One was a paediatric nurse; another a tradeshow exhibitor; another a musician and actor. Some are straight, some gay, some educated professionals; another was a run-away who lived many early years on the streets. Together, they represent the face of HIV – diverse in gender, sexuality, profession and upbringing.
In the lead up to World AIDS Day, Metro visited Toronto’s Casey House – once considered a hospice for those with AIDS to go in their final days; now a growing outreach centre as people living with HIV are living longer than ever.
We share some of their stories, and important messages in this new age of HIV treatment, here.
Jim, 47. Born and raised in Toronto, Ont.
A bit about him: Jim studied at the University of Toronto, worked first as an accountant, and then as a Registered Nurse in paediatrics for 16 years. He tested positive for HIV in 1994 and, after being diagnosed with cancer in 2006, lived at Casey House between 2008 and July, 2011. In the 90s, Jim took close to 40 pills a day, now he takes one pill, once a day. Jim has three nieces and nephews, with a fourth on the way. He was once an avid traveller and still is a voracious reader.
On his career in nursing: “It was the best thing I ever did, I found a job that I loved. I loved the challenge of it; nursing is a career where you never reach a point where you know everything. I worked with the most fantastic bunch of nurses and, most of all, the kids; I loved working with the kids. Kids are so resilient when they’re ill... So I loved it and it was devastating to me when I had to leave.”
On being HIV positive: I think people get the impression now that it’s a breeze; that you just pop a few pills and life goes on. But people need to realize that being HIV positive is still very difficult and comes with a lot... it’s a burden and not to be taken lightly. People need to still be vigilant and need to take responsibility for their own bodies and be sensible. It’s not a piece of cake let me tell you.”
On his future: “Earlier on in the 90s, doctors were telling me to get my affairs in order. It was a bleak outlook but now I face the prospect of having a life expectancy of, who knows, I may well get into my golden years. It’s nice to have to worry about retirement planning.”
Cindy, 43. Born and raised in Toronto, Ont.
A bit about her: Cindy was studying ancient civilization and psychology at the University of Toronto’s Innis College when she tested positive for HIV. It was 1995. At the time, she says, there wasn’t a lot of support programming for HIV-positive women in the city, but “she made a big stink” about that. Although her doctor once told her she had two years to live, the virus didn’t progress significantly. She did develop a spinal epidural abscess however, which she believes was either brought on or made worse by having HIV. She now gets around with the help of a wheelchair.
On getting infected: “I got infected August 22, 1994, because what I did, I only did once so I know the date. I think it was the date of the big subway crash at Dupont. I only shared needles once and that was the day.”
On women and HIV: “I told my story at a retreat how I infected myself and another woman came up to me crying and hugged me and said ‘I never thought I’d ever hear somebody say that because I did the same thing.’ And she’s a grandma. And it still remains my greatest moment in dealing with HIV. There wasn’t shame anymore, there wasn’t guilt. It was a ‘I’m not alone’ moment. So much of this disease can be isolating, especially for women. “
On HIV in her life: “It impacted my relationships, it impacted my family. My best friend in the whole world — we didn’t talk again because she wouldn’t let me hold her baby when it was born... It impacted all of my decisions.”
James, 57. Born and raised in Cape Breton, Nova Scotia.
A bit about him: James has managed a design business in California, has worked as a manager at Black’s in Toronto and for Revenue Canada, but he is a photographer at heart. When we met him, a Leica camera hung from his neck. He tested positive 15 years ago and says he once knew the flight attendant named Gaëtan Dugas, who become known as “patient zero” – one of the earliest carriers of the virus who contributed to its spread in North America.
How HIV entered his life: “Like a bomb.”
On his buying habits these days: “I went to ask my doctor and he said ‘You’re not going to die of AIDS, you’ll die of old age.’ So I went out and I bought the [photo] enlarger.”
Kevin, 48. Born and Raised on St. Joseph’s Island, Northern Ontario
A bit about him: Kevin studied musical theatre at Sheridan College, where he once was kicked out of the cafeteria for tap dancing on the tables. He’s still a performer, from fringe shows to playing in gospel singer Jackie Richardson’s band. After he was diagnosed in 1994, he attributes much of his survival to the support of his partner, who was also HIV positive and whom he met just months after his own test. They were together for 10 years and are still living well to this day. Kevin has written a memoir and earlier this year released an album of original music.
On Medication: “You remember how fragile you are as a human being every time you pop those pills.”
On the arts: “I think that’s what keeps you healthy, being creative.”
Kenneth, 51. Born and raised in Hong Kong, moved to Winnipeg at 16, on a student visa.
A bit about him: A graduate of the University of Manitoba, Kenneth later became a fashion merchandiser, responsible for buying lines for Le Chateau in Montreal, Diesel Jeans Canada, and later Holt Renfrew in Toronto. He found out he had HIV in 1986 after seeking an upgrade on his life insurance policy. One day in 2006, at a trade show in New York City, he realized he couldn’t walk a straight line. Related to HIV, he had developed shingles in his eyes. The condition would in the end take him from fully sighted to legally blind. He is now an active fundraiser and public speaker on HIV/AIDS issues.
On learning of his HIV status: “How are you going to tell your family, or your partner? It was a very quiet moment for me. “
On inspiration: “With no more job, I lost my home. I had nowhere to go. I had to learn a new set of skills. I guess it’s my attitude that keeps me going. I’m an achiever, I’m goal-driven.”
On prejudice: “Stigma and discrimination, it still exists. I was bullied once, they called me a chink. Now people judge me because I’m blind. We adapt.”
Tonie, 48. Born in Alberta, but adopted by an American family and grew up around the United States.
A bit about her: Tonie identifies as a Cree Indian. She ran away from home at the age of seven, living many years on the streets, including several years as a sex worker in New York City. She was deported back to Canada in 2004 and has lived in Toronto since. She moved into Casey House last month, when she had dropped to 88 pounds. She’s now 101 pounds, and gaining.
On HIV: “I wouldn’t wish this on anybody. I would wake up and think ‘What, am I going to die this year?’ I think for the first time in my life this year, I actually looked for help. This [Casey House] gave me a second life.”
On her adopted home of Toronto: “This is where I’m going to die. Not right now. Come and see me in 20 years.”
Bruce, 46. Born and raised in St. Catherines, Ont.
A bit about him: Bruce left home at 17, living in Los Angeles for five years and eventually moving to Toronto. He tested positive for HIV in 1990, at age 24. He kept his status to himself at first, and says he has been blessed by not being sick as a result, until last year. He worked many years in trade show marketing, but is now contemplating a second career, possibly as a pastry chef.
On living with HIV: “I never isolated myself away. I didn’t stop my life. My attitude was ‘I’m too bitchy to die. I have lots to do.’ They say only the good die young, so I always stayed a little bit bad... I’ve done it all, travelled three quarters of the world. I have no ‘What ifs.’”
On getting sick last year: “When you start to lose weight you open yourself to weakness. I was grey and gaunt, now I have my colour back, I have my life back... Casey House, it’s the best place on earth. The care that’s here, they’ve saved my life. We’d be dying if we had to rely on hospitals.
On the face of HIV: “It was considered a gay disease. [Now] it’s all walks of life. It could be your cousin, it could be your grandmother.”