoration shop on the weekends. This eventually developed into him learning the trade himself:

Robert: I used to work at my—Queen City Alltop, my dad’s shop, and I worked there for 27 years. And I helped my dad out a lot, and I installed stuff for him.
Interviewer: What kinds of things did you install?
Robert: I installed convertible tops and carpets and headliners and door panels and seats and deck shelves and dashes, and I did carpets, convertible tops.
Interviewer: What was that like, to do that kind of work?
Robert: It was nice. I liked talking to the customers and all that, and helping them out, and it was really nice to work there.

Listen to the above excerpt here:​

Robert worked in his father’s shop until 2005, when his father’s failing health forced them to close it. Some of Robert’s best memories were of the times he spent with his father, who passed away shortly before this interview:

Robert: He passed away, and he’s in a better place now. He’s up in heaven with God, and he’s probably dancing up there.
Interviewer: Dancing? Why do you say that?
Robert: Well, I just thought, well, he couldn’t walk here so he probably–. He never danced before, but I thought that he’d be dancing now.

Different from many individuals with schizophrenia whose symptoms prevent ongoing employment, Robert has worked most of his life. After his father’s shop closed, Robert took a break and spent some time pursuing one of his great joys: travelling out west. He is proud to report having visited Yellowstone National Park, the Grand Canyon, Pike’s Peak, Grand Teton National Park, and Jackson Hole, Wyoming. Then, in 2007, he began working at Kroger, where he is currently employed:

Robert: I worked at Kroger’s for just about seven years. And I like talking to the customers and greeting them, and I really like working for Kroger’s. They’re a good employer, and they help you out a lot and they supportive and they help out. I’m very happy to work there.
Interviewer: And you work, you told me earlier, 27 hours a week. Is that correct?
Robert: That’s right, 27 hours a week.
Interviewer: Um-hm. And doing what kinds of things?
Robert: I bag groceries. I reshop. I bring the carts in, clean the bathrooms, and I talk to the customers.

Robert graduated high school in the early 1980s and started experiencing visual hallucinations in 1994. These symptoms lasted for a few years, resulting in a two week long hospitalization, until his mother decided to take him home. Although Robert has had to cope with symptoms of schizophrenia for a number of years, he has not suffered from any for the past eight years and reports feeling “normal” now. Robert attends church weekly and identifies his faith as one thing that helps him through the more difficult times:

Robert: I believed in God, Jesus, and I said, “I’m gonna get through this.” And then my case worker was telling me–. This was after that. This was pretty many years later, but he said that I was experiencing kinda hard feelings inside of me. And I was coping through this and he says, “How did you get through it? How come you didn’t go to the hospital?” And I said “Well, I cope with it because I know things will get better.” So I kind of toughed it out.
Interviewer: You know, seeing the scary things that you were seeing and experiencing, I would think that it would be hard to be able to just say to yourself, “It’s gonna get better.”
Robert: Well, I believe in God and Jesus Christ, and I just think things will get better because He told me so.

In addition to his faith, Robert identifies his family as another source of support for him. He cares very much for his mother and three sisters, helping them out whenever he can, but his desire to help others is not limited to family members. Robert has a strong desire to help humanity; it is very important to him to be continuously helping others.

Interviewer: Well, what are some things that are important for you, in your life?
Robert: Important?
Interviewer: Um-hm.
Robert: Helping my family out.
Interviewer: Yeah.
Robert: Helping my pets, helping my friends, helping the people in the community, like when I’m at Kroger’s and bagging their groceries, and even taking it out to the car and putting it in their trunk, the car or van that they got. And I just like helping people out.

During Robert’s interview, he elaborated on the enjoyment he receives from helping others, whether they are family members or members of his local community. When asked why he focuses so much on helping others, Robert replied:

I like helping people out because you give back to the people and God rewards you for it. He rewards you, not in money, but He rewards you in the spiritual gift that you get. And I feel it present inside of me.

In addition to helping people in the community, Robert also wants to educate others about what people with mental illness are really like:

Interviewer: Can you tell me why you decided that you wanted to share your story with our project?
Robert: So we could get out what mentally ill people are like and not like what they say on the news. I think that we’re totally different than what they show on the news.
Interviewer: In what way?
Robert: That we’re good people and we’re just like anybody else.
Interviewer: Yeah, what is it-? How do you feel when you see those kinds of reports on the news that are wrong?
Robert: Well, I just thought that just a low percentage of people are like that. Is it like one percenters, and they make it bad for all the good people.

Listen to the above excerpt here:

Since being interviewed for The Schizophrenia Oral History Project, Robert has become an advocate for people with mental illness in his community, regularly passing out business cards about the project.

Ronald English is a 58 year-old man who lives a transient life. He has been virtually homeless throughout adulthood, moving from one rented room to another, or living on the streets. He is highly symptomatic and struggles daily with hallucinations and delusions. In addition, he is a lifelong drug addict, who has now gone two years without using. He is also friendly, artistic, and serious about living a life of integrity.

Listen to Ronald’s description of himself and how he tries to live his life here:

When asked if he has ever been homeless, he responded:

Ronald: All my life.
Interviewer: All your life?
Ronald: Yes ma’m … I’m homeless because I want to be. I don’t like living around no, living with people. I’ve lived in the Drop-in Centers, behavioral centers, the Louis Centers, drop-in centers, half-way houses, boarding houses. I’m a loner. I like being by myself.

The fact that Ronald likes living alone, however, doesn’t mean that he doesn’t like people, or that he doesn’t care what they think of him.

​I like talking to people. I like to express my feelings about what’s going on. I like to be noticed, because if I’m noticed…because I, I don’t want nobody walking around like they don’t see me, what I’m doing, you know, that I’m in the world.

The memory of his grandmother is especially dear to Ronald. He has little contact with his five brothers and six sisters, and his mother died when he was nine years-old. He was reared by his grandmother and when asked to talk about one of his best memories, he spoke of her. As for many of us, it is little things involving someone he loves that form the memories he holds close.

​Interviewer: When you think back on your life, can you think of something that’s an especially good memory for you, something that has happened in your life that you especially like to think about?
Ronald: My grandmother. She died about 5 years ago. She was straight, honest. Someone always told me she was going to heaven someday. She was a spiritual, happy, great lady. She walked with grace. She talked like a lady. She walked like a lady, and she carried herself like a lady. She died. I stayed with her all my life. Since my mother died.
Interviewer: What’s one of your best memories of things you did with her?
Ronald: Going to church with her … and seeing her sitting there with everybody. She sets there, have a cane. She loved those little things in the can with cheese and crackers.

Ronald makes art, and his art forms the core of his self-concept. He believes that his art has meaning and that he is able to communicate with others through his painting and especially by his choice of color.

​Ronald: They’re the colors that I always use … blue, yellow, black, red, and white.
Interviewer: And why is that?
Ronald: Blue is my favorite color … And my yellow stands for the sun, of the soul, and the green stands for peace and happiness, and the red stands for hope and joy. And the white stands for greatness of God’s spiritual love, spiritual, happiness … And black stands for victory shall be mine.

Ronald has been able show his art in several venues in Cincinnati, including with the Homeless Coalition for the Arts and at the University of Cincinnati library. In spite of the pleasure and sense of self-worth that Ronald receives from his artwork, he is clearly struggling in day-to-day life and trying to make the best of it.

Interviewer: What’s a typical day like for you? How do you spend your days?
Ronald: Here (Greater Cincinnati Behavioral). Go to AA meetings. Talk to friends about Alcoholics Anonymous… I’m about 20 years on drug addiction. I ain’t got but two years clean.
Interviewer: What do you do here?
Ronald: I come here and sit around and talk to the people, and get socialized, and dance and sing, and go to groups, and work and play and be happy and happy to come here, and happy to see the people. Sometime I do art. Sometime I just sit around and see the doctor. But I love coming here. The peoples is nice. They friendly. I think they honest.

Listen to an expanded version of the second half of the above excerpt here:

Ronald was eager to tell his story, and it seemed especially important to him that others understand the kind of person he is—the person that he sees inside. He began his interview with the following:

​I’m a man. I try to be a good man, honest man, dedicated, loyal and true … I say I’m a man amongst men, standing tall in the eyes of God … And I want peace on earth towards men. I try to walk like it, act like it, and tell myself like it. I don’t disrespect nobody. I think I’m a nice guy, a honest guy, and a friendly guy. I don’t step on no man’s toes. I don’t stab no man in the back … If I can do something positive to help somebody, I will try. If I can’t do nothing to help nobody, I will ask the Lord to give me the guidance and see the things, the vision to help and do the things that makes things go right … I ain’t prejudiced. I love everybody. I respect myself, and I don’t disrespect. I ain’t never met a man I didn’t like. I smile. I mind my own business. I do things that make me happy. I do things to make people happy. I try to make people happy.

Ronald is very much aware of the years he has lost in drug addiction. He believes that he has done wrong, and he feels a responsibility to try to make up for it.

I went through all kinda housing, people that I hurt, nice – not hurt, not physically – mentally. And mostly, mostly myself. That I disrespected my peoples, my family, knowing that I was out there. You know, society. Looking at folks respecting theyself, going to work. I feel bad about it.​

Mr. Ferguson is a single, mixed race 25 y. o. man. He describes himself as creative and artistic, enjoying to sing, dance and draw. However, despite still being a young man, he has already had several struggles in life in addition to his mental illness:

I was four years old, I got hit by a car, and then I had got abused by my father when I was seven years old to eight years old. I went through a lot of medical problems while I was doing so, while I was being abused.

Despite being abused by his father, Mr. Ferguson has warm feelings for his dad and believes his father, who is now deceased, watches over him.

