Life After Death

Thirty years after HIV/AIDS was first identified — after it decimated gay communities across the country — a new generation comes of age in its long shadow
Photograph by Birthe Piontek
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 HIV ward 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.

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20 comment(s)

BrennanAugust 18, 2011 18:06 EST

Fantastic piece. Informative, moving, and well written.

LaraAugust 18, 2011 23:10 EST

This was an excellent piece - an informative but essentially human look into a culture that most of us never see. Beautifully written!

LenAugust 19, 2011 15:36 EST

What a powerful, moving, thoughtful article. As a 30-year old queer guy who's worked in HIV for almost a decade, and whose gay uncle died of AIDS in 1998, it resonated strongly with me on many levels. Indeed, trying to form new queer identities that aren't implicitly and explicitly tied to the sadness/fear of HIV has been a struggle. While I worry that young queers men's distancing from HIV is isolating for those of us who are poz (and an ever-increasing number of us are), I am thankful and hopeful at the fact that younger generations will not be quite so devastated by the loss of so many of our peers. We have a lot of work to do in terms of re-working HIV into our identities and lives in meaningful, visible ways. It is a new and different struggle; but as our queer ancestors have taught us, we have more than enough strength, courage, creativity and tenacity to overcome it. Thank you so much for putting into words an experience and struggle that is so unique, and so personal.

AllenAugust 21, 2011 10:29 EST

Excellent article. As a fifty year old, HIV negative guy, who began having sex with men in the late 70's (with wild abandon) and then spending a decade watching an entire generation die, I can tell you that the emotional wreckage is substantial, yet oddly ignored.

Like many gay men of my age, I have spent my entire adult life living in the present, with an eye on the future... and the past, while informative, seems so detached and spectral. There's a vague sense of loss, not only for those who actually died, but also for a generation of gay men who's lives would likely be very different if they had not spent a decade convinced they would be dead by the time they were forty years old.

AnonymousAugust 21, 2011 10:29 EST

Great article. I lived in NYC from 1978-83. Was in the thick of it all and have probably been positive since 1981 although not diagnosed until 1985. I\'ve experienced or seen most of the fallout of this plaque. One thing I\'ve learned that is never discussed is that you only hurt your parents more by not telling them about your HIV status. I can\'t count the times I\'ve seen horrified parents finding out their son was positive as he lay on his death bed. As hard as the news may be they all would have preferred to have the opportunity to care for and love their dieing son. They are your parents. They deserve that. That\'s their job. How many times have parents of dieing friends told me they wish they had know and had the opportunity to be there their son.

Its awful news and your instinct to protect them in understandable but I\'m telling you from experience. You\'re denying them the only thing that can give them some peace after you die. That they did what they could to make your last months or years better and to come to terms with your death. Life is often cruel, its part of the deal. They\'re adults and will deal with it.

If you\'re poz and afraid to tell your parents, please consider this point of view. Even if you\'re healthy and undetectable why deny yourself their support and love. That\'s what they want to give you in good times and bad.

ChadAugust 22, 2011 01:12 EST

This essay perfect (i.e., elegantly and thoughtfully and poignantly) captures the liminality of the "gay experience" of the 30-something-year-old homosexual: of wanting—indeed, feeling entitled to—"an ordinary life with an ordinary man and an ordinary golden retriever" in the long shadow cast by HIV/AIDS (both qua physical condition and qua psychological "cipher for everything that constrains [our] sexualit[ies] and [our] potential[s] for happiness"). It was a beautifully realized reflection on our experience, and a call to action for those of us who wish to believe that the Plague Years are merely a relic of a quickly fading, nearly incomprehensible past. BRAVO!

MartyAugust 22, 2011 12:40 EST

Bravo, Deja Vu for those of us pre-HIV. There is no longer enough attention paid to the fact that this Virus remains fatal. Here in US, wer'e so used to going to a Doc for a prescription, that few things mean more than another pill.

The article was extremely well written. How can we get it into the hands of every 16-28yr old?

In our Culture, living to 29 as we become Senior Citizens, is multiple decades away from 20. The realization that HIV remains deadly, comes far too late.

This, coming from someone who's burried friends and chosen "Family", by the dozens.

HelloAugust 22, 2011 19:54 EST

What an amazing article! Thank you for writing it. Also, @Anonymous, thank you for your comment. It is extremely profound. It is food for thought but I am still not sure how I feel about it. We also want to protect our parents.

ElfredAugust 22, 2011 23:54 EST

This is an incredibly sincere article. Realistically fearful but hopeful. I think that every young gay man will find this deeply familiar.

Lisa WAugust 23, 2011 12:10 EST

Wonderfully written piece. Very honest and thoughtful.

