The concept of meaningful activity was usually applied to people like me, with a long history of less then optimal treatment, and considerable resulting disability. We are dependent on disability benefits to pay the rent etc.., and can become very isolated by our illness. For younger people with schizophrenia it is probably even more important that they return to school or employment as soon as possible and if they can do so successfully they can be spared the lack of meaningful activity that older people with schizophrenia commonly face. On disability benefits you don't have enough money for many recreational activities, or for the rent either. Depending on the degree of negative and cognitive symptoms, people will have trouble enjoying activities that once gave them pleasure and trouble socializing with other people. Employment can be very difficult and too demanding. Because an individual develops schizophrenia as they are assuming adult responsibilities such as marriage and employment, they usually have no partner or employment experience and may never develop those experiences. They may find it difficult because of low motivation to do much of anything. Dr. Weinberger compared schizophrenia to the TWA passenger plane exploding in mid air over the Atlantic. With early diagnosis, the atypical medications, community support, and family education the plane is landing instead of exploding, but not at the destination the individual expected. It can very hard to live with even those losses. It can be hard to even appreciate what those losses are.Seventeen years ago I started going to a day program where we played Euchre and scrabble and went on trips to local conservation areas. It was a little insulting but there was nothing else. I had a lot of free time, very little money and no friends. I made a few friends at the program and we used to go to coffee shops a lot, and hiking and biking on trails around Guelph. We struggled with our low incomes, rolling our own cigarettes, walking a lot. Because schizophrenia is hardest on young males and post menopausal women, we were the main participants in the program. As young men we wondered where all the women our age were.
It was a very difficult period for me because I didn't have anything. My self esteem was at an all time low. I had virtually no meaningful activity that I enjoyed. I was very aware that I had lost a lot of time and wanted to return to university and find a girlfriend. It took several years to realize that I wasn't going to pick up the pieces and return to graduate school.
There are no easy answers for meaningful activity. It depends at least partially on the degree of disability. Some sort of part time job that brings in some extra money can be very therapeutic. The individual gets out, associates with ordinary people, earns extra money, develops new skills, feels more competent, etc. The segregation of day hospitals and similar programs like the one I described above, where you socialized with other consumer/survivors has been replaced with case management where a worker visits you once a week or so in your home to see how you are doing. The buzzword was and still is community integration, which is going to be very difficult to achieve for an isolated, disabled population, that never married, can't work full time and usually depends on disability benefits to survive day to day..
There are now consumer run agencies that can provide employment, social, and recreational opportunities. With schizophrenia you often have to develop a new peer group because your ordinary friends moved on a long time ago. The less interaction you have with ordinary people though, the less community integration you are experiencing. None of the people I know with schizophrenia, except for one or two, have returned to full time employment but at least half have part time jobs and most have some recreational activities that they enjoy very much. They've adapted to varying degrees to living on their own in the community. Some are still quite isolated socially, and I know what that is like.
I don't think it is a coincidence that John Nash became famous for a PHd on noncompetitive game theory. During the prodrome of schizophrenia you have no choice about being noncompetitive. That is you lose your abilities to compete in any venture, whether it be romance, school, jobs, housing, or even sports. The primary characteristic of mental illness is disability, and when that happens in schizophrenia it usually causes a lot of emotional turmoil.
Even though I have been fairly stable on medication for many years now, I am still not able to compete with other people in goal oriented behaviour. Schizophrenia is "a road less taken". Even when people are stabilized on medication they often experience some degree of disability that leaves them unable to compete for the things everybody wants. You have to find other meaningful activities that nobody else is interested in. Typically these activities won't earn you much money, get you the most desirable housing, or lead to a date with attractive women. They are a lot younger than you are. It's actually a very difficult road to walk gracefully.
In the movie "A Beautiful Mind" John Nash first thinks of his now famous noncompetitive game theory when the guys are at the bar and discussing the hot blonde babe that just walked in. His friends mock him because women tend to reject Nash when he starts to talk to them. His friends know they have a competitive edge on him, but Nash looks at the situation differently, arguing that if each of them goes after a different girl, then each will be more successful. People forced by their illness not to engage in competitive struggle that they always lose, do potentially have a great deal to offer society as a whole. When you only recognize the winner of a competitive struggle, you lose a lot. And that's why I don't follow sports at all. To me it is the neofacist sports complex that only legitimizes the suffering of the people who don't win, particularly the homeless mentally ill, and generally the marginalization of all mentally ill in our culture.