I understood why I was going through it because I was being hard headed really. ‘Cause I was doing things I shouldn’t have done. But he taught me a lot of things really, and I respect my dad for that. He passed away thirteen years ago. And I miss him a lot, but I understood that he had to go somewhere I didn’t understand. So when I thought about that, I praised that he was passed, that he passed away, because he blessed me in the sense because I’m protected by him… ‘Cause I see him all the time. ‘Cause his spirit is around me.

Listen to both of the above excerpts here:

Mr. Ferguson didn’t elaborate further on his childhood other than to report playing baseball and having several part time jobs in the service industry throughout high school. He enjoyed working, particularly when he was afforded multiple responsibilities, and believes he was better able to focus during that time.

Listen to Mr. Ferguson discuss his experiences with working and during high school here:

It was at age 18 when he was first told that he suffered from mental illness, an experience that was initially confusing for him:

When I had a mental illness, it was tough for me because I didn’t understand what I was going through at the time, and things just started turning upside down on me and I was paranoid, and I didn’t understand what was going on with me. So I really sat down and thought one day, “Why is God penalizing me like this?”

Despite his questioning of God at that time, Mr. Ferguson has had a deep and strong faith in God for a number of years. As seen above (see his message at the top of this page), what he most wants other people to know about him has to do with his faith in God.

Mr. F: ‘Cause God gave me the ability to, and I always praise Him. That’s why I’m talking about him so much. ‘Cause I love him so much, you know.
Interviewer: Have you been religious since you were a child?
Mr. F: Yes, I got saved when I was eleven years old. And, transformed my life totally.

​Although Mr. Ferguson does have one friend he sees almost daily, he does not have many close relationships. He is estranged from his family because they reportedly put him down, and he keeps aloof in general so that others cannot hurt him or call him names. For this reason, he attempts to hide his mental illness from most people around him:

Mr. F: A lot of people don’t know ‘cause I don’t act like it… they don’t understand. And I like it like that so they don’t get to know me so they won’t try to hurt me.
Interviewer: You’re concerned that if they get to know, then they will try to hurt you.
Mr. F: Right.

Despite his interpersonal hesitation, Mr. Ferguson was excited to be interviewed and to have his story told in the hopes that others could learn from his life.

I’ve been through a lot of things throughout my lifetime and I, you know, I learned from a lot of things that I went through…

Kenneth is 49 years-old, and lives in a group home where he was living for 5 months at the time of his interview. Since childhood, he has been impulsive, easily led, and often in trouble with the law. He has a history of setting fires, and his living conditions have been unstable. He has had trouble making and keeping friends. His difficulties do not stem entirely from his schizophrenia, but are related to learning and attention problems as well, and from the use of drugs and alcohol.

Here Kenneth describes his history of getting in trouble from the time he was very young:

Well, I grew up in a neighborhood with rowdy kids, but before that I kept on running away from my mom and dad or running away from the hospitals. I was probated back in the 60’s and I kept on running away …

I ended up on house arrest for a while. And I broke house arrest and ended up going to a psychiatric unit, back in the 70’s, and while I was there I got very out of control and set the hospital on fire—set the whole second floor on fire.

Instead of going to jail for setting the fire, Kenneth was sent to a different mental institution:

Instead of prosecuting me and trying me as an adult, he [the judge] ordered me to go to a mental hospital up in Cleveland called Sagamore Hills Children’s Hospital. And while I was there, I was getting psychological treatment, and it didn’t- While I was there, I set another fire. Some patients gave me matches and told me to start a fire, so I set my room on fire. And then got sent back over a year and a half, two years, while I was there.

And then when I got my act together, I got out of there. In about 1980/1, when I turned 18. And I went to my parents’ house where I stayed almost a year and a half, until one day I picked up a chair and threw it at the window, and my mom called the police and I ended up at the psych unit at University.

Listen to the above excerpt here:​

Kenneth is aware of his impulse control problems, and they form a central part of his life story. He also understands the negative impact they have had on his life. He describes his actions with regret, but without any understanding of how he might have changed things or what he could have done differently. He seems to feel relief at the fact that he has had no such problems recently.

Interviewer: When you look back at all those things, Kenneth, how do you feel now?
Kenneth: Well I’m glad it’s mostly clear, but I still have a tendency to get angry and I had one when I was staying with my mom for a while, before I went to one of those motels. I had a temper with her. You know, I used vulgar words. I’m better than I used to be. I don’t have any more problems getting angry and breaking things or threatening anybody or anything.

Because of his psychiatric history and hospitalizations, Kenneth has received very little education.

Interviewer: How did you get along in school when you were younger?
Kenneth: I never went to school. I had tutors. Well I had one tutor just for a very short time, then I had [another] tutor for several months that would tutor me two or three times a week. I think it was like fifth grade work and that’s about all.

While Kenneth has been able to stay out of the hospital for the last several years, his life remains difficult. He is heavily medicated, and he is too tired to engage in many activities. In fact, has trouble staying awake.

Interviewer: What is a typical day like for you?
Kenneth: Well, a typical day is like I just can’t get up and motivate myself. I mean, I wasn’t gonna come here again today. I didn’t come here yesterday. I just didn’t have no nerve really to come in yesterday. I was so tired. I took the medicine this morning and this made me groggy and tired; that’s why I’m kind of downward voice. When I take that morning medicine it knocks me down. It makes me so tired. I’m taking a lot of medications. I take eight or nine pills in the morning and eight or nine at night.

Kenneth feels guilty about his inability to accomplish anything. He wants to do things, but he isn’t able to overcome the effects of the medication.

Interviewer: How do you like coming down here?
Kenneth: I like it in a way, but I really feel like I should participate better or more than I do, because when I try to participate, I go to sleep because of my medication.

Kenneth says that he does not have a lot of good memories from his life, but remembers his grandparents fondly, and likes to think about the times he spent with them.

My best memory is being with my grandma and granddad Rupe and the Rupe family on Rupe picnics out at White Water State park. Every year we used to go, the whole family used to go to the park—White Water State Park.

Because Kenneth feels the effects of his medication so strongly, it took a major effort for him to participate in this interview. When asked why he wanted to be interviewed, especially because of the energy it required, Kenneth suggested that it was important to him to meet a challenge.

I think it’s done me good. I sometimes feel like, you know, people should try take on a task or take on a place with ourselves too.

Listen to T.J.’s message here:

T.J. is a 50 year-old white male who struggles with depression, in addition to schizophrenia, yet family relationships are his biggest focus. He was reared by a relative of his mother’s, and when as an adult he saw his mother shortly before she died, it was for the first time since he was 5 years-old. T.J. has a grown daughter who was given up for adoption, and she is also much on his mind, in spite of the fact that they have no contact.

I’m very concerned about my daughter. Yes, I’m very concerned about her. She might not want to see me. I can understand the uh passion that she might have with her adopted parents, ’cause I can recall when my parents were trying to pull me, my biological parents were trying to see me when I was a little kid, that I would push and fight.

T.J. lives alone, in an apartment he obtained through his own efforts. He is not currently employed, and he finds his day-to-day life a struggle. When asked to describe a typical day, T.J. responded:

When I can get up outta bed and be able to walk normal for once, I feel I’m moving a little forward. [I’m] feeling depressed all the time. I mean I’ve laid in bed for [so long]. Winter time is terrible for me. I just can’t move physically. You know…the weather outside like today, I kinda hurt today. I have pain in my neck, in my lower back and my legs all the way down, both of my legs all the way down.When I had my neck surgery on my neck, I had spinal cord compression.

In addition to his other problems, T.J. has struggled with alcoholism. There is a history of alcohol abuse in his biological family, and he believes that the propensity has been handed down to him. He knows that he will be unable to progress in his life while drinking, and at the time of the interview, he had been sober for some time.

They say, does alcohol run in the family? I-I think it does to a degree, but I – these people never raised me- my biological father, and [mother]. I’m very grateful that on my mother’s side of the family that I had people that cared about me, relatives that took care of me. (Sighs)

T.J. has had jobs in the past, but he is unable to find employment that pays enough to cover living expenses and his medicine. If he worked full-time, he would lose his medical benefits. This is a dilemma common to all those with schizophrenia.

I just felt…that I’m worth more than what they’re giving me. You know, if I’m going to get off disability and work…I think I’ll just feel better if I sometimes, if I can do something to work. But at the same time, I don’t want to lose my benefits just right away either. And keep a roof over my head or I’ll be right back to, you know, back to the shelters again. That’s something I just don’t want.

Listen to the above excerpt here:

Because being productive is important to T.J.’s sense of self-worth, he partially fills that need through volunteering.

I volunteer. I try to go up to Hope Center, and you know, tried to do things around there to…get the sign-out for groups and stuff. So I’ve just been going, trying to get everybody to participate…to get them in groups or something like that.

T.J. experiences much stress with his situation, but he has learned a way to cope and find calm and peace, by going to a quiet spot on the grounds of a nearby church.

I happened to walk by this little brick place and happened to see [a statue of] Virgin Mary up there, and I went and took shelter there. [Now] when things are going crazy around here…I just wanna just walk [to the spot by the church]. I can sit there for two/three hours sometimes, just to read a paper or just to do work, work on something you know.

In spite of his daily struggles, T.J. has found ways to manage his stress, and he remains interested in others, and motivated to contribute to the society in which he lives.

Listen to an expanded version of Rick’s message here:

​Rick is a 53 year old, single African-American man who was interviewed at a local community mental health center (CMHC) in Cincinnati, Ohio. At the time of his interview, he was newly in his own apartment and had been attending the CMHC for several years.

Lack of relationships with others, particularly family, is a strong theme in Rick’s story, and this started in childhood. When Rick was 10 years old, he was removed from his mother’s home and placed in foster care. Then, as an adult, he found out that his mother had died, so he wanted information about what happened to her. He was instructed to contact the Coroner’s office, and when he did that, he was told by the coroner that the woman he inquired about did not have a son. Having been told that the woman he thought was his mother was not his mother, he now questions most things about himself.

