Rae-Leigh’s family has farmed for generations. She has continued this family tradition, currently running a small farm in Tilley, Alberta for 15 years. She had “an average Canadian dad”, she says. He was educated, successful, handsome, outgoing, and had lots of friends. Rae-Leigh’s parents divorced after 33 years of marriage, and her father took the opportunity to have a fresh start, traveling the world. At some point during his travels, he contracted HIV. “He didn’t disclose his status to anybody, including his family physician, his family, to anybody, because he was so ashamed and so embarrassed. So he just chose to ignore it and pretend it wasn’t a real concern,” says Rae-Leigh.
During the Christmas season in 2012, Rae-Leigh got a call from her father. He was in Thailand at the time and told Rae-Leigh that he was not well, and that they thought he had PML, a rare brain disease. He was having trouble eating, he was dropping things and he was shaky with his coffee cup. Terrified of needles, he asked his daughter to come to Thailand, to support him through a spinal tap. Confused and afraid for her father, Rae-Leigh says she was shocked. She hung up the phone and went on the internet. “I found out on Google that PML occurs almost exclusively in patients with severe immune deficiency, most commonly among patients with AIDS.”
When Rae-Leigh was reunited with her father at the Bangkok Airport, she hardly recognized him. He was thin; dragging his legs, and couldn’t move his arms. “I went to give him a hug and he recoiled, saying ‘Don’t touch me’.” The next day, she had a similar experience with her father as they were walking to a restaurant to have dinner. ”He lost his balance, he ran into a vendors table and cut himself. “He just wanted me to get away from him and he started crying. He was this big, handsome man sitting in this restaurant just sobbing. That was when he told me he was HIV positive,” remembers Rae-Leigh. Because of the stigma and misinformation around HIV, her father was afraid for her to even touch him.
“You’ve got a white heterosexual man in his 60’s. He doesn’t have HIV – that was the assumption”
Having done her research, Rae-Leigh knew there was good treatment for HIV. “I was just hoping to fix it,” she says. Rae-Leigh was surprised once again by their visit with the doctors the next day. It was then that they confirmed he had PML and told them he had three weeks to live. Her father had delayed treatment so long that his AIDS-related illness had taken over. “He didn’t have any education as to what HIV was; he just assumed it was a death sentence and he thought everybody would blame him because of his lifestyle. He also was stigmatizing himself and it was awful for him.”
He started to have seizures so it was hard to get him home to Canada, and once they did return, his family physician, who had been delivering his care for 15 years was shocked to find out that her client was HIV positive. Rae-Leigh thinks that they didn’t bother to offer him an HIV test because of his age and his demographic. “You’ve got a white heterosexual man in his 60’s. He doesn’t have HIV – that was the assumption.”
Her father started treatment, but because he was so ill, he had to be hospitalized in Saskatchewan. He spent the last of six months embarrassed, ashamed, stigmatized, and he didn’t want anybody to know about his condition. “He would ask for me to bring him whipping cream so he wouldn’t lose weight so people didn’t think he was dying of AIDS.”
“They gave him a plastic fork and knife and put a sign on the back of his wheelchair”
The stigma was even worse when he left the hospital and went to live at a long-term care home. His family first moved him to a private care facility which they thought would be ideal. He had his own room and there were doctors and nurses on call 24 hours a day. “It seemed like it would be more like a family atmosphere, because all he wanted to do was just to go home and die,” says Rae-Leigh, who was driving from Brooks to Saskatchewan twice a week to see her father. “One day, I found him eating at a cart table facing the wall in the dining room. All the other people were eating at the family table and being served and he had a plastic fork and a knife. And on the back of his wheelchair was a sign saying ‘Caution AIDS’,” remembers Rae-Leigh.
She moved him into another care home, but the stigma continued. “This time, they had a big sign on his door with the biohazard symbol. There was a cart by his door with gloves, a mask and everything. They were very impatient; nobody seemed to want to help him,” says Rae-Leigh, who ended up going to the nursing home every week to advocate for her father.
Her father died in a third nursing home, six months after that call on Christmas.
He died ashamed and embarrassed. “I’m advocating, not for him, but for everybody else. We sat in the same waiting room at the hospital and we saw other men in their 60’s and 70’s who were positive, and they were so ashamed” says Rae-Leigh. They are farmers, who don’t fit the stereotypes, so don’t think it could happen to them. When it does, they are horrified, embarrassed and so ashamed. Everybody in their peer group is afraid of them and their caregivers don’t have the education and are afraid of them also. We need to stop being so afraid,” she says.
“I’m a 40-something mom and, in my circle, we assume that the face of HIV is not my father. This is a risk to everybody and we need to work on ending the stigma. I have a friend who has been living with HIV for 20 years, he plays soccer and recently somebody found out about his HIV and didn’t want him on their team this year. The world would just be a better place if we could figure out a way to stop the fear. Nobody would be afraid to hug a person and we would all be better people.”
Join us on December 1, 2016, on World AIDS Day, for our annual Community Voices event. This year, the event will feature Luminous Voices, Calgary Men’s Chorusand One Voice Chorus and the emcee is Mike Morrison from Mike’s Bloggity Blog. Rae-Leigh will be there to share her story and talk about the stigma surrounding HIV. More information available here.
You can buy your tickets by clicking here.