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.