I’m just looking for some answer. I’m hurting. I’m hurting bad… I might seem all right on the outside, but, you know, on the in-… I am really tore up. I’m just so confused. I’m still wondering if that was my mother, if that was my… You know, I don’t even know who my family was. I don’t know, but I’m just going through all this. I don’t even know if that was my real name. I don’t even really know if that’s my age…

Rick is longing to know more about and have connection with his family. However, he has been unable to get information from any of the people he thought he was related to, as he is estranged from most of them. But he finds connection at the CMHC.

You know, a lot of people turn their back on me…. And that’s what isolated me from family, you know? So, it’s like that now… That’s why I’m here every day… They, they are part of my family here, you know. I mean, when my son passed away, they really showed me support, support ‘cause I didn’t know what to do. I was, I was devastated… I just didn’t know what to do.

Having weak social support networks is a common experience for individuals with schizophrenia. In addition to schizophrenia, Rick also struggles with heart problems, depression, GERD, high blood pressure, and asthma. Several years ago, Rick suffered a stroke that resulted in his spending three months in a rehabilitation hospital and taking several years to recover to the point he is now.

Rick: ‘Cause I was determined to get outta that bed. I mean, every time the nurse came and look for me, I wasn’t… I eased outta that room.
Interviewer: You were gone!
Rick: I was into that gym, do what they do with the weights and stuff, trying to get myself better… I was determined to get up outta that, you know, bed. I wasn’t gonna lay there… They was surprised how I, I improved and… ‘Cause this side of my face was way up here.
Interviewer: Yeah.
Rick: You know, and I wasn’t walking or… I went to lots of therapy. I went to physical. I went to the umm, the uh, the uh…
Interviewer: Speech.
Rick: For my speech, yeah. And I went to occupational. I was doing a lot of therapy all during the week. You know, even though when I got out the hospital. That was wearing me down. But, you know, here I am.

Rick attributes his success in being able to cope now that he is out of the hospital to the mental health day program he attends. Listen to him speak of the support he received here:

His speech and walking abilities have returned; however, he continues to struggle with bouts of confusion. Despite the confusion, Rick feels fortunate to have regained what he has and would like to provide encouragement to other stroke survivors:

I would like to give stroke people encouragement. Don’t give up… Just don’t give up and just be strong, and just hang in there.

Rick is very confused about a lot of things in his life and in pain over that confusion. However, his solution to helping himself deal with the pain is to help others who have had experiences similar to his. In addition to being raised in foster homes, he also spent a lot of time in group homes across Ohio and Kentucky, having had trouble with mental health issues since childhood. Thinking back on these experiences, Rick would also like to offer encouragement to young people currently in those circumstances:

Rick: I would say, “Look I was here, you know. This is where I was at before… Look, y’all can do it. I did it.” Even though I would share a little of my, little story with ‘em, you know?
Interviewer: Uh-huh.
Rick: And just say, “This is how I came back, y’all. You know if I can do it, ya’ll can do it.” … things like that, I would just share my little story and….
Interviewer: Try and give them the encouragement to keep going…
Rick: Yeah.
Interviewer: …and move forward.
Rick: Mm-hm. Yeah.
Interviewer: Sometimes that’s what people really need…
Rick: They do.
Interviewer: …when they’re going through a rough time.
Rick: Yeah. Quite sure some people out there went through the same thing I’m going through if not worser or lesser. But I can just share my story with ‘em, and I know they’ll be like, “Wow!”… I mean, that’s what I would love to do.

Toward the end of the interview, Rick was asked what it was like to tell his story, for we believe that the act of telling one’s story can be healing in and of itself. Rick’s response confirms this belief.

Interviewer: What was it like, what’s it been like talking to me, today?
Rick: This has been great. I mean, ‘cause I can get stuff off of my chest. If I wouldn’t have been talking to you, I’da just been walking around and them things just on my head, I mean. I couldn’t wait for this moment, really… I couldn’t wait… Talking, just talking, letting things out… ‘Cause I been just walking around in circles.

Listen to an expanded version of Antone’s message here:

​Antone is a 43 year old, divorced man who was interviewed at a homeless shelter in downtown Cincinnati but has since moved into independent housing. He has lived in several places throughout his life – Washington D. C., South Carolina, and Ohio.

Antone recalled a time playing with friends at age 7, taking turns riding a bicycle. When it was his turn, he didn’t pay attention to the traffic signal and rode out into traffic, where he was hit by a taxi cab. He hit his head badly during the accident, and several days later started hearing voices for the first time. He described having years of escalating difficulty related to the voices, particularly because he was afraid to tell anyone what he was experiencing:

So, I really didn’t know how to deal with it or what to say to anyone or how to address it. And I mean it was that way for a long time. As I got older, the voices got stronger, and I got into a lot of mischievous stuff and was having a lot of problems at school, and nobody didn’t seem to know what was going on with me because I didn’t tell them what was happening with me. ‘Cause I didn’t understand what was going on with me. It wasn’t until–maybe, I was, I think I was, like, twenty? Nineteen or twenty? Something like that. I had gotten into the military, and again no one knew what was going on with me mental health wise. And things kinda changed a little differently then because in the military they train you. They kinda strip away all your mindset that you normally, your conventional mindsets you would have coming up. And they put a different instinct in you. So now instead of the voices telling me to do mischievous stuff, it’s telling me to do more criminal stuff. Because, like I said, my mindset was a lot different as far as what they were training me. And they kinda train you not to have emotions. That’s primarily what the basis is of the training. So I’m getting into more serious stuff now, you know, involving firearms and getting into serious fights and stuff like that. But, again, everyone was just thinking, “Well he’s just out there. He might be something with the streets or what have you or whatever situation may be.” But, I didn’t know how to tell ‘em I was hearing voices and what the voices were saying and what the voices were making me do. So it evolved a little more. I got out of the military, and I seriously had an attitude problem then for a number of different reasons. I was into the drug and alcohol for a while, but the purpose I was doing that was to try and calm the voices.

After Antone got out of the military, he did seek treatment:

Antone: I finally went and spoke with a doctor about it after I got out, and he started me on a regimen of different medications. Now for a while they would work and then they would stop. I mean, as the story goes, that went on for a number of years, but I had kinda gotten away from the mischievous criminal stuff and it was much more like an anger issue. That’s what people would kind of view it as, like an anger issue. Like, “Well, he’s just got anger issues. He’s just, need anger management or something of that nature and he’ll be okay.” Took anger management four times. Didn’t help.
Interviewer: Do you think you had anger issues?
Antone: No, but that’s what everybody’s telling me, so naturally you would think, well maybe I do, you know? So, that’s why I went and took the class. I took the class four times. Didn’t change anything. I mean, I learned a lot of good stuff, but it didn’t change anything.

At age 27, while married with 2 children, Antone was arrested and sentenced to prison for 15 years for robbery – a crime he says he is innocent of. He spent several years angry about the false arrest, but his demeanor does not today have that anger, as he was able to shift his focus toward more positive endeavors during his incarceration:

I won’t say going to prison was a good thing. In a way it was, depending on how you look at it because I finally was able to address the issues of my schizophrenia. You know what I’m saying? Because now it’s more prevalent than it was before. So now I’m talking to people, and I guess they were asking the right questions to find out exactly what’s going on with me. But in the same sense, I was going through the thing with the incarceration, being innocent. Of course there’s an attitude because you’re mad for being somewhere for something you didn’t do. So that was one of the bigger issues, and it took me almost eight years to kinda, you know, to get past that or work my way through that, if you will. Then the latter part of my sentencing, I kinda worked on communication skills, you know, things that people would, normally wouldn’t focus on. Doing things spiritually, reading a lot. I kinda isolated myself because I didn’t really like what was going on in there, so I didn’t really mix and mingle with too many people ‘cause that causes problems too.

In 2012, while still in prison, Antone was diagnosed with cancer. He attributed his success in getting through that period of his life to a positive attitude, his faith, and his family:

