Katie’s Message: “I’m not lazy. I’m not a deadbeat. I’m not some leech living off the system. You know, I care for people. I’m not somebody who wanted a disability.”

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: