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.