When I was sort of able I started volunteering at different places but wasn't very satisfied with the experience. Its hard to volunteer when you are so needy. I tried to be a camera man for Rogers Cable Community programing. I had trouble showing up on the days I said I would be there. After awhile I submitted a proposal that I produce a 10 part series on the Mental Health System in Guelph. I got the idea from someone who organized four shows on mental illness, one of which I was in. It was difficult to get people with mental illness to go on camera and I focused on the mental health system instead. I was very surprised when it was approved. I was the producer and host. They played every Tuesday night, with a new show every month for 10 months. They weren't the greatest but it was quite something to see myself in a show about mental illness every week. I became a bit of a celebrity in the Guelph mental health system and was courted for this and that committee and board of directors. I also started to do some paid work delivering flyers Sunday morning for Canada Post. My case manager had a phone number and I started right away. A few months later I switched to a newspaper route which was more lucrative, although that is a relative term. Rosemary gave me that idea. She had been delivering the daily paper for several years at that point. Rosemary and I moved into a two bedroom apartment in the building where I delivered newspapers, and life was really quite good for awhile in its own way.
After the tv series I tried to create my own job. I was on the speakers list at the Canadian Mental Health Association and was giving presentations three or four times a year and really wanted to get into the high schools because I had lost so many years not having any knowledge about schizophrenia. My efforts resulted in a program which ran for ten years and was taken up by another agency when I took up my current position. We made 44 presentations in 2004 to mostly grade eleven health classes in fifteen high schools. I could usually find a volunteer with mental illness to accompany me and I paid them for their expertise.
After five years of essentially paid volunteer work I was able to secure regular half time employment with a large mental health agency. I got an office, a telephone and a budget for expenses. I worked out of my apartment and in the community most of the time though. Over the years I was fairly successful in raising money for various small projects. Lundbeck pharmaceuticals supported the high school project for a couple of years. Eli Lilly sponsored me to attend Schizophrenia 96 in Vancouver and Schizophrenia 98 in Toronto. Eli Lilly, Janssen, Zeneca, and Lundbeck invite me to attend educational dinner presentations in the area as well. I owe a lot of my education about schizophrenia to the pharmaceutical companies, and the psychiatrists they invite to speak at different events. I found the dinner presentations so useful in fact I hosted one each spring for the high school teachers.
I was able to try a great many things, often for the first time over that ten year period, with funding from various sources and cooperation from colleagues in the mental health system. Since I have been on staff in my current half time peer worker poisition, my life has in some ways become more mundane. There is always something new, but I'm not winning awards every year like I used to.
My first award was for the television series I produced and hosted. I received a Certificate of Merit from the Federal Minister of Health. Someone at the station nominated me. Mrs Raffan nominated me for the "Flag of Hope Award" from the Schizophrenia Society of Canada, for the community education I was doing through my web site and the high school program. I was flown out to Kelowna, British Columbia to receive that award. An Eli Lilly rep nominated me for the "Courage to Come Back Award" presented by the Clarke Institute of Psychiatry Foundation. There was 800 people at that dinner, and I was introduced to Hillary Weston, Lieutenant Governor of Ontario. The Barrier Free Committee in Guelph presented me with an "Access Recognition Award" for the high school education program I had initiated. The one that means the most to me though, is the "Award of Excellence" presented to me by Guelph Mayor, Karen Farbridge. There are four given each year to Guelph citizens for their contribution to the community. How often does a municipality give a schizophrenic an award for his/her contribution to the community? That one meant a lot to me.
I was in the local paper many times over that ten year period, six or seven times with my picture attached to the story. I wrote four articles for them as well. The Toronto Star printed an article about me winning the Courage to Come Back award. Next door the Kitchener Waterloo Record printed one article on this web site, and one on my experiences of schizophrenia with good photos as well. I've been quoted in a number of other newspaper articles in Toronto and made brief appearances in various television news reports. In the debates in the Ontario legislature two MPPs quoted me and my name appears twice in the Hansard. I appeared on the CBC National news when the Movie "Me, Myself, and Irene" came out. I was asked to appear on the Debra Duncan Show in Houston, Texas which was interesting, but they never sent me a tape of the show. I got a call from Esquire magazine, for an interview, which I didn't get paid for, but there were a few paragraphs on my experience of psychosis in the summer 2003 edition, the one with a big picture of J Lo on the front.
