They were told they had just months to live. Decades later, they're still here.

CBC

04-02-2025

Ottawa
'We were supposed to die. We didn't die.' 4 Ottawans reflect on decades of living with HIV
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Reported by Ash Abraham, Anchal Sharma Produced by Christine Maki Feb. 2, 2025
HIV rates are rising in Canada and Ottawa — but a diagnosis means something very different than it once did.
In this series, Still Positive, CBC Ottawa shares first-person experiences of those living with HIV over the decades and how they view being positive.
Alex's story | Sheena's story | Gustavo's story | Mikhail's story
Alex's story
When Alex Johnston laid his 88-year-old mother to rest recently, it brought up complicated feelings.
The 62-year-old was diagnosed with HIV in the early days of the virus, and had at one time believed his mother might outlive him.
After more than three decades living with an illness that's very different than it once was, he's seen the ups, the downs and the long-term consequences that come with a positive diagnosis, from the unique perspective that only those from this community have.
'It's like another lifetime,' Johnston said of those early years navigating the illness. 'Not a lot of people share that memory.'
'An ongoing, continuous death'
Johnston's diagnosis came in the 1990s, just a few years after his partner's. Though it wasn't a surprise, the news was still devastating.
'It's like watching … a disaster unfold. You're helpless to do anything about it,' he said.
He recalls his doctor at the time telling him he might live another 10 years, and not to be upset about that prognosis because back then that was longer than most.
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'Nobody offered us any hope. They thought that would be, I guess, cruel,' Johnston reflected.
Within a year, Johnston's partner succumbed to the virus, followed by a number of longtime friends.
'There was an ongoing, continuous death,' he said, adding he often couldn't bring himself to attend the memorial services.
'I didn't see much of a point because I was supposed to follow them, you know, within two months or two years … and I didn't want to go through that sadness at the time.'
Johnston found solace in building community and bringing people with HIV together.
Alone in his bedroom, he worked with the technology of the day to facilitate phone calls through a computer server, giving people with HIV a way to communicate directly with each other at a time when no one else would engage with them.
'We were the lepers of the time,' Johnston said, recalling friends in hospital who were being treated by doctors in 'space suits.'
Johnston says more than 2,000 people used the service. Enabling those connections helped him feel less powerless.
'Before I was taking care of [my partner],' he said. 'Now, I was sort of taking care of the community.'
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Johnston says it also helped to attend a local IRL support group for HIV positive gay men.
'We had a number of group members who lost their partners,' recalled Diana Fox, the counsellor who ran the group at Counselling and Family Services Ottawa, then Catholic Family Services Ottawa.
Others, she says, were disowned by their families or shunned by the community.
We were the lepers of the time.
Alex Johnston
The group was a place for them to grieve, share stories and build connections, but it also provided practical support: Fox says some members shared their medications and even opened their homes to those who'd lost their own.
'They really did step up in roles that they had no experience in,' she said.
When someone died, the others would commemorate them.
'We went to a lot of funerals,' Fox reflected. 'There's a lot of grief associated with HIV.'
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Sheena's story
As a woman, Sheena Paterson didn't think she could contract HIV, and didn't discover her diagnosis until she'd been living with it for a decade.
Paterson was using intravenous drugs at that time and struggled with alcohol abuse. She says she still remembers the phone call from her health-care provider back in 1994.
"I don't remember the phone dropping. I don't remember fainting. I just remember picking myself off the floor and asking my friend to call my mom right away,' said Paterson.
She said the doctor told her that her CD4 blood cell levels — one of the main measures used to track the progress and severity of HIV — were so low that the virus had already progressed to AIDS.
Paterson's weakened immune system opened her up to opportunistic infections, and doctors told her she had just months to live.
Thoughts of her seven-year-old daughter motivated her to seek treatment right away. But the medications came with a number of "horrendous" side effects.
'It felt like razor blades were going through my skin,' she recalled.
Paterson's diagnosis also led to real financial consequences.
She said at the time, she didn't have a good understanding of how HIV is spread, so she quit her job working with kids out of fear of potentially transmitting the virus.
'I did not want to put children at risk,' said Paterson.
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The medication's side effects made it difficult to work, and Paterson says she's struggled over the years to manage on the Ontario Disability Support Program.
Today, Paterson says her health has improved with new treatments and she's doing well. She's also glad to see a growing awareness about HIV.
Paterson still remembers 20 years ago when her daughter came to her crying after overhearing a warning from a friend's dad about going to her house.
'He said: Don't drink. Don't you dare eat any food. Be careful what you touch. Line the toilet seat before you sit down,' Paterson's daughter told her.
Today, things have changed.