Antone: I had a bout with cancer (phone rings – theme to the movie, The Godfather) back in 2012.
Interviewer: What kind of cancer?
Antone: And that was kind of unnerving. It was, it was in my reproductive system. And didn’t know it was happening. Couple indicators. My cholesterol went through the roof and all this stuff. And the doctors was like, “All this time you’ve been pretty healthy and what’s this deal with your cholesterol? What are you eating?” I eat a lot of vegetables and chicken and stuff like that, but I don’t eat junk. I don’t eat a lot of cheese and all that stuff that could raise your cholesterol because when I got into the fitness thing, I did my research first to find out what to eat, what not to eat, what benefits the body, what hurts the body and how much you should consume at whatever time. So they did a battery of tests. I mean, I was like a human pincushion for a while. And then they did a blood antigen test. Like, I guess it’s called a PSA or something like that, and that’s when they discovered it was cancer. And luckily, it was caught in, like, stage two. But, I mean, if I would have went on and not went and just got a basic check-up or whatever, knew that the cholesterol was the way it was, I would have never known. Then it could have advanced to a stage three or four, and I might not be sitting here now doing this interview. So, but at the time I was going through that, I had to call my mom and my family and my kids and all that and let ‘em know what’s going on. Looking back on it, I would think to myself I should have been scared. I should have been terrified out of my mind, but I wasn’t. And I don’t know why I wasn’t, but I just wasn’t. I continued with everything I was doing with my exercise, with my eating, with my studying of the spiritual stuff. And I continued on with that like nothing that–I kept a smile on my face every day and people were like, “Man, you–I heard you got cancer.” I’m like, “Yeah I do. Well, what about it?” “Man why, I mean, how could you be walking around here smiling, and how could you be this and how could–?” I said, “Listen, man, no one’s gonna live for an eternity. And if the Creator decides that this is the way that I’m supposed to leave, then I’m comfortable with that.” “Oh man it’d be, it’d be f’d up to die in prison.” And, well, it’d be f’d up to die wherever. I mean, that’s just how it is. You don’t determine where you die or how you die. You know, there’s no way you can do that. But, my main thing is–what I’m thinking and what I’m explaining to the guys–my main thing is, I have to present what I’ve been practicing all this time. Because if I don’t, I’m a hypocrite, saying that the Creator is all-loving and everything is for the purpose of Him and His will. Why would I run around here on that, ‘cause I’d be contradicting everything that I’ve been personifying all this time. I said, aside from that, I have to be this way for my kids and for my family because who knows what’s going through their minds out there. Whether I’m getting the proper medical care and the whole situation. And that was their main concern. “Are they sending you here? Are they doing this? Did you ask for that? Did you do this?” “I’m doing everything you ask. They’re moving slow.” “Well, give us the number.” And then they come with a barrage of calls and they go, “Oh my God! You know what, tell your family to stop calling.” Why would you not want my family to show that they’re concerned and their love for me? I don’t understand that. If you’re not doing what you’re supposed to do, then they’re supposed to make you do it because they’re paying your check! And they didn’t like it. I mean, but that’s just the way it was. I got the operation done, and–. You know, the doctor was trying to tell me, “Oh, we can try this and we can do–.” “Oh listen. Hold on. Hold on. Hold on. We not gonna try none of this. You gonna cut this cancer out of me, and that’s going to be the end of it. That’s what it is. I already decided that.” “Oh, you don’t know if that’s gonna be it.” “I’m telling you that’s gonna be it.” Because in my practices it says when you speak and you say something and you request it from the Creator, it’s granted. Doesn’t happen like that all the time, but 99.9999% of the time, that’s what happens. So, get the surgery. All that’s said and done. I have to go back for the follow-up stuff. The doctor’s like, “What do you think?” I said, “You’re not going to see anything. It’s all gone.” I have strong belief in God. I got faith in that, so what I said turned out to be real. And he’s like, “Oh, okay, well that’s good. We still gonna monitor you and make sure that nothing else comes up.” 2010 ‘til now–nothing. I mean, I still got to do the check-ups every now and then, but nothing so, God is good, you know.

Listen to a segment from the above excerpt here:

Antone was released from prison in November 2013. He left the city where he was incarcerated to go to Cincinnati, Ohio so he could get a fresh start; however, he had to start with nothing:

Antone: So, I got here. Naturally I’m homeless because I don’t have anybody here. I don’t have any family here. So, now this is a whole new aspect that I’ve never experienced. So, I really don’t know what to do or who to go to or what to ask for. But, I need everything ‘cause I don’t have anything. I landed at the catholic worker house. I think it’s St. Francis–St. Joseph Catholic Worker. I think that’s the name of it. And I was very surprised at how willing they were to help, you know, the kind of direction they were point me in mentally, consciously. I’ve always had a thing about work. I mean, I’ve been working since I was like nine years old, so there’s never a problem with me working. But my–I think my obstacle was in my mind was I have a felony. So, it’s gonna be even that much harder to get in, to get some work. And–
Interviewer: I hear that work is important to you.
Antone: Yeah. I mean it–that’s how you take care of yourself. I mean, I’m not one of these people that sponge off the government and all that stuff. I mean, it–I went through some things a while. Could have gotten this and could have gotten that. I’m like, “Nah, I’m just going tough it out and just try to find work or whatever I gotta do.” You know what I’m saying? But I’m not going to go that route because too many people do it and then they get used to it and then they relax and they get lazy, whatever the situation is, whatever go through they mind, but I don’t wanna be one of those people. But anyway for, like, the first forty-five days, it was dismal.

Although Antone did get help for his mental illness after getting released from prison, he now stresses the importance of being willing to trust people in order to get better:

Antone: Now, as far as the Schizophrenia, you know, dealing with it when I got out here. I was kinda surprised with that too because there’s a lot of help out here for people with that type of a disorder, but you have to kinda put yourself in a track to get the help. If you don’t ask for it, you’re not going get it. I mean, there’s some things you might have to do that you might not be comfortable with doing. But if you really want help, and you really wanna try, I mean—. You can’t cure it, I don’t think. I don’t–nobody has ever told me that you can, but in order to be able to manage it a lot better and be a lot more functional normally, you have to get help. You have to trust someone and tell them what’s going on in order to get that help. If you don’t, I mean, you can end up in prison or dead, or I don’t know what would be worse, but probably something worse than that. You know and that just kinda blew my mind. But I’m–I always think back to, like, if I would have known to let someone know at a earlier age, I might not have went through all the things I went through. I just wish–I mean, hopefully this will kinda give people a little more insight into things, and hopefully the younger adults that, you know, might listen to this or read it or whatever later, that could be going through something like what I went through, it would be an indicator for them to say, “Hey, maybe I really need to talk to somebody about what’s going on and what I’m hearing.” And that’s really why I’m doing what I’m doing right now is–.
Interviewer: You want folks to get help sooner.
Antone: Right. It’s not specifically for me. But it’s, I mean I’ve learned like–different things, different places I’ve been, you know. You don’t always wanna do things for yourself. You wanna do things for people that come behind you.

Antone has been through a great deal in his life – mental illness, prison, cancer, and homelessness. When asked what keeps him going, he responded:

Antone: My spirituality. I mean I have a strong belief in the Creator. My family pretty much keeps me grounded, ‘cause they supported me, I mean, especially through the incarceration. They’ve always supported me, but especially through the incarceration thing, when you really don’t expect people to really be there for you because, “Oh, he’s locked up. He’s okay. He’s getting fit. He has shelter.” But it wasn’t like that with my family. My kids, you know what I’m saying? And I just refuse to lay down. I mean, that’s just me.
Interviewer: Have you always been like that?
Antone: Pretty much. (laughs) Pretty much.

Antone chose to Participate in The Schizophrenia Oral History Project out of a desire to help those who come after him. Listen to him speak about this here:

Listen to an expanded version of Mr. Zimmerman’s message here:

Mr. Zimmerman is a divorced man in his late 40s who has struggled with periods of drug and alcohol dependency in addition to his mental illness. During the 1980s, prior to the development of his symptoms, Mr. Zimmerman served in the Navy. He is thrice divorced, with three children.

Mr. Zimmerman has lived in numerous places over the years, though usually alone. We spoke to Mr. Zimmerman first in 2011 and then again in 2012. Between these two interviews he lived in 3 different places, including spending 10 weeks homeless. During his time on the streets, he was unable to get more than a couple of hours of sleep, he lost weight and he experienced deterioration to his back, hips and neck.

Mr. Zimmerman chronically struggles with multiple health problems including diabetes, congestive heart failure, pulmonary obstructive lung disease, emphysema, peripheral artery disease, neuropathy of the legs, difficulty regulating his blood pressure, and high cholesterol. He has to take over a dozen medications daily for his various ailments. Mr. Zimmerman was our first interview for the project, and that interview occurred in the summer of 2011. Hot weather is particularly difficult for him, due to his health problems, resulting in isolation. He speaks about his limitations in this excerpt:

‘Cause I walk, you know, slow. If I walk fast, my heart beats and then I’m in trouble. I start having heart palpitations. …sometimes when I smoke, it causes me to have almost a heart attack, lightly. And then I call the ambulance, and they tell you, “Well, quit smokin’ cigarettes. That’s causin’ it.” So I’m down to about 12 cigarettes a day. I was smoking about 4 or 5 packs a day… I set here 24 hours a day. It’s like I’m cooped up in prison. I can’t go nowhere.

Listen to an expanded version of the above excerpt here:

It is not uncommon for our narrators to indicate that they have shared things with us that they have not shared with their providers because we have no agenda in our conversations with them – we are just there to document their life stories. Mr. Zimmerman articulates this point in a follow up interview:

Interviewer: …one question I, we wanted to ask you also was… what was it like to talk with us last time, to be interviewed by us?
Mr. Z: Comforting.
Interviewer: Oh yeah?
Mr. Z: Yeah.
Interviewer: Can you tell me a little bit more…
Mr. Z: That’s the first time I ever told anybody things like that…
Interviewer: Okay.
Mr. Z: My doctor, when I tell him things like that, he admits me to the hospital. He thinks I’m nuts when I’m not.
Interviewer: Okay.
Mr. Z: That’s why I try not to… say anything around the doctor. Say, how you doin’? I’m doin’ fine.
Interviewer: So you don’t really get into anything?
Mr. Z: No, no.

Although the mental health field is bursting with wonderful, dedicated and caring providers, it can be a challenge to deeply listen to individuals with severe mental illness due to the constraints of an overburdened health care system. Mr. Zimmerman’s words are a reminder of what is not said when we focus too much on crisis management and not enough on listening.

Listen to Fonda’s message here:

​Fonda is 45, and recently moved to northern Kentucky, from Pennsylvania. She lives with her husband and her youngest son. Her three boys are from previous marriages, and the oldest two live in Pennsylvania. She was adopted as an infant to a mother who became an abusive alcoholic and a father who was kind, but whom she describes as a “workaholic.”

Fonda considers her belief in God the central element of her life. It gives her life (and her illness) meaning, and it prompts her to want to use the lessons of her life to help others.

I’ve read the Bible from front to back. When my son, my youngest son, I was, he was born the 22nd of January and my New Year’s resolution that year was to pick the Bible up and read it through. And I finished it in a year. And it was the most awesome thing I’ve ever read in my whole life. It opened a lot of things for me. I believe that Jesus died on the cross, and that He did it for me and for all of us. I believe that He was there to not only take away our sins, but to heal us. Now that doesn’t mean – I know some people want to believe that God’s gonna heal them from every single thing, and I don’t believe that God has every intention to heal everybody from every single thing. I believe that God lets people go through certain things, because other people go through these things. And if something like this, where I can share my story to help other people that deal with the same thing, then that’s what I’m here to do.

