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By Jeff Woolaver It is, in a sense, the most tragic of all illnesses; a kind of living nightmare like Alzheimer's striking a person at the very core of their being, forever altering the way they are, the way they reason, the very processes that constitute a mind and allow a person to decipher the day-to-day, minute-to-minute perceptions of everyday life. Unlike Alzheimer's though, that late twightlight ravager of life, schizophrenia strikes young. Most sufferers are striken in early adulthood, between 16 and 29. Family members, relations and sufferers alike turned up in the Richmond room of Charlottetown Hotel for a meeting of the Schizophrenia Society of Prince Edward Island this past Monday to educate themselves on the disease that has, in one way or another, entered their lives so horribly, so irretrievably. It was also a rare opportunity to network with other people whose lives have been touched by schizophrenia. Schizophrenia, says the society, is often misunderstood. Stephen, now 21 and just 13 when he was diagnosed remembers how, during the two-and-a-half years he spent in an Ontario treatment facilty, he often overheard staff members asking doctors if he was "faking it." "It's pretty frustrating. Now my mother and father know what it is and they say, well, he's having trouble with this, and then talk to the doctors about it," he says. "For instance, I would wake up in the morning and I would see shadows, hear voices, see things like men on the floor or different things moving around. That's probably on a day-to-day basis." Stephen says the battery of medications he takes -- a powerful daily cocktail of more than half a dozen pills--is working well, despite numerous aggravating side-effects: he shakes and his vision has a tendency to stay trained drunkenly on an image long after his eyes have moved on. He finds meetings, like those of the society, extremely comforting. "There's a lot of discussion that goes on that's helpful. What I learn at these meetings I relay onto my Mom and Dad. My Mom and Dad talk to me about it." A Charlottetown mother, who requested anonymity, painfully remembers the eerie inappropriate laughing, the long nonsensical running commentary -- addressed to no one in particular--that preceded her own son's inevitable diagnosis. Twenty-four at the time, he had just finished a sociology degree in Montreal and was aiming to continue in the field of education. Like so many others, the warning signs were grieviously misunderstood. "He did drink at the time and was messing around with some pot and this kind of thing. I guess that's not all that unusual for the age and we initially were convinced that the problems he was having were -- we knew something was wrong, something was off -- we thought it was drug related or alcohol related." She admits to equating the diagnosis of the disease with a death since the person her son, now 26, once was, has been forever lost in the ellipses and the unrealities that inevitably accompany schizophrenia. Like any mother she had hopes and dreams for her son. Now she hopes he can just live on his own. "There has to be hope. You've got to be hopeful because if you didn't, with an illness like that, you know, you'd cry all the time which is what I did when he was first diagnosed," she says. "I'm still reaching out there, grabbing at straws and saying, well, maybe it isn't really schizophrenia, maybe it will go away, maybe he'll be totally cured and everything will go back to the way it was before. I doubt it but miracles do happen and I pray a lot about that too." Mary Sage, president of the Schizophrenia Society of Prince Edward Island for the past fifteen years, is vying to change the Mental Health Act, currently under legislative review, so that it would allow involuntary treatment for schizophrenics too ill to know they need help. The problem is, given the remissive nature of the disease many sufferers, once they are feeling better, decide they don't need to take their medication anymore and thus wind up back where they started. "I think it's gone through the second reading. I don't know why it doesn't go through the third one," she says of the new legislation. "Usually if it passes the second reading, it's pretty well automatic it goes through the third one." Another problem, says Sage, is the society's inability to reach families of sufferers. Confidentiality prevents doctors and psychiatrists from referring patients to the Society. "So we put out notices, public service announcements. We put out leaflets in doctors offices and so on so the families can pick them up themselves. But what we would like is for the doctors to tell the families about us and would they like to come and see us and give them a phone number," says Sage. "Our mission is to alleviate the suffering caused by schizophrenia."
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