'Last summer, I tripped and cut my knee open. A lady came over to help me. I said, 'No ma'am, I have HIV. I don't want to hurt you.' And she said, 'I am not afraid of you,'' Paterson smiled.
Gustavo's story
After surviving the early days of HIV, Gustavo Hannecke had a new challenge: learning to live.
'We were supposed to die. We didn't die," said Hannecke, who was diagnosed in 1999. 'We become this first generation that is surviving and surviving more or less well, normal lives.'
But turning around from expecting death to embracing life wasn't easy, he said.
Born in Argentina, Hannecke grew up with traditional views as the son of a Baptist pastor.
'Being gay in that environment was not an option,' Hannecke said. It was particularly difficult at that time.
'After the coup in Argentina, people — and specifically gay people — were disappearing, they were killed by the military as part of the cleaning of the country."
To avoid that fate, he married a woman, had children and became an assistant professor of physics, before working in telecommunications and eventually ending up at SystemHouse in Ottawa.
Hannecke says when he revealed his diagnosis to his family back in Argentina, they disowned him. Their reaction weighed heavily on his mental health. During a low point, he attempted to take his life. After that, he was determined to turn things around.
'From now on I am going to really live my life,' Hannecke recalled thinking.
He decided to become a visual artist, while working as an employee of the AIDS Committee of Ottawa. There, he shot a collection of portraits of people living with HIV, with the goal of showing the humanity of those with the diagnosis.
'We are not HIV. We are people.'
Mikhail's story
Mikhail Marcil has also turned his diagnosis into colour, joy and hope.
Known on stage as Dixie Landers, Marcil says his drag persona has helped him cope with the HIV that unbeknownst to him, he'd been living with for nearly two decades.
'It was like [being hit with] a Mack Truck,' he said of the moment he learned he'd contracted HIV through a blood transfusion at 13 from the Red Cross.
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Marcil says he went from being a social butterfly to a recluse.
'There was a very short time where I thought about it every freaking minute of the day, from the moment I was awake until I was asleep.'
Marcil says he lost a lot of friends to HIV in the early 2000s from opportunistic infections, and said the mental toll of living with the stigma was high.
'It can be difficult. You can really let it get you, and the way you feel mentally affects your whole physical being as well,' he said. 'I'm just very happy that I had drag.'
Marcil has spent the years since his diagnosis doing drag shows to fundraise for causes close to his heart, including the HIV/AIDS movement.
'I started educating people on HIV and AIDS, and the difference between undetectable, detectable, untransmittable, transmittable' he said.
His favourite thing is bringing joy and laughter through his performances.
'I mean, a good laugh from inside … [to] make you forget the issues you're dealing with and raise some money while I'm doing it,' he said.
A history of care
'So many people in this community have survived things you only read about or watch in movies,' said Linda Truglia, executive director of Bruce House, an organization that has been providing support and housing for people in the AIDS community for decades.
Since she started in 2011, Truglia says she's seen so many people die that finding ways to commemorate them has become an informal part of the job. That involves everything from conducting a traditional Indigenous funeral ceremony to buying plaques for the graves of people estranged from their families.
'I always go back to care — making sure people feel loved and cared for and like they mean something to us,' she said.
Truglia says though death weighed heavily on this community in its early days, that has changed dramatically as people now live longer, healthier lives. She adds that their needs have changed too.
Now, more of the organization's effort is going toward supporting their clients in the long-term, from stocking food banks to mental health support.
Johnston's second life
It's now been more than 30 years since Alex Johnston was first diagnosed with HIV.
In that time, he says he's had to learn to embrace life again. But it didn't happen overnight. While new medications helped him go from near-death to physically thriving, it wasn't until recently that he felt stronger mentally.
'It's only been, like, two or three years … that I've been able to talk to anyone about [that time in my life] without falling apart,' he said.
Johnston says he's now beginning to process the trauma and loss he faced — but with so few people still alive who went through it with him, it's a challenge to find others who really understand.
'I only have one friend left alive from that time, and he lives in New York City. When we get together, it's like we're war buddies,' he said.
Today, despite the enormity of the loss he's experienced, Johnston says he feels blessed to be able to tell his story, no matter how difficult.
'Our motto of the AIDS movement is 'silence equals death,'' he explained. 'Even though I've suffered a lot, I've seen how much worse it can get. I'm very privileged to be alive.'
If you or someone you know is struggling, here's where to get help:
Canada's Suicide Crisis Helpline: Call or text 988.
Kids Help Phone: [phone]. Text 686868. Live chat counselling on the website.
Canadian Association for Suicide Prevention: Find a 24-hour crisis centre.
This guide from the Centre for Addiction and Mental Health outlines how to talk about suicide with someone you're worried about.
Reporting by Ash Abraham and Anchal Sharma. Produced by Christine Maki. Videos by Francis Ferland. Original art by Eric Kostiuk Williams and Gustavo Hannecke. Graphics by Fred Demers and Brooke Schreiber.
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