Health Education AIDS Liaison, Toronto

Toronto Life, June, 1999

Positive

An HIV diagnosis used to be viewed as a death sentence. Today, the growing number of longterm survivors calls into question some basic assumptions about the disease. What these "thrivers" seem to have in common is strenght of character and an optimistic outlook.
By Sky Gilbert

 

This is an article about hope. But it is also an article about AIDS. I do not mean to diminish the lives or deaths of those who have died of AIDS, and I do not mean to suggest that the battle against this grim disease is over. On the other hand, it's almost fifteen years since the HIV test appeared, and among the many people diagnosed back then are a surprising number of survivors. It's true that safe sex is as important as ever, but it is also true that the percentage of HIVpositive individuals who die from AIDS each year has decreased. The apocalyptic scenarios common in the 1980s Oprah Winfrey once predicted that a quarter of the U.S. population would die of AIDS before the year 2000 have been replaced by a growing recognition that many people are living long and productive lives in spite of their positive status. Indeed, some HIVpositive people have been so healthy since their diagnosis that they like to be called ''thrivers.'' Finding these thrivers is not difficult. Every time I asked, someone in the HIV community would answer: ''Yes, I know people just like that.'' Who survives? After talking to these four people, I have no doubt that the explanations for longterm survival are complicated. Why? Because, simply put, a human being is more than a physical body that gets ill. We have souls.

 


William Gilpin Age: 40
Diagnosed: 1986		 "I know exactly the day I received my diagnosis,'' says William Gilpin. ''February 6, 1986. I'd just turned 27. I believed I had six months to live. Back then, my way was to run my life on two separate tracks. I was privately on this HIV track. I had this AngloSaxon thing, of outwardly appearing fine to my family, my closest friends. I didn't want to be pitied. I told no one.''

When I asked why he agreed to be interviewed, to come out as a gay man and a longterm thriver, he said, ''I have a friend who married really young. He has a young son who's gay. The son is twenty, and he's tested positive. Oh God, it's terrible. My young friend was upset, of course, but he was open enough to hear dissident views. And I said, 'I want you to have a healthy skepticism about what your doctor is telling you. Just trust your own body, and how you feel. Do you feel sick?' No, he feels just fine.

There are thousands and thousands of people like that young kid. They feel the pressure. They buy OUT magazine and they see all these ads for drug treatments even XTRA! magazine. You never hear the dissenting view, or, if you do, it's a fringe thing. It upsets me very deeply.''

William attributes his strength in dealing with his diagnosis to his grandma. ''I was from a serious, churchgoing family. My grandma was always giving these homilies. She was a very wise person. Quite kooky in some respects, but she would talk at great length about people's will to live. And I think this sums up the whole AIDS thing for me. What power there is in the human mind over illness!''

 


Louise Binder Age: 50
Diagnosed: 1993		 When Louise Binder suggested to her (female) doctor that she be tested, the doctor thought there was no need. Louise wanted the test anyway. Home for the Christmas holidays in 1993, she got a phone call with the results. A phone call! The only counselling the doctor gave Louise was ''Don't cry.'' She went to the doctor's office and confronted her. ''And it was really clear to me that she did not want me ever again as a patient. She'd likely never tell someone they had breast cancer over the telephone never, never! I was told I had depending on how well I did on AZT two to four years to live.''

Louise partly attributes her survival to the fact that her husband (who tested negative) got her out of bed every morning, dressed her and pushed her out the door to her job (in human resources). She decided early that prejudice was other people's problem, not hers. ''Whenever I sense that I'm being rejected because of my medical condition, I think 'Well, why would I want to know you anyhow?'''

Louise is an activist, and much of her activism centres on treatment access. It takes too long to get drugs in Canada she calls the federal drug review ''dreadful'' and is angry that so few people can afford the drugs. She accuses some pharmaceutical companies of ''making their careers'' on HIV patients. ''We go to Berlin [for a world AIDS conference] and they say AZT is defunct. 'But we have nothing else, by the way!' We go to Vancouver and they say, 'We can eradicate this.' Now they're saying it will be twenty to thirty years. Stop the grandiose claims. Stop the speculation. Stop the insanity. Provide us with meaningful, uptodate information.''

Hope is a staple of her survival. ''There are lots of things to think about with hope. I'm not religious for me, hope is not going to be about prayer. And I don't think it's about how long you live, either. It's about how well you live''

 


Adam Shane Age: 39
Diagnosed: 1984		 For many gay men who lose their partners, the grief over their loss and the fear about their own possible demise cause incredible emotional turmoil. For Adam Shane, it meant a booze addiction, the same addiction he believes hastened his lover's illness. After his lover's death, Adam spent five years ''on the wagon and off the wagon.'' Finally, he decided it was time to change his life ''or else I'd die. And there was no way I was going to die like that.''

He started on a rigorous selfimposed plan of nutritional discipline, good sleep habits, exercise, vitamins, minerals and herbs. He cut out the booze and started using ''affirmations and meditations.'' (His computer screen is covered with examples: My Immune System Is Healthy, I Am At Peace With Myself, I Feel Life And Energy.) And he dissociated himself from old friends who were abusing drugs.

''I don't like negative concepts and attitudes. I didn't think I would die from the start, didn't buy into the 'AIDS equals death' idea. When AIDS first came around, people believed that, they bought into it, and some of them died. 'AIDS equals hope equals life' changes the course of the disease. It's sad, but we could have saved a lot of lives, if that was the message we gave from the beginning.''

Some people say that Adam, and the other thrivers, are all living in denial. In a way, they are, if denial means that they have decided not to lie down and die an early death. Is it possible that what people call a ''state of denial'' is actually a healthy state? That denying your early death sentence just might keep you alive?

 


Rob Johnston Age: 40
Diagnosed: 1985		 To some people, Rob Johnston is more than just an irritant he's a man with frightening, perhaps dangerous ideas. The AIDS Committee of Toronto calls him ''disruptive.'' The Church Street Community Centre (open to most community groups) has closed its doors to his meetings. Who is this guy and why doesn't he just shut up?

Rob had fundamental objections to a diagnosis most people accept without question. ''I was skeptical. When there doesn't seem to be agreement, I always find that very suspicious. Also when I first heard about Gay Related Immune Deficiency: GRID. Ridiculous. You don't have to finish high school to understand that viruses aren't brainy enough to pick out the gays from the straights.'' Ever since being diagnosed, Rob has been fighting not to enter what he calls ''the AIDS zone. The social stigma. The larger bracket for everything that we have in terms of the medical establishment AIDS service organizations, popular mythologies, the whole psychological aspect.''

In 1997 he founded (with Carl Strygg) Toronto's first chapter of HEAL (Health/Education/AIDS/Liaison), an international organization devoted to challenging the idea that HIV is the cause of AIDS. His interest in this radical notion began in 1987, when he read the work of Dr. Peter Duesberg, a renowned retrovirologist, who does not believe HIV has the qualities needed to make it an effective killer virus. According to Rob, many other physicians (and laypeople) don't believe that HIV causes AIDS. As you might imagine, his ideas have made him controversial.

''At a meeting of the AIDS Committee of Toronto, I stood up and said, 'With this horrific list of side effects, why would anybody want to take these drugs?' A doctor said, 'It's either that, or immediate death.' I flipped my lid, told her that was an absolute lie. The AIDS establishment doesn't want to admit there are people out there who are surviving for a long time.''



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