Listen to an expanded version of the above excerpt here:

Fonda believes that the medication she takes is essential to her ability to manage her life with schizophrenia. She depends upon the medication and takes it regularly and as prescribed, but because of insurance issues, she has sometimes had trouble obtaining it.

I started [taking medication] when I was twenty-two, but I was on and off it, because of lack of health insurance. When I was in my thirties, I guess, I was in and out of the psych unit every year. One time it was six times in a year, and I almost went to a state hospital, by my request, because I knew I needed more help than what I was getting. I don’t abuse my meds… I take it as prescribed. Always have. In Pennsylvania you have Medicaid automatically. This state, you don’t have it. I don’t have it right now. I have to pay for my own meds, and I’m trying to figure out how to do some of that.

She is currently enrolled in beauty school, with the hope of graduating and obtaining work as a beautician. Because of the schizophrenia, and her frequent hospitalizations, her work history has been sporadic, yet she remains optimistic about changing that, and her recent work experience has reinforced that hope.

My goal…is to complete school, to do something I never thought I could do. Because I, I was always working…I’d work and quit and work and quit, just ‘cause I couldn’t handle it. And then I proved to myself. When we moved here, I found my job at Wal-Mart, here in Florence as a seasonal worker for two months. And I held the job. And I was only let go because I was seasonal.

In the meantime, she has developed a YouTube channel, where she posts videos that demonstrate nail art techniques.

I have a YouTube channel, and I’m a YouTube partner. I have four hundred and fifty-six thousand some views of my channel. I have forty, I believe forty-three videos, put out where I show people how to do nail art. I show them how to do designs and things like that. And I have one thousand, one hundred and sixty-six subscribers at this point. I have struggled with that [the YouTube channel] too. I do it for a while and then…I stop videotaping my nail art. I always come back. Yes, that is an interest for me. Doing the nail art is a big interest for me.

To see Fonda’s videos: http://www.youtube.com/user/kutekrazynails

To see Fonda’s website: http://kutekrazynails.blogspot.com/

Fonda feels very fortunate to have the support of her husband, and she has this advice for family and friends of those who struggle with a mental illness.

Stand by those people that are close to you that have that, that deal with mental illness. Don’t walk away from them, don’t get so frustrated, and tired of dealing with it, that you can’t…be there for them anymore.

And because of her own struggles, she has this advice for those who are living with schizophrenia.

Never give up. There is always time to learn, to grow, to find the right doctor, to find the right people to help you in your life. I know a lot of people go through suicidal thinking and have committed suicide, because they don’t know how to handle it, and there’s more help out there than they are giving, than they realize, and they’re not giving themselves that chance to find it. They’re giving up too easily. And that’s one of the things that I’ve had since I was a young kid and that’s hope. I don’t know where it came from other than God, but I have hope.

Listen to the above excerpt here:

Amber is 33-years old, and was born into what she called, “a bad, bad family,” in which alcohol and drug addiction were prevalent. Out of the four children in the family, Amber was the only one put up for adoption—something for which she is now grateful. Her adoptive mother has been her greatest ally.

My [adoptive] mother has managed to bring herself up from having nothing. When my dad died, he left $800,000 in debt behind for my mom. And my mom picked herself up, and she made her own business. She retired from that business, and she’s always been there for us kids no matter what, through anything. I mean we’ve had our ups and downs. But she’s just always been there for me…. She’s my support system. I talk to her every day. We, we discuss everything on an everyday basis just with each other. She’s my hero. Wow! I wish I could be half of the woman she is.

At the time of the interview, Amber was separated from her husband, and expected their divorce to be finalized within a short time. She had an apartment, with her cat, and felt that she was better off living by herself, where she felt safe. She believed that schizophrenia played a part in the break-up of her marriage, and that it makes living with someone else difficult.

When we got married, it was, it was good at first. It was a good marriage, and then I started, I started hearing things…, and I started getting so paranoid about him; and thinking that he was doing this, and thinking that he was doing that. You know, just paranoid feelings all away around, that I can’t say…ruined our marriage. I would say that we both had something to do with it. But the schizophrenia had a little bit of, you know, a little bit of [a] part of that. And I’ve noticed that since like, since we separated, I don’t even want to date anybody else, you know. I mean, we’re still married and everything. But even after we’re divorced I don’t even want to date anybody else. I just guess I want to be by myself. And so my cat is sort of the person I date. He’s just that close to me.

Even with medication, Amber hears voices every day, and often they say brutal and frightening things to her. Yet Amber manages to separate who she is from the voices and destructive thoughts, and she is determined to live a peaceful and productive life.

I’ve heard voices that tell me things like that I’m stupid, and I’m never going to make it, and I’d be better off if I was dead. They’re like, they echo, you know, and the echo sound…is what is annoying. My marriage was [an] abusive marriage, and he cut me down a lot. But that’s nothing compared to when you hear the voices themselves. You know, I, I’ve had voices to tell me to cut on myself, but I, I never have cut on myself. For growing up, I was in and out of the hospital. I didn’t go to the hospital since I was 24 though, because I, I don’t want to be one of those people there. You know, the people that walk around in circles, and they just look down at the floor, and they have nothing to look forward to. I don’t want to be one of the people that give up and give in to schizophrenia. Schizophrenia is a fight, and you have to fight it all the way. And I am 110% prepared to do that.

Listen to an expanded version of the above excerpt here:

Listen to how Amber motivates herself here:

Amber is a student in a small four-year college, and she is determined to meet her goal of becoming a health care provider.

Listen to Amber’s struggle with school here:

I want to be an RN, or a nurse practitioner. Because, it seems like everybody’s always helped me. For once, I want to turn around and help people. You know, just because when you help someone, they, they appreciate you better. I would… really rather help someone.

Listen to an expanded version of the above excerpt here:

In spite of her wider goals, Amber’s greatest wish is simply to live the kind of everyday life that most of us take for granted.

I just want to live a normal life. I want to be able to go outside by myself. I want to be able to have people look at me and not have that paranoid feeling. I want to be able to not hear voices for one day. Just be a normal person. And be able to go for a walk. I, I can’t even go for a walk by myself anymore. …on a day to day basis, I go from here to my car, from my car to school. And that’s it.

Listen to the above excerpt here:

David is a 25 year old, single man who was interviewed in Cincinnati; however, he grew up in Wisconsin, where his parents still live. David was an athlete in high school, playing baseball and running cross country. He did well at those sports and also did well enough in school to get his high school degree. Then, he went on to college in Wisconsin. He wanted to participate in sports there, but had some difficulties:

I wanted to go out for cross country. I was thinking about going out for baseball. It was very rough for me, very hard to let go of that sports time because that’s all I knew. And I know that that caused some depression.

It is not uncommon for mental illness to limit a person’s ability to engage in previously enjoyable activities. David has been diagnosed with both Obsessive-Compulsive Disorder as well as Schizoaffective Disorder. (Schizoaffective Disorder is a combination of Schizophrenia and a major mood disorder – either Major Depression or Bipolar Disorder.) This is not easy for him, and he is not happy with the degree to which he is currently medicated:

It makes me feel very depressed about myself and not understanding why I have to take as many pills as I do each day. It’s very difficult to look at the pills and manage the pills and know that at some point I didn’t have to take that medicine.

Although David is taking several medications now, he is pleased to report being sober from illegal drugs for several months. During his two years in college, he experimented with drugs and alcohol, causing him to be unable to continue with his coursework. Once sober, his parents encouraged him to come to Cincinnati to engage in Cognitive Enhancement Therapy (CET). Even though this is helping him, he continues to struggle with compulsions, as described here in a typical day:

A typical day for me is, right now is kinda scrambling to put all the thoughts together to make things right. I am very disorganized and I, through the disorganization, I look for any way to make myself feel better, and many ways that is through compulsions. I have been washing my dishes. I usually smoke a pack of cigarettes a day. I’ve smoked two packs of cigarettes in a day. I go to AA meetings–try to. I play Call of Duty. I read my AA books sometimes, and I just try to sort out my apartment to my best ability to have everything perfect.

Despite these struggles, David is active in trying to maintain sobriety as well as stay on a good path with respect to his treatment regimen. He does not have many friends at present, but does want to connect with others. Consistent with one of the goals of this project, David believes in the value of connecting with others by truly listening to them:

I do believe that…if people would sit down and take the time to listen to somebody, they could fully understand them. And that person is more willing if they know that you understand them and I understand you, they are more willing to put forth more of an effort towards whatever you are trying to achieve.

Listen here to a sound excerpt that includes both “His message” from the top of the page and this commentary:

In the future, David hopes that he will be able to build upon maintaining stable day-to-day functioning in order to achieve broader goals. Listen to David speak about his hopes and dreams here:

John is a 28 year old, single man who lives in an apartment by himself and works part-time for his father. He has moved around a lot, from Ohio to Louisiana to Florida and then back to Ohio again. His love is extreme sports, and he is in the process of building a social networking website for others who are also interested in extreme sports.

John started to hear voices, a hallmark symptom of schizophrenia, in high school. The experience of hearing voices can vary from hearing a single voice to hearing many voices. For some people, the voices are jumbled, while others can make out specific messages. But, when someone can understand what the voices are saying, the messages are typically negative. Here, John describes an example of such painful experiences:

…and I’m in class and I’m hearing voices so bad that I had to put my head down and I started crying because…I was just…it was just an onslaught of these voices telling me all these things like “You’re a loser, you’ll never amount in anything, you’re gay, you’re…just like a total bum…nothing you, you dream of will ever come true.”

