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I had an insidious onset of schizophrenia during high school, beginning in 1971, and gradually lost all my human relationships over the next nine years without anyone realizing I was ill. I was completely alone by the time I became homeless in Calgary in 1980. I was very delusional and remained untreated for the next ten years. Eventually I got in trouble with the law and was court ordered to see a psychiatrist as a condition of my probation. That led to a hospitalization for alcoholism and the beginning of treatment for schizophrenia upon discharge in 1990.
Over the next several years, as I gradually realized that I had schizophrenia and what that meant, I had nothing to salvage from ten consecutive years of untreated psychosis: no employable skills, no résumé, no friends, no romantic relationships—just residual symptoms of schizophrenia that entitled me to disability benefits.
By 1995 I was attempting to do some volunteer work and then managed paid work delivering the local daily paper. I also started to make the occasional presentation about my experience. My experience was my only expertise, and I wanted to help prevent people from losing everything that I had lost. I thought that if I had known what schizophrenia was in high school, maybe I would have sought medical attention then, instead of by court order 20 years later.
When I was in high school I knew something was wrong. I experienced a lot of emotional turmoil and social anxiety; I worried about what people thought of me. My psychiatrist has told me that people with schizophrenia often experience emotional turmoil during the prodrome. They lose the ability to do things well and to enjoy the things they do well, and they lose human relationships. My ability to function at school, socially, and then academically gradually deteriorated. By the time I was in university I explained my poor grades to myself by believing I was a genius, years ahead of my time and my professors.
I fell in love for the first time when I was 17. However, as I lost the ability to maintain a long-term romantic relationship, I developed an equally intense relationship with marijuana. By the time I graduated from university with my unmarketable degree, I was smoking marijuana on a daily basis. I managed to get all the necessary pieces of paper to one graduate school by the deadline for applications. At graduate school I stopped smoking marijuana but kept showing up at the health clinic with medical problems, such as dioxin poisoning (which the Americans were using as a secret weapon in Vietnam), I was infected with a syphilis that couldn't be detected by normal laboratory tests. (It had rapidly evolved in Vietnam during the war.) I was referred to a psychiatrist, who immediately prescribed chlorpromazine, which I took until the side effects became quite frightening. I was expecting some elation and enhancement of my abilities as a result of the chlorpromazine—a kind of therapeutic marijuana, which it certainly wasn't.
It was 1978, and Jim Jones was trying to force me to commit suicide telepathically. I ended up in a psychiatric ward for two weeks. No one mentioned mental illness. No one mentioned psychosis or schizophrenia, and there was virtually no follow-up to my discharge from the hospital. I assumed that I had had a nervous breakdown, and I tried to finish my year. Courses went unfinished, and I was summarily kicked out of graduate school. After losing two jobs I headed out west to Vancouver Island, leaving my medication behind.
Within two years of my hospitalization I was homeless on the streets of Calgary. Tibetan Buddhists communicated to me telepathically everywhere I walked, telling me I might become the first Western Buddhist saint, because I had a lot of natural ability for the tantric arts. I caused the Mount St. Helen's volcano eruption for the Tibetans through my tantric powers to take pressure off the continental plates so that San Francisco wouldn't drop off into the ocean. I was homeless for six months.
Winter pushed me south to Victoria, where I rented a small basement room and studied Buddhism under Tashi Namjyal. Five miserable years later, in 1985, I was receiving messages from Beatles songs that there was a secret war going on between two groups of people who had these mental powers and if the antisexuals won (the celibate Tibetans), humanity would destroy itself in a nuclear holocaust that would break up the continental plates. I escaped, but shortly after arriving in Toronto, terrorists blew up a plane over Lockerbie, Scotland, an obvious attempt on my life by the antisexuals.
I managed to work at a department store changing light bulbs as they burnt out. I hated it, but being homeless was worse. Eventually cockroaches invaded my rented room, and I just got used to them.
By that time I was receiving messages from the aliens who controlled our evolution, and I was going to become an alien and have eternal life. When the aliens didn't transfer my mind to the body of a wealthy man in the south of France, I got furious at them for leading me on, started breaking windows, and ended up in jail for a couple of nights and then on probation for three years, with the condition I see a psychiatrist for that time. When I had finished paying restitution for the windows I had broken, I used my extra money to become an alcoholic, losing my job because my behavior had become so bizarre. I ended up at soup kitchens so I would have more money for beer.
Six months later, on welfare, I was spending almost all my money on beer-making supplies, and I was a couple of months behind in the rent because I was afraid to disobey the voices that ordered me to buy expensive imported beer with my rent money. I was willing to be admitted to the Homewood addiction treatment program in 1990—which to me seemed like a four-star resort—where I ate three meals a day for the first time in ten years. My delusions faded a lot in the sheer comfort of the place. I sobered up and on discharge started taking an antipsychotic.
