Reprinted from "Social Support" issue of Visions Journal 2011, 6(4), p. 14
In the beginning
My onset of schizophrenia was what is called "insidious," meaning a gradual onset of symptoms. For me, this occurred from ages 17 to 25 (between 1971 and 1979). Over that time I lost my girlfriend, all my friends and my family. I failed school and couldn't work, ending up in psychosis,1 homeless for six months and, in 1980, without anyone in my life who could have helped me get the medical attention I needed.
Over the next 10 years I survived an untreated psychosis, including one attempted suicide. I lived five of those years in Victoria and five in downtown Toronto. Somehow I managed to stay employed, but it was a challenge to keep a roof over my head and food on the table. I lived in abject poverty.
I had only imaginary friends—who often became enemies. When I got in trouble with the law in Toronto in 1988—breaking windows where I lived, angry at the 'aliens' for not transferring my mind to another body—I spent a night in jail. I was subsequently sentenced to three years probation with the condition that I see a psychiatrist for those years. It was only then that I started to get medical care for schizophrenia, although I didn't start on medication or get better for several years.
During my probation and the last few years of my psychosis, I become alcoholic. I thought the hop flowers used to flavour beer were a treatment for involuntary 'celibacy,' and so began drinking 12 beers a day after work. Before long I was unemployed and drinking my homemade beer all day, every day. My psychosis became much more intense. Behind in the rent, I was in danger of becoming homeless again.
A new beginning
In 1990, the psychiatrist convinced me to go into a residential addiction program at the Homewood Health Centre in Guelph, Ontario. As part of the program we attended Alcoholics Anonymous (AA) meetings, where I realized that I wasn't alone, and that many people around the world become alcoholics, even doctors and lawyers. I also learned that I had a genetic vulnerability to alcohol—my father had really loved his booze.
My psychosis faded in the sheer luxury of the hospital, and I started taking medication for schizophrenia upon discharge. I felt quite abandoned, however, once I was released.
I went to AA for several years after I left the treatment program and stayed sober, but never really fit in well there. It was far too religious for me, and I couldn't get past the first step. I could acknowledge that my life "had become unmanageable" (Step 1), but from Step 2 on I was expected to believe in "God."2 I was raised anti-religious and had no conception of God. I also didn't feel I had amends to make to other people; I had only hurt myself with my drinking. Many AA members were married with full-time jobs. I have never been so fortunate.
I did go to a day program after leaving Homewood, where I developed "human" (as opposed to alien) friendships with other people with mental illness. The day program was three afternoons a week of mostly playing euchre and Scrabble. But I also started to spend time with these new friends at other times. We went hiking and biking together, spent time in coffee shops, and had each other over for dinner. We laughed together at our wild delusions and shared our experience of poverty on disability support. Alcohol was far too expensive to waste money on and simply wasn't part of our lives.
With each year on medication I improved a little and became more and more capable of accomplishments I could take pride in. After about five years on meds, I tried volunteer work, then got a newspaper route, and then a paid work experience at the Homewood. Within 15 years of starting on meds, I had a half-time staff position doing community education. I had colleagues, bosses, programs I initiated and was responsible for, and volunteers I trained who were paid honourariums. I did outcome studies, made presentations at conferences, and wrote articles that were published in research journals.
My parents lived far away and I didn't see much of them. Their support for me grew as I gained accomplishments—which is a little sad, because I needed their support most when I had nothing. "Nobody knows you when you're down and out."3 There is a lot of truth in that.
A setback turned around
When my job in community education ended unexpectedly after 10 years, I didn't know what to do with myself—my work was my life. I no longer had all the human contact that work had provided. And I no longer had the feeling of accomplishment from doing my job. I had put all my eggs in one basket, and that basket was taken away from me. I had inherited money and was living comfortably, but all I could think about were my losses and my empty life.
After a year or so I started to become delusional again. And I started drinking again because it seemed to help my restless legs syndrome (RLS)4 that became unbearable in the winter of 2007. My doctors were polite and expressed concern about my drinking, but were unable to do much about the RLS. In my mind the RLS was a weapon of powerful outside forces trying to harm me. My only friend became the beer I was drinking. But alcohol is just a chemical that doesn't care if you live or die. This 'friend' destroyed my health and took all my money.
I became scared of alcohol and what it did to me, so started seeing an addiction counsellor. I tried attending AA meetings, but again never got past the first step. Gradually I stopped drinking and began to rebuild my health and take pleasure in other activities.
I started to appreciate how exquisite nature is, how beautiful humans can be. The movie Avatar had something to do with this transformation. [Avatar is the 2009 American film, directed by Canadian James Cameron, about the impacts of a mining company from Earth on an indigenous tribe on a fictional moon.] My awe and love of nature increased dramatically after seeing that movie. I started to appreciate the people I knew. I got a part-time job, working eight hours a week. And the RLS subsided some, becoming more of a nuisance than a threat.
Support and activity: investments in me
It's been a slow process making the investments of my time and energy in activities and relationships that are good for me, and it hasn't been easy. Schizophrenia, when it's disabling, tends to isolate you from the community. I never married, have no career skills, no kids, no grandkids, no membership in community organizations, no religion (all my friends are super religious), no big plans for the future, no specialized skills with which I could contribute to the broader community. It's been a humbling experience, which is why I like people with schizophrenia so much: they're usually very nice people.
I've been going to a weekly peer group for over 10 years. Most of us have schizophrenia. There is no structure to the meeting. We introduce ourselves with a question of the day (my idea), which anyone can suggest. It could be something simple like your favourite television show or something more personal like how you express yourself. That way we learn more about each other. We often go on to discuss related topics. A psychiatrist attends and participates; we can ask him questions about symptoms or whatever. We have some money from a drug company to subsidize recreational activities on other days, and plan those ourselves. We go strawberry picking every spring, for example.
For me, the essence of peer groups is the shared common experience. In this case: poverty, celibacy, lack of full-time employment, interrupted education and romantic life, dependence on government disability cheques and subsidized housing, daily medication, disability, and a relatively small circle of friends that doesn't include many people who don't fit the above criteria. At the same time, we are all unique and our differences make the group interesting.
My life is much more diversified now: some volunteer work, my part-time job, hiking with friends, bicycling in the country, my daily run, growing tomatoes on my balcony, listening to music, inviting people to dinner, helping friends, going to my peer group, taking vacations when I can afford them, reading the Guardian newspaper, and learning to cook new things.
I've learned that it's my relationships with other people that keep me stable, sober and sane, and I'm grateful to the people in my life.
About the author
Ian has been living with schizophrenia for 35 years. As a Consumer Consultant with the Homewood Health Centre in Guelph, Ontario, he made presentations on mental illness for 10 years. Awards received include a 1998 Flag of Hope Award from the Schizophrenia Society of Canada
- Psychosis is a group of symptoms made up of delusions (strong beliefs that aren't true) and hallucinations (sensing things that aren't there). Psychosis is a symptom of schizophrenia.
- To see the 12 Steps of Alcoholics Anonymous, visit www.aacanada.com/12s.html.
- From Wikipedia: "'Nobody Knows You When You're Down and Out' is a blues standard, written by Jimmy Cox in 1923. It's lyric, told from the point of view of a one-time millionaire during the Prohibition era, reflects on the fleeting nature of material wealth and the friendships that come and go with it."
- For more information on restless legs syndrome, visit the Restless Legs Syndrome Foundation online at www.rls.org.