People with severe mental illness are at increased risk for losing touch with their personal, human identities. Growing up, John played hockey, football, baseball and even participated in martial arts. As an adult, he continued to be very physically active until schizophrenia set in, when his life changed significantly. John’s identity is that of someone who engages in regular physical and recreational activity (working out with weights, jogging) and extreme sports (snowboarding, mountain biking, mixed martial arts), but his struggles with schizophrenia have been preventing him from being this person. He has gained 50 pounds in the past several years. (Weight gain is a common side effect of medication for schizophrenia.) He is also currently struggling to get his body on a regular sleep schedule; his days and nights are flipped. These difficulties are causing problems being even moderately active, much less allowing him to engage in intensive physical activity. As a result, he’s felt estranged from that primary identity. His hopes are to return to being that person and to create a life full of meaning and contribution. In John’s words, “I wanna, I wanna figure out a way to do what I want ‘cause I want it so bad and I’ve wanted it for so long.”

Although John is one of our younger narrators, he is very thoughtful about what determines if someone is crazy or not. Several years ago, he described working with a man in New Orleans who, according to this man’s report, was a fugitive for murder. John himself did observe the man whipping his dog with a bundled up extension cord when the dog misbehaved. It is this violent behavior – not the presence of mental illness – that, to John, is the essence of “crazy.”

The guy that owned the car shop, that works with the landlord, um, his wife was pullin’ out of the driveway and um…uh, the dude was standing there with his dog – that pit bull I was telling you about. And…she was tryin’ to back up, but he’s not movin’ and he’s kinda like in the drive, and he’s tryin’ to back up and then he says to her “If you hit my dog, I’ma shoot you.” And she’s like “What?” You know, like, and so she keeps tryin’ to back up, and then he, he lifts up his shirt, and he has a gun tucked in under there. So, they called the police and that was the last we ever heard of that guy. …he just, you know, we didn’t know what was going on. It was just, like… That was kinda like…my first experience of how… crazy the world is… I just found out, you know, that the world is like, really crazy. You know, there’s some crazy stuff out there. And…but I’m not, I’m not the worst off, you know… even though I had problems. …it you know, depends on the, you know, if you’re a good person or not and some people just aren’t.

Listen to the above excerpt here:

Peter is a 57 year old, single man who lives in the home where he grew up; he’s been living there independently since 1996. He is the third oldest of seven children. Peter is also a craftsman who enjoys woodworking, upholstery, furniture restoration and copper sculpture (see above photo).

Peter reports that symptoms of schizophrenia began in his senior year in high school. Nonetheless, he was stable enough to go to Nigeria, where he taught biology. Although he had a three year contract, he only stayed 14 months. At the time (late 1970s), there was unrest in the country over the building of a highway through the West African forest. This unrest became stressful, causing Peter to struggle with what he should do:

So for me, this is all very, very, very hard on my head. You know, to make decisions. What’s ethically right in this situation? You know, do I stand and be a teacher and teach all this biology and let these things go on? You know, or do I, do I take a side? I had to take a side, but after Dahomi fell and they got a new principal for the school, I told the principal that I had to come home.

Listen to the above excerpt here:

So, in 1979, Peter left Africa and returned to the United States.

Peter has a background in Chemistry. Although he had some bouts with both physical and mental illness in his 20s, he graduated with honors in Environmental Control Protection Technology from Raymond Walters College. After graduating, he worked for an environmental consulting agency for 20 months before the stress was again too much for him, and he chose to leave. Peter’s sensitivity to stress is a common difficulty reported by individuals with schizophrenia, a struggle that others often misunderstand and minimize.

Throughout his life, Peter has tried several different medications for Schizophrenia: Prolixin, Tegretol, Tofranil, Cogentin, Risperdal, Depakote, Zyprexa and even experimental drugs tested at a local hospital. He is now back on Prolixin and Cogentin and pleased with this combination; however, he is critical of Western medical practices:

Western medicine does not heal. It seeks to cure, but it does not heal. It seeks to find the reason, but they’re too bent on physiology, form and function – too bent on nuts and bolts to think about the spiritual healing of a person… If you have holistic doctors who depend on holism–holism is pretty much like the cosmos, everything connected together in the ecosphere. With holism, they try to use the body homeopathically, you know, to help the body to heal itself. …even the holistic doctor is not in tune like Eastern religion is with the cosmos, a cosmos where everything in the niche zens to the healing. The environment is also included in a person’s healing. I surround myself with things that make me feel good. They all, they all, they have a part in my life, you know, and I heal here, but I can’t go very far from home.

Listen to an expanded version of the above excerpt here:

Peter has a sophisticated understanding of the need to incorporate multiple components of a person’s life into treatment regimens. As such, he is active in creating healing environments for himself and encourages others to be more active in healing themselves:

They’re just giving you the medicine to cope with it. You’re gonna have to heal yourselves. You’re gonna have to work with each other to heal, heal yourselves…We have these problems all the time. We’re heartbroken all the time. We’re gonna have to do something about it. And, you have to help somebody else about it…

Peter doesn’t just talk about the need to help each other to heal, he acts on those beliefs. He volunteers 60 hours a month on the WARMline, a call-in service for mental health consumers who need support but are not in crisis, and has done this for the past 17 years.

At the time of our interview, Derrick was in his early 40’s, and his life story provides another example of resilience despite multiple challenges. During his early years, he and his two sisters were physically abused by his drug and alcohol abusing mother and her boyfriends. He described being beaten with an extension cord as well as forced to put peanut butter on his fingers and place them into mouse holes so they could be bitten by mice. And, the final act that occurred before he was removed from the home was his mother coming after the children, and injuring his sister, with a butcher knife. (Listen to Derrick describe the abuse here.)

Once safe, Derrick was raised in foster homes, where he described being treated well. He graduated high school and even took some college courses before schizophrenia kicked in. He later got married and had several children; however, there were problems in the marriage, resulting in divorce. This was a difficult time for Derrick, when he himself turned to alcohol for comfort. He described his struggle in this transcribed excerpt: (Listen to it here.)

Derrick: So once, once, I went through the divorce… It seems like I psychologically wasn’t right with the divorce, so I became homeless. So, I lived in the streets for, like, 3 years, sleepin’ under bridges, sleepin’ in abandoned buildings, hallways, um, outside on park benches, sleepin’ in front of the court house. So, I did that for, like, 2 and a half years and then somebody told me about the Drop Inn Center. So I went to the Drop Inn Center. I lived in the Drop Inn Center for 6 months. Actually, after that I was able to bathe. I mean, for them two and a half years I had… I couldn’t bathe, I wasn’t eatin’ properly, uh… I couldn’t brush my teeth, I couldn’t… And it was like I could’ve had anything from bein’ outside that long. You know, no clean change of clothes, socks or nothin. So, once I got in the Drop Inn Center, I lived in there for 6 months and then… Um, I would get up in the morning, leave the Drop Inn, go to the Shower House. The Shower House, they would give you a clean change of clothes, let you shave and shower, and then you have to stay outside all day, but, I would say to myself, “I couldn’t… There’s no way I can really find a job because I wasn’t able to have nowhere to really live.” This is before I moved in the Drop Inn. So, I lived there for the 6 months. Then they sent me to MHAP, so I went to the interview with MHAP and they said, “You know what, Derrick?” They say, “We found you somewheres to permanent housing” and I was like, “Yaaay!” (claps) So after that, they introduced me to Tender Mercies. I moved to here in 1998. And, I moved in, and Sister Kathleen, she was a nun that works there. She’s there forever, since they first opened. Um, she got me my social security, my disability, and, um, you know, right now, I’m able to keep up on my child support, pay my rent here, have a little pocket change, um, I’m able to eat four course meals throughout the day, keep my body clean, clean change of clothes, uh, have somewhere to lay my head at night. Um, not, not sayin’ almost livin’ normal, but havin’ the basic normal necessities that I get, a regular person or persons going through mental health stages need. So, um…
Interviewer: That anybody would need…
Derrick: …yes, so, um… I’ve been here… January, the 6th will be 13 years. Um, the first three years I moved in here, they chose me to be a Board member. And, I was on the Board here. And, my job on the Board was I represented… We have 6 buildings. I represented all the other residents. If they would have a problem, they would come to me, and then we would meet… The Board members would meet on Tuesday. They had principal, federal judges, bank owners, you name it. These people were all on the Board at Tender Mercies.
Interviewer: Mm hmm.
Derrick: So, they, they say like, “Well, we want locks on the bathroom door.” So, I would go to the meeting. They say, “Well, Derrick, um, what do some of the other residents, something’ that they…” I would take my notes with me, and I’ma help make a lot of changes to make it better, not only for myself but for us other residents that live here.

Although he was more stable at the time of his interview, he was yet unable to function completely independently. One might think he would be bitter about his fate, and about life, but in spite of the severe abuse Derrick suffered, several bouts with alcoholism, years of living on the street and a chronic mental illness, he remained optimistic, attributing his outlook to his faith in God and “Being around positive people”. When asked to discuss his “best memory,” Derrick replied:

“Getting a second chance because… I was so close to death. I was so close to death more than one time. More than one time.”

Sadly, Derrick did pass away a little over a year after this interview. Those who knew him mourned his passing, as he was known as a kind and compassionate person, warmly accepting all those he met.

Listen to Derrick’s closing comments here.

Annette is a woman of 50 years with schizo-affective disorder. Most of her life has been troubled, beginning with sexual abuse from her father, when she was less than 8-years- old, and continuing into her teen years, which she spent on the streets abusing drugs and alcohol. The addictions followed throughout her adult life, but at the time of our interview Annette had been drug free for two-years, and had been taking her medication regularly.

