Missing Men

The story of Dakota Descoteaux

Over the coming weeks, I’m going to be sharing more stories about Canadian men who died at the peak of the HIV/AIDS crisis a generation ago, and the impact on those they left behind. Dakota’s story is based on an interview conducted by Ben Klassen, available through the University of Victoria’s HIV In My Day Archives. This large scale oral history project provides an invaluable resource for those looking to understand this time period. It won’t be long before all of us with first-hand memories of the thousands of people who died of HIV/AIDS are gone. Missing Men is part of my We Were Here project. I’m hoping this series might eventually become an animated documentary to accompany my first set of short films.

When Dakota came out in the 1980s, he was in his early twenties and living in Ottawa. Much of the nightlife happened across the Ottawa River in Hull (now Gatineau), Quebec. One night, a co-worker at the hotel where he worked invited him to a spot across the bridge, where he remembers seeing a dance floor full of only men, “moving their butts to Donna Summer’s Love to Love You – I thought I’d died and gone to heaven.”

Dakota soon discovered that, “There were lots of gay-friendly clubs in Hull. The discos would spin their tunes and serve alcohol until 3:00, while on the Ontario side, bars would close at 1:00. So, there was a very entrenched thing in Ottawa that people would go to the bars and drink until 1:00 and then drive across the bridge and carry on.”

Dakota was promoted by the hotel and transferred to Whistler, BC. After a year, he moved to Vancouver, where he was amazed to discover not just a handful of gay bars, but fourteen! It was what he imagined San Francisco to be like. The bathhouse scene was also thriving. Dakota met his first long-term partner at a bathhouse. He remembers the awkwardness of being asked by parents or straight friends, “Oh, where did you guys meet?” You’d have to say, “Um…We met at the gym.” In the pre-Internet days, bathhouses or bars were really the only places to meet men. And they were where real community connections formed, in the absence of more mainstream queer spaces.

Photo courtesy of BC Gay and Lesbian Archives, City of Vancouver Archives

By the middle of 1985, Dakota and his partner André were starting to hear rumours and read about the mysterious illness killing gay men. As soon as testing became available, they learned that they were both HIV-positive. Dakota says their strategy was, “Well, let’s just keep living our lives and not make any changes until we need to.” They had heard that symptoms might remain at bay for ten years, so when André started getting sick in 1989, they felt cheated. André had to stop working and Dakota moved from hospitality to a job in insurance, where he’d have at least some paid sick leave, even if he couldn’t get his own life insurance policy due to his HIV status.

Before long, it became impossible for Dakota to care for André on his own. His physical symptoms could be severe, but his increasing dementia was the challenge that proved untenable. He was no longer himself, behaving erratically and becoming reckless with money. Friends took him in, but couldn’t cope either. André’s mother took him home with her to Montreal, where he soon died in palliative care. It was a harrowing end to their relationship.

Dakota had joined an organization called Positive Living, where everyone could talk openly and vent about the medications that often caused worse symptoms than those they were intended to treat. Dakota says, “The disease and the drugs and the pharmaceutical companies, they were all finding their way. And there were no answers.”

A couple of years after André’s death, Dakota received a package in the mail.

“I start opening it and there – oh my god, it was André’s ashes. His mother sent them without telling me. So he came back to me in a box. He told me before he got dementia that if he ever were to die - of AIDS - he wanted his ashes spread at the Southlands Riding Club down in the horsey part of Vancouver. He used to be an equestrian long before I met him and he loved horses. So, I went down under the cover of night, ‘cause it’s illegal to spread ashes on private property (and public property for that matter). I spread his ashes all around the riding circle. I was able to have closure with it all and then move on, so I felt lucky for that experience.”

In 1991, Dakota met Robert, who had spent a year coming to terms with his HIV-positive status by living in a log cabin near Squamish, developing healthy habits which Dakota gratefully embraced. They moved to Robert’s childhood home and undertook its renovation. They were in their early thirties. Before long, they both started feeling a bit unwell - nothing specific, but just run down. Sensing that their time was limited, they took a few cruises and hosted lots of dinner parties. They had three great years before Robert started wasting away - becoming thinner and weaker until he died in 1996.

Dakota had spotted his first Kaposi’s sarcoma lesion some months before Robert’s death. Suddenly they were everywhere, including in his throat, causing trouble swallowing. He underwent treatment, travelling back and forth between the cancer centre and the hospital where Robert lay dying. He describes it like this: “The chemo and the radiation were external treatments that were like throwing a thimble of water on a forest fire. Something would shrink and a week later it would be back.”

Our confidence may have been shaken when Covid stopped normal human activity for a while, but it’s hard for people who didn’t live through the beginning of the AIDS crisis to fathom just how helpless and furious people felt. Not just patients like Dakota, but doctors too. In his autobiography about practicing medicine in the 1980s in rural Tennessee, Dr. Abraham Verghese (now also an acclaimed novelist), writes, “Seven years into the epidemic, four years after the virus that causes AIDS was discovered, two years after I saw my first HIV-infected patient… I still had no treatment to offer. Hand-holding, counseling, moral support, platitudes, bromides, prognostications, homilies. But I had nothing in the way of a remedy.”

Dakota had entered palliative care, anticipating that his cancer would be terminal, when a doctor came around and told him about some new medications, not yet widely available, that seemed to be suppressing the virus much better than AZT alone had ever done. Dakota started on a combination of the earliest versions of Crixivan, Stavudine and Lamivudine. They were very rough on the body. But they worked. Within a week, the cancer treatments that had seemed futile started having an effect. The doctor said, “You might make it.”

Dakota’s parents had come from Ottawa for Robert’s funeral and took him back with them to recuperate for a year. He reflects, “As a thirty-eight-year-old grown man, I moved back in with my parents, which was a wonderful thing for me to do. You know, Mom’s home cooking, and not having any responsibilities or worries really helped me heal. I started exercising and I gained twenty pounds. From being really sick, it took a while for me to come into my full health. In ’98, I returned to Vancouver and started a completely different life.”

In the worst years of his partners’ illnesses and his own, Dakota had felt like he was barely keeping his head above water. He had no energy for marches and protests. But he did benefit from peer support within the HIV community, and when he resettled in Vancouver, he found his purpose as a volunteer, facilitating similar kinds of groups. During the decades before HIV became undetectable with treatment or untransmittable with PrEP (pre-exposure prophylaxis), Dakota describes many gay men he met as “living their stigma,” feeling frustrated and bitter about their situation.

And yet there he was, someone who had come back from the brink - the brink of death and the brink of hopelessness after losing two partners and countless friends. He married an HIV-negative man, remained close with his family and became strong in spirit as well as in body. Dakota reflects that an HIV diagnosis today just means taking some pills alone in your bathroom. There isn’t the need for support that was so crucial thirty or forty years ago. And that comes at a cost.

Photo courtesy of BC Gay and Lesbian Archives, City of Vancouver Archives

Nobody would choose to go through what Dakota did, yet he’s quick to state that he wouldn’t want to be a young man now and that he’s grateful for the path he wound up taking. With loneliness and isolation proving such a social scourge and health risk today, he observes: “This AIDS community has been my life for twenty plus years. I mean, this is the community I walk in… the community of my volunteerism, of my leadership, of my support, of being supported. I feel a connection to everybody that has been a part of this community.”