Life After Death: Thirty years after HIV/AIDS was first identified, a new generation comes of age in its long shadow
December 5, 2011
SAM GREW UP in an Alberta hamlet, a place of no consequence to anyone but those fortunate enough to have been born there. The kind of place where you raise two fingers off the steering wheel in greeting when you pass another car on the road.
Sam was a good kid, though a hurting one. He had journals filled with dark confessions. He had legs covered with scars from the time a pot of boiling water had spilled onto his three-year-old body. He was also gay and needed to get to a city. By his twenty-eighth birthday, having rolled through a few towns already, he found himself in Vancouver and searching for love. One night in October 2001, he let a man inside him for ten seconds before muttering, “Hey, you should probably put on a condom.”
Symptoms showed up almost immediately. Sam’s hands and feet became swollen. His tongue got itchy. His glands ballooned. There was dandruff in his golden brown eyebrows. He flipped through a book called The New Joy of Gay Sex and learned that after HIV enters your body, there are seven typical symptoms. He had all seven. For the next eight months, he sat with his self-diagnosis, unwilling to get tested. When he finally went to the clinic on Davie Street, a nurse gave him his results and said, “Do you need a hug? ”
“Yes,” said Sam. Then he walked out into the afternoon, found a park and lay down in the grass. He stayed there for a few minutes and just thought, “Huh.”
He cried only once, the following day, when he thought about telling his parents. But he knew by the time he had wiped his eyes dry that he couldn’t. At a certain point, he said to himself, you have to become a caretaker to your mom and dad, and this would hurt them too much. (Several names have been changed in this story, all because of mothers who don’t know their children are HIV positive.)
Sam didn’t think of his diagnosis as a death sentence the way he would have just a decade earlier. Thanks to the miraculous drug cocktails that appeared in 1996, HIV-positive people now live only slightly shortened lives; the disease is more a chronic condition than a plague. For years, though, he felt like a sexual leper, as if poison ran through his veins. (Which, in a sense, it did; like many others, Sam chose not to start a drug regimen until it became necessary.) His doctor monitored his weakening immune system by counting down a type of white blood cells called T cells. Sam adjusted to being one of the estimated 65,000 people in Canada who live with HIV.
And then something in his body swung wildly off course. Though his T cell count was still high enough that his doctors didn’t feel he needed drugs, Sam’s body wasn’t in agreement. He lost weight and couldn’t stay on his feet for the eight hours necessary to hold down his job in retail. Finally, baffled, the doctors admitted him to Ward 10-C (the HIV ward) at St. Paul’s Hospital, where he would languish in bed for the next month. But the meds the doctors prescribed didn’t cure the mystery ailment, so they started testing. While he lay there, Sam kept a score sheet, a page in his journal full of ticks like the ones cartoon inmates scratch into prison walls. He was counting the number of doctors that had inspected him (twenty-one) and the number of times they had taken his blood (seventy-two).
While the search stalled, Sam learned that, back in Alberta, his cancer-ridden father was in hospital, too. “My dad’s on his deathbed,” he told his friends when they came by with armloads of comic books. “Mom wants me to come home.”
“You have to tell them why you can’t come,” they said.
Before he could decide whether to inform his parents about his status, the doctors gave him more bad news. His weakened immune system had left him vulnerable to an extremely rare (and often incurable) disorder called Castleman’s disease. He was developing lymphoma and throat cancer. A doctor gave him the same prognosis that thousands of gay men in the HIVward have received: “You’ve got six months to a year.”
Sam called his mother and told her he couldn’t make it home, but refused to tell her why. He didn’t want his dad to die knowing that his son was dying, too. So in a final, desperate act of familial protection, he kept the unhappy truth to himself and left his parents wondering.
He didn’t cry into his pillow or rage against God. He wrote a makeshift will and, with a friend, planned his own funeral.
WHEN I FIRST HEARD Sam’s story, I was shocked. It seemed a tale out of step, out of time. I knew, or had a sense anyway, that tens of thousands of Canadians were living with HIV. But with all the talk of “undetectable” viral loads (thanks to brilliant drug regimens) and advertisements on bus shelters for one-pill-a-day lifestyles, it hadn’t occurred to me that people still suffered, and even died, from this virus. In South Africa, sure. But, like so many of the millennial generation, I preferred to think of my urbane North American self as “post-AIDS.”
HIV, once a curse, is now a casual aspect of many people’s lives. If you have ever clicked through the “men seeking men” zones of a dating website, for instance, you will have discovered that a good portion of users self-identify as “poz,” meaning “HIV positive.” This comes out in the About Me paragraphs, along with hobbies and tastes in music. If a potential dater is unwilling to date a “poz” person, he might declare himself interested in “clean guys.”
Earlier in this thirty-year-old epidemic, there were no “poz” guys. It wasn’t a lifestyle, or a mode of being. It was death. Friends of mine who are old enough to remember the plague years tell me the shift in attitudes toward HIV among gay guys has been tectonic. My friend Bryan will turn forty this coming Valentine’s Day, which makes him old enough to remember what came before, and young enough to bristle when I ask him about then versus now. He’s a bristly man in general, quick-witted and constitutionally unable to suffer fools. His age cohort was hardened and defined by AIDS in a severe way that my generation (I’m thirty-one) never was…