But I learned to take my medicine. I got there in and out of mental institutions most of my life. I’m finally 50 years old, starting to take my medications. I get very depressed a lot, but my case manager is trying to help me. I go to stress classes three times a week to try to help me, but I still have flashbacks. And it, you know, I learned, you know, that it wasn’t my fault what happened back then. I used to think it was my fault, but I know now that it wasn’t … Yeah. I’m working very hard on improving my life with stress classes, taking my medications …

Listen to an expanded version of the above excerpt here:

Annette attributes much of her current progress to her stress classes. Listen to her talk about why she likes them here:

In addition to her stress classes, Annette has found a church where people are supportive, and where she can put her love of singing and her talent to use.

I have confidence in my minister who’s really supportive of me. I don’t have many friends. I really stay home when I’m not in stress classes, watching TV or go to church. I sing in the choir. I love that. I really like, I always wanted to sing for the Lord. Yeah that’s, that’s the best thing that really came to my life, is my singing. I love singing. Yeah, I walk around the house singing *laughs* church songs. And I tell God every morning, “Thank you for waking me up this morning.”

In addition to struggling with schizophrenia and depression, Annette has other health problems that keep her close to home. She doesn’t have hobbies, and she has more spare time than she would like. As her life becomes increasingly stable, she would like to be able to volunteer. Annette expresses a desire that is common in the stories of our narrators: the need to give-back, through contributing to the lives of others.

I’d probably do some volunteer work in a nursing home. Because when I was in there I took care of other people. Yeah, I like reading to them, stuff like that … I learn a lot from them, talk to them, read the Bible and stuff to them, you know? I just like doing stuff like that … It makes me feel good inside … I have old friends, so I might clean up for them, or go to store for them. I have an old friend, she about 90 something, in church, we talk every day. She my best friend, she is a friend. She an old lady.

Listen to an expanded version of the above excerpt here:

Annette is making continued strides in creating a life where she can be more comfortable and productive, yet she continues to struggle—as much with the difficult experiences in her past, as with her mental illness.

Yes, I’m happy with my life. I’m happy with my life, and I’m sad with my life, because my past keep flashing back. As I get older, it still is coming back to me, and I don’t know how to deal with it. But I have to. That’s why I go to them classes, to try to deal with my life.

Listen to Nicholas’ message here:

At the time of our interview, Nicholas was 28-years old. He was the oldest of four children from academically successful parents—an elementary school teacher and a college professor. Nicholas had been a high-achieving student throughout his elementary and high school years, and his academic success was a defining aspect of his identity.

I graduated from high school with a 4.5 GPA and like eighth in my class. I was one of the people that helped push the boundaries of what like is possible in terms [of success in school]. Like… you have to keep up with me in English class. I might have to keep up with [name of classmate] in math class, but you’ve got to keep up with me in English class.

After high school, Nicholas was accepted into the DAAP program at U.C., where he completed his freshman year in college. There, he found that he had to work much harder to succeed.

And for the first time in my life, I experienced stress. Not “Aww, am I going to pass this test?” stress, but like, “Am I going to fail at life?” stress. Because design school is difficult. Like I went from like, you know, 10 hour work weeks in high-school to like 25, 30, 40, 50, 60 hour work weeks in design school.

In spite of the stress, Nicholas completed his freshman year. Instead of returning to DAAP the following year, however, he chose to enroll in an International Study program in London, and there he engaged in a very different life style from anything he had experienced previously. Recent research indicates that drug use can be the precipitating event for individuals vulnerable to schizophrenia, and that was the case for Nicholas.

…going to England for, you know, I wanted an adventure. Like, I wanna go see something, “This world is round, it’s large, like, let’s go somewhere where I’ve never been before, and do something I’ve never done before.” So I go to England, and immediately, I start meeting like amazing people, and my focus just completely changes from like academics to social life. Well, my 20th birthday, I start smoking pot for the first time. I do Ecstasy for the first time, and I scare everybody. Because…I start going to the Deans of the University and I start telling that we need to have a world peace conference…like something terrible is gonna happen.

Listen to an excerpt in which Nicholas talks about both college and traveling in Europe here:

Nicholas was then hospitalized, and after returning to the United States was in and out of hospitals (as many as 8 or 10 times) over the next 10 years. In spite of those very severe challenges, he graduated from college in 2010, having changed his major to English. Presently, Nicholas continues to struggle. He has been on medication since his first hospitalization, yet he continues to hear voices, and has been unable to separate his clearer thinking from what the voices tell him. His high motivation for success continues to manifest in his desire to have a positive influence on the world through his writing. He has started a number of writing projects, including a franchise manual for a friend who is opening a vegan business, but schizophrenia hinders his ability to see these projects through to a successful completion. Yet Nicholas continues to set goals, and he continues to exert pressure on himself to succeed.

I have 8 more months to just sit and write. And then I have to start either looking for work or being successful at this venture.

Listen to Jazmine’s message here:

Jazmine Floyd is in her early 20’s, and still struggling to make sense of her life and her illness. Most recently, she lived in Indiana with her family, but she grew up in Atlanta, GA. She felt that she needed to get away from Indiana to see if she could manage better on her own, and she took a bus to Cincinnati, where she knew no one—leaving only a message to say good-bye. At the time of our interview, she had been in Cincinnati for 8 months, and living in her present apartment for three months. She was back in touch with her family, and she was feeling optimistic about her choice to begin in a new place.

I just want a new start. I wanted to go, I wanted to get my G.E.D. like…I’m going to a literacy program down the street, [to] get my G.E.D., and the teacher say you really, you work really hard. Yeah, I mean I have to work hard, because I really want to get it. Everyone’s telling me oh, you know you’re not gonna get it right away, and when they kept on saying negative things, I believed it. When people say something negative, I’m like oh I guess I can’t do it, you know. But when I do it on my own, my own time, and just take my time and do it, I can do it. When I took that G.E.D. practice pre-test, I passed every subject. But, before when I stayed in Indiana, I couldn’t pass none of it.

Listen here to what Jazmine likes to do for fun:

Jazmine also likes to write in her spare time, and she is working on a book to try to tell others what the struggle with schizophrenia has been for her.

In the front page, in the front of my book’s going to be a picture of me. It’s going to say, “Do I look normal?” and people would think, oh yeah, she’s normal, you know, automatically, from [the] outside they think I’m normal, but inside it’s a lot going on, you know. And I want everybody to know that just ‘cause someone’s, you know, gorgeous on the outside doesn’t mean they’re right on the inside. I love to write. Poetry especially. The most basic thing I like right now. I like to draw too, but it’s mostly painting.

Listen to an expanded version of the above excerpt here:

Through her teen-age years, Jazmine felt anger towards her family and others, and as she mentions below, toward herself and her situation.

I feel like well, you know, I’m angry. I have so much hate towards everybody. And it’s not actually even towards everybody, it’s really toward myself sometimes. I wish I were not like that as a person. I didn’t know how to handle that…I felt rejected. You know they see oh, on your resume, I put I have a disability. “Oh, well, we can’t hire you.” And, and, friends, they judge before they know. I’m really a good person. I’m just, you know, sometimes quick to react.

As with many persons who are adjusting to schizophrenia, Jazmine has (in the past) resisted the idea that she needs medication. Recently, however, she is coming to believe that mediation does help.

Medication. I’m off that now. I’m off my Haldol. When I was in Indiana, I had Haldol shots. It helped put that brain imbalance correct, you know. I felt when I stopped seeing the things I was seeing I was like..[better]. And they stopped that [the medication.] And now I need it. I realize, I think that it was helping me more than hurting me.

Still, even without the medication, Jazmine’s answer to what she likes best about her life suggests both how debilitating schizophrenia can be, and that she is grateful for the little things. It also indicates that she is learning the importance of persisting.

But the fact that I can get up, cook myself some food, and wash my body every day, and go to school. That’s like the best thing. I never could do that. When I was back in Atlanta or Indiana I quit. I always gave up.

Listen to Shaggy’s message here

Shaggy is a young man in his late 20’s who has been struggling with schizophrenia since he was 18-years old. As is often the case, he went through an unstable period after his diagnosis, going off and on medication, and experiencing difficulty with day-to-day functioning. Now, he has gained greater stability in his life. Here Shaggy describes his current residence, where he has been living for 10 years.

It’s a family-care home for mentally ill people like me, and there’s me and three other guys up there. I got my own room and I basically like living there. I feel protected there and stuff like that.

Shaggy has an interest in space exploration and enjoys books about astronauts and space.

I actually [would like to have] been like an astronaut and actually go to space, and see how the Earth would look from the outside. I got books and everything. I learned a lot from other sources about the universe and all that. I studied it at school, too. I like science and I’m good with math too, I’m real good with math. You know how when people talk about aliens, and people think they’re crazy? This planet has life on it, right? And we have our solar system, and science knows there’s trillions of other solar systems out there with planets going around… it would not make sense for this to be the only planet with life on it. So I do believe there could be life out there.

It is important to Shaggy to keep busy, and he does what he can to earn money.

I like cuttin’ grass or helping people clean and…a friend of mine’s landlord is giving me some work. He’s gonna pay me to help clean out an apartment after these people move out of it. Or, I’ll cut grass or I’ll help do things…

I got one friend that pays me to clean his basement for him. He pays me pretty fair, too. I only work an hour or two and make 20 bucks. Sometimes I make 25, it depends on if he’s got it, or I’ll cut the neighbors grass, he’ll pay me 20 bucks. [It] makes me feel better, a lot better.

For anyone with schizophrenia, gaining and keeping medical insurance is a driving force in life, and Shaggy is no exception. Historically in the U.S., individuals have been unable to get long-term coverage to treat schizophrenia through private medical insurance, a fact that controls how much they can work, and how much they can earn.

I can’t work full time because of my disability. I’d like to get a part-time job one of these days, doing part time work that wouldn’t interfere with my check. And I could put some extra money in my pocket. Because I gotta keep my SSI to keep my medical insurance…for my medication and all that. And if I interfere with that…if they do cut me off, I’ll end up having to pay like 400 or 500 bucks for my medication every month.

