People often ask me a simple question: Why, in their eyes, not mine, do I seem to function so well with schizophrenia? My answer is always that I have never consciously decided to quit taking my meds.
It was just 15 years ago that I had my first overt psychotic break in Edmonton. It was a cold dreary fall day when I first descended into the dark world of madness. It has been a slow ascent back into the light of sanity.
I took a severe, permanent detour from the academic course of my life into a life of service and advocacy for a group that is, to be entirely honest, mostly despised and feared in the main streams of society, and certainly little understood.
It is my belief that my willingness to be compliant with my medications comes from two things. The first is the reality of having been a child of five when my mother was first diagnosed with schizophrenia, a mother who still struggles to accept her illness.
The second is that I was blessed with the insight to understand and accept to the core of my being that I am, and will remain for the rest of my life, a person with schizophrenia. I believe the lack of this insight and acceptance by many of my peers results in many hospital admissions for patients who were originally stable on their medication regimes.
Lack of compliance with medication is such a huge problem for the medical community that it seems most psychotherapy for schizophrenics is for the express purpose of gaining compliance with treatment protocols rather than helping them to deal their new life as a schizophrenic.
I don't think that the same thing happens to those that are newly blinded or paralyzed. There the emphasis is on learning to deal with a new reality. A diagnosis of schizophrenia is just as dramatic a diagnosis, if not as visible.
Acceptance is a fundamental ideal of many of the world's ancient philosophies and religions and can be a powerful tool. When you accept your destiny, a peace can descend on your existence. I have had to accept the limitations of my reality and work within those limitations to, as my wife says, be as happy and as healthy as I am capable of being. It might not be the life that I dreamed of, or that society or my family expected, but it has become so very fulfilling.
Stigma does exist and must be addressed face on. Sadly I know from being a young child of a schizophrenic that most people, even at their best, don't think very highly of us.
I get depressed each time I read an article in what seems a constant stream of negative press. I do so enjoy rattling their reality with positive articles about schizophrenia. I believe the only solution for the negativity so common in the media is to have a constant stream of positive news go out highlighting positive achievements. I have found that the media can be approached, positive relationships can be developed, and "good news stories" can get run. My fellow schizophrenics deserve this.
It is not easy at times to allow myself to be so public and identifiable as having such a serious mental illness. I can't count how many times, while in the middle of joint research for a paper or abstract, my research partner has abruptly cut off communication because they found out about my illness. I have learned to take such things in stride. The only partner that didn't immediately cut off communication when she found out about my illness was my wife. Her response was, "that's interesting; so what?" I thought maybe she had never heard the word "schizophrenia" and didn't know what it meant. What I didn't know is that she had an extensive background dealing with individuals with mental illness, and has the ability to completely separate me from my disease.
When I do something like ask her if she thinks CSIS is bugging the phone, she just says, "no dear, but if you think that, you could spend less time on the phone." When she gives speeches about what it is like to be married to a schizophrenic, that's the first point she always tries to make, that you have to be able to separate the actions caused by the illness from the core of the person. She regards my little idiosyncrasies as just a colourful part of my character.
The second thing she always says is that, no, she doesn't have schizophrenia. That's usually the first question people ask her when they meet, and if they don't ask it, it's because they have just assumed she also has it.
Such is the stigma that we deal with everyday. A person who would never think of asking the spouse of a deaf person if they could hear, or the spouse of a blind person if they could see, will automatically assume that my wife must have a screw loose to be married to me. This stigma can come in many shapes and guises.
When I talk to family members of newly diagnosed individuals, I try to give them comfort in what may be the hardest time they will ever face. I try to stress that while their daughter or son may never be able to lead what most of society considers a "normal" life, they can live a stable, healthy and happy life within the limitations that the illness and their medications allow.
I was blessed to be born in a country with a health system that allows me access to state-of-the-art treatments. With each new genre of medication that comes down the pipe, my world, my life, has expanded. The old medicines allowed me to survive. The next wave allowed me function, and the latest medication change has allowed me to thrive.
Before my last medication change, I slept for 12-14 hours every day. When I was awake, I had to ingest enormous quantities of coffee to function. When I started Consta, I began to sleep only 7- 8 hours. That means I am awake for 40 hours more a week than I used to be. Imagine that.
In addition to being awake more hours, I am actually more "awake" when I am up. That's a cause for celebration, right? What happened in my case was that I upset a bunch of apple carts. My family and friends were used to me being one way, and when my old self – the before I became sick self – began to re-emerge, a lot of people in my life had difficulty with it. My family interpreted my new assertiveness to be aggressiveness. I've even lost some friends along the way. It upset my family so much that they wanted me back on the old medicine. It was a change that happened so abruptly they couldn't easily adjust. You can imagine how hard it was at first for me to adjust.
That is challenge we face as we come closer to a cure for this insidious disease. How will we make that jump from living with schizophrenia to just living? Will our support systems be able to survive a cure?
Austin Mardon is an academic, author, and researcher, and has been living with schizophrenia for the last 15 years. On Oct. 26 will be invested with the Order of Canada –Canada's highest civilian honour–in Ottawa by the Governor General.