Lady BAugust 25, 2011 09:18 EST

Where to begin? And how not to echo the many eloquent comments of this equally inspired piece? It was moving and informative and I agree - how to get this into the hands of young people all over? This would also be a great addition to the We Demand conference happening this weekend in Vancouver. It's such a brilliant and personal take on something that has indeed become invisible to those of us who grew up with HIV / AIDS as having 'always' been with us. I also appreciated the reminder that we have become dangerously complacent about our civil rights. Radical queer politics...where are you? I will come back to this article many times and have already shared it with many friends. Silence does equal death. And so does assuming that the conversation is over. I'm glad that this one is still on the table. My hat off to you, sir.

ColumbusAugust 25, 2011 14:29 EST

This was an amazing article! I'm reminded of my own coming out experience with my mother a few years ago. She was a nurse during the early 90's, and she had so many stories of patients' and friends' (neither of which were mutually exclusive) battle with HIV. When I came out she cried, picturing me in the hospital beds that her friends had lost their lives in.

I sent this article to my whole family and just had an amazing two hour conversation with my mom about it. It was one of the best interactions I have had with her in quite a few years.

For that, I thank you Michael Harris.

staceAugust 25, 2011 20:59 EST

As someone from an even younger generation, I never even think to worry about the safety of my friends and family. But within my lifetime, HIV/AIDS was an active horror. It's shocking to realize how quickly we've become complacent and taken medical advances for granted. What
else uses treatment as prevention? Why do we think that that's good enough?

Consider my thoughts provoked. I hope to read more from Michael Harris in the future!

APRILAugust 27, 2011 17:09 EST

Thank you Michael Harris. Poignant, powerful, and well written.

Randy ReichertAugust 29, 2011 15:33 EST

It is interesting to see how those of us who are out of the closet live. I have a hard time trying to tell my close friends about being gay. I can't imagine being okay with being POZ.

H.M.August 30, 2011 10:05 EST

Thank you for publishing such a poignantly written article.
As a heterosexual, I also found the comments that \"heterosexual transmission accounts for \'only\' 31 percent of new infections.\"
\"And although a great deal has been made in recent years about rising rates among women, the proportion of female cases stopped growing more than a decade ago.\" Was this around the same time that the campaigns for public awareness decreased?
Combined with that statistic that \"almost a quarter of those men under age thirty have never even been tested\". Consider how many fewer heterosexual men and women have been tested? In my limited dating experience, men detest wearing condoms, so the potential for undiagnosed heterosexual infections and thus heterosexual transmission is probably higher than 31%.
Dr. Chris Tsoukas diagnosed the first HIV positive woman in Canada, after she was first sent to a psychiatrist to try to convince her she wasn\'t positive. We have come a long way since then but there is still a great need for public education in all segments of the population.

DavidSeptember 09, 2011 16:10 EST

I am a gay man in my 50s who lived the entire nightmare from sex in the wild 70s before AIDS existed through the darkest days and into the post-AIDS era and now the LBGTQueer era. In all that time, through all that loss, I can conclude now that IMO the new Queer movement where gay is subsumed into the other letters in a gender identity politics has done the most damage to cultural transmission between generations of homosexual males. No discourse is allowed any more that is by and for gay men only. This is exclusionary of trans and queers and others. The result is that lessons that could be learned, information that could be shared, stories that could build a community of men looking out for men is cut dead because it does not include the other queer letters. This development's contribution to the current AIDS rates and non-existence of any gay male community (outside of commercialized gay product culture) is taboo and unspeakable. Like many of my aging gay peers, I have withdrawn entirely from anything resembling the LBGTQueer community as it does not have anything but hostility and indifference to the gay men who are often now seen as the oppressors of queered people. Hetero kinksters are celebrated while gay men pushing marriage in the US have been labelled as enemies of Queer. It's your world, young people. It ain't mine. Good luck.

MelDecember 01, 2011 17:06 EST

Well said, Spud. You make me proud to know you. XO

Kevin SpenceDecember 01, 2011 18:01 EST

Well-penned Mister H. I can only imagine what literary treats you would churn out from a comfortable hovel on Salt Spring Island! Keep it up...

AnonymousMarch 25, 2012 19:52 EST

This hit very close to home. Recently diagnosed in in May, 2011. I have struggled with the decision to start medication and when the right time is. I reached that decision in the last two months. This article reinforces that decision. I will be happier. I could not describe why, but this story helped me figure out what I have been feeling for the last while. There is a poison running through my veins. I can do nothing. I feel contaminated. I see only negative people who cannot possibly understand the burdens that come with the diagnosis. I thought I understood having many positive friends around me. No big deal, right?

One cannot understand until they are told they are positive. My life changed and instead of living with great joy, I live in fear and panic and a sense of being very alone although I not alone at all. I feel that some of these feelings will resolve with starting medication. Thank you for sharing.

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