In spite of his youth and his challenges, Shaggy is clear and thoughtful about the things he believes are important in life.

Try to make your life better and help other people out. Help other people that need help. Try to stay a good, honest, decent person. That’s what I think we should all be like…

Like, my friend…awhile back she just got out of the hospital cause she fell down, she busted her face really badly and her wrist was broken and all that. But I try to help her whenever she needs help, I’ll take her trash out, run the vacuum; I’ll do her laundry for her if the nurse ain’t doing it. Be an influence to other people…even people that do it wrong. It might change their mind. It might change their ways towards you. They might sit there and think one day, “Well, maybe…he’s nice and respectful towards everybody, and he ain’t gonna have nobody going against him, and if I keep acting the way I do I’m going to turn a lot of people against me.” Some people may open their eyes and see that, and maybe they might change their ways.

Listen here to what Shaggy most wants people to know about him and more about what he thinks is important in life:

Shirley is in her 40’s and was first hospitalized with schizophrenia in her late teens. She is the youngest of 11 children, and there is a strong history of mental illness in her family. She was sexually abused by her father, beginning when she was only 2-months old, and later by her older brothers, as well. The abuse continued until she was 16-years old, and in all that time she had no one to protect her. Although Shirley reported the abuse to her mother, she did nothing to intervene​. Shirley felt an absence of love and security that continues to be a source of regret.

Shirley: I always wanted a mother, a mother love … I always wanted a mother that I can go to and lean on her shoulders and tell her anything about me, ask her any kind of questions that I need to know. When I go to my mother, it’s like she think everything that I say to her is a joke. She laughs about stuff, and I guess I’m not really accepting that because she’s the only mother I have and I don’t have another mother to talk to. But to find comfort, I did find comfort in going to my church home, finding a god-mother which is 80 years old that I can talk to and she will listen to me.

Shirley experiences considerable anxiety about leaving the house, yet she has the strong desire to work and contribute to the world around her.

Shirley: Sometimes I find myself being paranoid around people. I find myself paranoid getting on the buses and stuff like that and crowds of people… I’m thinking people [are] looking at me the wrong way or, somebody’s watching me or something. I’m still struggling trying to get a G.E.D. I want it; I always wanted it … I don’t have a G.E.D. or a high school diploma, and I’m still trying to get that. I believe that everything and anything is possible. Pathways is helping me right now with trying to find me a job. They know and see that I’m ready for work … that’s gonna be a big step in my life to make me feel better, to make me feel like I am somebody.
Interviewer: Why is working important to you?
Shirley: Working is important to me because I believe that if it’s anything in life that you want or need, you [are] supposed to work for it. You [are] not supposed to ask nobody or borrow from people … because if you have the ability to work for it, and there’s nothing wrong, then you should be able to work for it. But some people, I guess, don’t work because maybe they don’t have legs or arms and stuff like that maybe. But I feel like I wanna be motivated. I wanna get going. I got a strong desire [to] get going. I don’t really have a lot of work experience in my life, but I’m willing to do whatever and I believe that I can do whatever job that’s offered to me.

Shirley loves dogs, and she lives with her little Yorkshire terrier, Fluffy, who has helped her deal with her anxiety about leaving home and makes her feel more confident out in the world.

Shirley: I have me a dog. It’s a little Yorkie and … I got her as a therapy dog, and she helps to keep me company. She makes me laugh. She helps me to get out the house and moving. Because before I got her, I wouldn’t go out [of] the house. So now, since I have her, I enjoy walking with her, taking her walks to the park. She makes me laugh a lot because … I mean that’s the only thing that makes me really laugh a lot is dogs…. If I have a bad day, I can be going down the street and see a dog, and the dog … I just look at him and he’ll make me smile. And that might be the first smile that I’ve smiled all day (laughs).

Shirley’s strong desire to help others comes through clearly in her message.

Listen to an expanded version of the above excerpt as well as Shirley’s message here.

Paul, 47, has lived by himself for 14 years with his cat, bird, and fish. He has additional health problems and lives on social security disability. He enjoys drawing, and he is an accomplished organic gardener.

Here Paul describes a typical day:

“I keep a journal where it says: I’ll wake up in the morning … [and have] coffee and cigarette, my normal addictive behavior of coffee and cigarettes. I keep a journal where it says: Function, Effect, Effort, Direction, Conduct, Behavior, Actions. I’ll feed the animals. I’ll water the garden. That’s my surrogate family: my fish, my bird, my cat, my garden…. Read the newspaper, listen to the news, listen to talk shows. I listen to two talk shows. They’re a radio station that’s predominately white conservative, and the other one is predominately African-American liberal. I listen to both. I’ve called both. I listen to both daily.”

Paul lives with mental confusion and chaos everyday, yet he has found unique, insightful ways to cope and manage. He may have trouble keeping track of time by the clock, yet he has devised this system:

“If you notice the prism, and the mirror prism … in the sunshine. I will put the prism in the east-faced window, and by the time of the day when the spectrum hits a certain size, I will do my housework, as spectrum hits a certain size, I’ll take my medicine.”

Paul lives in poverty and has schizo-affective disorder. Far from being someone who should be feared, Paul has had a positive influence on his neighbors with his gardening. Many neighbors have begun planting gardens of their own. Paul also developed a thoughtful moral and ethical system by which he lives, and it includes giving to others while protecting himself from exploitation:

“If I have something and I willfully withhold it, just because of greed or spite, that’s on me. That’s wrong. So if I have it to give, I’ll give it. … discerning, that if you give somebody …. to discern, to discriminately learn. I discern, … get this in my memory banks that this, this usually leads to that. If somebody is excessively, sociopathically, excessive, exploit, takes just for taking, that, that I stop. That I don’t do.”

Listen to Paul discussing the above mentioned points as well as how he copes with his symptoms here.

In spite of Paul’s good citizenship, he is aware of and bothered by what some others think of him and his situation:

“You have to overcome the beatings, the, the prejudice, the put-down. “You’re, you’re worthless, you’re, you’re on entitlements.” You know, “I work so many hours a day. I’ve worked, so … why … where do you just sit there and call the radio stations up, give your opinion” … second-class citizen stigma. A stigma of being second-class citizen. Hell, a lot of it’s true.”

Paul is managing his life amazingly well given his challenges. He manages his own needs, takes excellent care of his pets, and makes a positive contribution to his neighborhood. Yet, sadly, the last part of the above quote, “Hell, a lot of it’s true.” indicates his guilt and concern over his inability to hold down a job, something that he can’t possibly do. In his message, he asks the all-important question: “What would you do, how would you cope, if you were in the same situation?”

Listen to Bob’s message here:

Bob, at 47, has been living with schizophrenia for 30 years. He shares an apartment with a roommate, and he fills much of his time reading, especially in political history, yet time hangs heavy for him, and he has many regrets about his life, including the absence of friendship.​​​

In our world, in this world of schizophrenia, it’s hard to find friends. I mean, people always think, you’re different—that you don’t have enough money to go out and do the things that friends normally do, go to a ball-game.

Most of all, though, Bob regrets the life he believes schizophrenia has taken from him.

I’m 47 years old. If my schizophrenia hadn’t interrupted my dating years, then I would have started a job and established a family, and I would have probably had two or three kids by now. I would have been living in a nice house someplace.

It’s scary because you I think, ‘Oh, all the stuff I’ve missed’, you know? And, again, it’s been just a colossal waste. It’s terrible what it robs you of. People-you wonder why we’re never happy or some people are never happy even when they get the medicine. It’s because there’s always this reality that hits you. You’re never gonna quite be the same anymore. And there’s always gonna be a deficit somewhere. You’re not as good or you’re not as fast or you’re not as smart anymore and it just, it’s hard to live with. It really is.

Listen to an expanded version of the above excerpt here:

It’s Bob’s faith that gets him through the discouragement.

It just gives me peace. I know that no matter how terrible this life is, I have a faith in something greater than myself, someone greater than myself, that when I do die, it would have made all the suffering in this life worthwhile. I don’t believe people suffer for no reason. I believe there’s a reason for it. I still feel the pain of being a schizophrenic, but my faith is in Jesus and I just believe He will have a better place for me when this life is over. That’s why I can tolerate it.

Listen to the above excerpt here:

Also with time, Bob has learned that keeping the appointments with his case manager and staying on his medication has helped him cope. This is different from the early years of his illness, when he was reluctant to believe he had a mental illness and resisted treatment.

[Now] in 19 years I’ve missed two [medication shots] and I made both those shots up, after missing them. Case manager appointments—I don’t think I’ve missed one. It wasn’t an immediate transformation. My parents first started noticing I seemed a bit more social. I wasn’t hiding in the shell anymore, just cowering in myself, staying in bed days on end without coming out of my bedroom. I was socializing with people & getting back into life, basically. Not big things, it was little things, like getting a haircut or taking a bath on a regular occasion, brushing your teeth, just basic things.

Although Bob appreciates the services he receives, and he knows that he is able to function better because of them, he believes that changes in the mental health system need to be made.

What I’d like to see done is stop having a revolving door with case managers. I’ve had 35 of them in 20 years. That’s almost 1 every 6 months. Not that I’m not getting the proper services, but when a case manager leaves, you’re struggling to get with the new one, because he’s so overloaded with his case-work, getting a simple thing like an appointment with your doctor so you can get your medicine on time—that’s a problem. ​

Most of all, Bob misses the chance for accomplishments.

Bob: We wish we had something more creative to do then just spend our time going to the welfare office just getting enough food stamps or rent assistance or prescription drug assistance.
Interviewer: So you’d like to have something more productive to do?
Bob: Exactly! Something…you know?