Some years ago the Rotary Club of Guelph videotaped my presentation at their meeting and with money from Lundbeck Pharmaceuticals I had 16 copies made which I distributed to local libraries and agencies. There have always been opportunities, and I think that is what meaningful activity is all about, providing a range of opportunities that people can explore. Volunteer work is never designed for the individual doing the work. It is to fill a gap needed by the organization. Why can't organizations create volunteer opportunities for the people who would benefit from particular experiences? I started in volunteer work but literally had to create my own opportunities.
Basically I have no career training, no employable skills. I doubt I could work at any regular job. I was making up to 80 presentations a year on schizophrenia and mental illness in a half time community education position, roughly half to high school classes, but for the last two years I've been a half time peer worker for a local ACT team. I facilitate recreational and social activities mostly, and share my experiences along the way.
I've had four articles accepted for publication in various journals. Someone left a comment in my guest book that the one I wrote for the "Schizophrenia Bulletin" entitled "I and I, Dancing Fool, Challenge You the World to a Duel" was required reading at her medical school. Most journals have a regular space for consumer articles. I've been very lucky in getting articles to print, although it is also quite stressful to have an article published.
Olanzapine made a big difference in the meaningful activity I can do. It's a therapeutic aspect of medication that is often overlooked. Not only is there a reduction of symptoms per se, there is a greater integration in the community, and greater satisfaction from the activities you can participate in. I think adding Seroquel made a difference too, and the Effexor I took all winter was very effective in preventing the usual Seasonal Affective Disorder I experience in the winter, up here in "Siberia".
I am not a very effective employee and I do tire quickly. I often find work too stressful to be really enjoyable. I think it's important to enjoy your work and I have little choice but to keep working until I do. Pacing myself over the week is probably the most difficult thing I have had to learn. I do need time to be inactive, and I've noticed that everybody else seems to have more energy than I do. Partly because of medication side effects I have a hard time making a 8:30 AM morning meeting. I feel like I am in a kind of semi-retirement where the number of hours I work and my income will probably decrease over the years to come.
I have very little in the way of hobbies and recreational interests. I love nature, particularly old trees, and I go hiking every weekend for three or four hours with a friend. A good hike is when we see some wildlife like a red fox, a deer or even a rabbit. I kind of envy their wildness.
I think celibacy is one reason men become audiophiles. My strongest interest is a good stereo system. I will never be able to really afford audiophile equipment. To start you have the right space to set it up in. Even bad music sounds good on audiophile equipment. It's quite the learning curve too.
I consider romantic relationships to be the flip side of meaningful activity. I was never sure what I needed most, a girlfriend or a job. You need both to be happy, but which is more important? Which ever one you have your life will be miserable if you don't have the other. But there is always "a price for the asking" and every woman is looking for a man who earns more money than they do, partly because men do earn more money than women in our culture.
Because of my delusions I now love science fiction about aliens. I enjoy sci-fi movies like "Contact", "Galaxy Quest", "Spaceballs" "The Matrix". I watch tv a lot, mostly CNN and the BBC world news, but I also like documentaries, national geographic civilization, and PBS shows. The History channel is 90% World War Two, but I don't believe them. I think there is more to world history than that. These days I watch Stargate Atlantis, and Battlestar Galatica, both essentially military sc-fi, which is difficult for me. I can't read very much and it doesn't look like that will ever come back. I like cartoons like "Calvin and Hobbes" and I've bought all those books. I read a weekly newspaper, the Guardian, which is quite well written, although it gets bogged down in politics now and then. I used to have trouble attending conferences too because I couldn't sit in one place just listening for very long. I think school would be out of the question.
What is schizophrenia? | | My story | | Condensed story | | Recovery | | Prodrome | | Medication | | Compliance Early Intervention | | Relapse prevention | | Cognition | | Housing and benefits | | Meaningful activity | | Family and social support | | ACT Teams | | Movies, books | | Web sites | | Poster | | Origins of this site | | Persistent delusions | | Photo of me | | My addictions | | First graph | | Guest book 2004 | |