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.