I had a good psychiatrist, but medication was all psychiatry had to offer. Unfortunately, I had exhausted all my other options. The Tibetans, the aliens—each powerful friend I had entrusted my life with—had failed me miserably. Learned dependence for me was the relationship I had with my delusions before hospitalization.
The first few years were very painful. Ever so slowly I started to recover some functioning ability. Every year I was on medication, things got a little better—better friends, better housing, better functioning. Acquiring a computer opened a window on the world and allowed me to write proposals and create my own Web site (www.chovil.com).
I proposed to Homewood that I do community education for them, and I started in a work experience program that supplemented my disability benefits. Within a few years we were averaging 25 presentations a year, mostly to grade 11 physical education health classes of 16-year-old students. For the past three years, as a half-time employee of Homewood and with my own car, I have been making presentations with one volunteer who has a diagnosis of schizoaffective disorder. He receives $25 for each presentation. We made 47 presentations in the 2003-2004 school year.
I cover the symptoms and treatment of the major mental illnesses—depression, addiction, bipolar disorder, schizophrenia, eating disorders, and anxiety disorders. The volunteer then talks about the events leading to his first hospitalization, and I finish the 75-minute presentation by describing the course of my schizophrenia. Students have the greatest interest in the real-life stories.
In light of my personal experience and the long durations of untreated psychosis reported by the early-intervention PEPP program in London, Ontario (Prevention and Early intervention Program for Psychosis; www.pepp.ca), I became interested in the help-seeking behavior of adolescents and in whether our presentations had an impact on their preferences or the likelihood that the students would seek help for disabling symptoms.
A total of 1,370 study forms were completed by the students before and after each presentation (63 presentations in total). In filling out the forms, the students were first presented with the following paragraph: "Imagine someone you knew fairly well started to act differently, even strangely. Their work at school started to suffer, and/or they stopped socializing with people, and/or they were bored and uninterested in anything, and/or they were starting to talk about and believe in very strange and unlikely things, and/or they were drinking heavily and taking drugs, and/or they seemed very depressed for a long time and were getting worse, not better." Almost all the students said they would "talk to them and suggest to them they needed to talk with their parents, teacher, or family physician" (88 percent before the presentation, compared with 94 percent after). Many students said that they "would call their parents, teacher, guidance counselor, or family physician" (43 percent before compared with 66 percent after).
For the second part of the study, the question was rephrased slightly, and the students were given a nonexclusive choice of responses: "Imagine the same thing is happening to you. You just can't concentrate and do your school work, and/or you start sleeping a lot, and/or you're bored all the time, and/or you start drinking and/or using drugs a lot, and/or you start to hear voices and believe strange things are happening, and/or you find yourself so unhappy you start to think that suicide is the only solution. Which of the following things would you do?" The choices (of which students could endorse more than one) were "Try to handle it myself no matter what" (endorsed by 41 percent of the students before the presentation, compared with 27 percent after), "Talk about it with friends to get their suggestions" (56 percent before compared with 75 percent after), "Talk with my parents about what I am experiencing" (56 percent before compared with 75 percent after), "Talk with my teacher or guidance counselor" (30 percent before compared with 52 percent after), and "Make an appointment with my family physician" (48 percent before compared with 70 percent after).
Slight variations in the wording of these two questions and choices have been used, with similar results. Recently I have been using "I will recover on my own without help," instead of "Try to handle it myself no matter what," to try and distinguish the students who are unlikely to seek help before hearing the presentation.
Several psychiatrists suggested asking the students to choose only one response for the second question, and I've collected 448 forms using this approach. Talking with parents was endorsed by the highest proportion of students, and the percentages did not change greatly after the presentation (49 percent before the presentation compared with 46 percent after). Students' likelihood of talking to teachers and guidance counselors also did not change much after the presentation (7 percent before compared with 10 percent after). What did change a lot was the proportion reporting that they would recover on their own without help, which declined from 30 percent before the presentation to only 13 percent after, and the proportion who said that they would make an appointment with their family physician, which increased from 14 percent before the presentation to 31 percent after.
The students are fascinated with the personal experience of mental illness. Consumers have this expertise that they can put to good use—they can get paid for it, and they can help facilitate earlier intervention and better outcomes for the next generation. Many consumers only need the opportunities to make this contribution in order to become valued members of the community.
I think adolescents should receive better medical care than I did. These are disabling illnesses that can cause permanent damage, and I know that only too well.
Mr. Chovil lives in Guelph, Ontario, Canada. He can be reached at email@example.com. Jeffrey L. Geller, M.D., is editor of this column.
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