Jean-Sébastien Bourré, journalist
Testimony of Sylvie Boucher, former Conservative federal MP
As December 1, World AIDS Day approached, I asked my friend Sylvie Boucher, a former Conservative MP, to tell me how she got involved with a friend who died of AIDS in the 1990s.
At the time, there was great stigma against people with HIV and AIDS.
The disease was unrecognized and access to care limited, sometimes due to prejudice and stigma, sometimes due to lack of medical advances. Sylvie told me about her friend Amélia, who contracted HIV from a blood transfusion during knee surgery in the mid-1980s.
“When I first knew Amelia, she weighed 222 pounds and when she died, she weighed just 80 pounds. «
Shock
Amélia had a very bad surprise when she gave birth to her son in 1990. “They took her son away from her. She didn’t know why, the doctor hadn’t seen fit to tell her that she had HIV. She spent three weeks in the hospital without seeing her son, wondering what was going on. Then she got shocked, she went to the nurses and they said to her, « You can’t see your son, you are in awe. » She denied. «
Her friend had therefore spent almost five years living with HIV without knowing it. “There was a lot of talk about AIDS, but people were afraid. I remember when we went somewhere she didn’t tell anyone. People in her family knew nothing about it. When some of her friends found out she had AIDS, they stopped coming to see her. Not me.
She was my daughter’s boyfriend, I couldn’t conceive that because she had an unknown disease, that everyone would walk away from her as if she had plague. For me, AIDS was the same as a person with terminal cancer. «
Care, help and stigma
« I remember every day we went to the Hôtel-Dieu in Quebec, where she received cortisone shots in her tongue, because when she made a face, it felt like pus. She also had Kaposi’s sarcoma… « The stigma didn’t stop only with those around her. It was difficult to access care and any help in the public network.
At the height of the illness, when she knew she was doomed, Amélia sought help, but there was no way she would go and live at the Marc-Simon residence. “She didn’t want to go to the Marc-Simon house so as not to be labeled. She didn’t want it to be known. Yet she would have received exemplary care there …
One day, when I arrived at Amélia’s, she was lying on the couch. She was unable to move around the house. She was dirty, she was bleeding… I called the CLSC to have someone come and help me wash her; they refused. I called her doctor – it was 1994, but I remember it like it was yesterday.
The doctor said to me: « You are going to go to the pharmacy, the stock is in my name, you are going to get into the bath with her and you are going to wash her. The stock was a latex suit, like a second skin. I put her on and got into the tub with her to wash her off. Maybe I could have caught the disease … For ten years I was tested. Until 2004. «
Last moments
“When she died in the hospital, she had been in a coma for a week. She was bleeding from her eyes, her hair… all over the place. I was lying in bed and combing her hair… and I never had AIDS… « (Her voice breaks, sobs are heard.) » Sorry, that makes me emotional. «
Amélia died on April 23, 1996.
Continue to raise awareness among young people
At the time, Madame Boucher was very involved with her friend. She asked the infectious disease specialist to better understand the disease and intervene with her friend. One of her cousins had died of the same illness, but since she wasn’t particularly close to him, she didn’t know much about the subject.
This never stopped Sylvie from visiting her cousin, before he died of AIDS. Where he was staying for treatment, Sylvie had met Guillaume, a young man aged 17 or 18.
“He was terminally ill with AIDS. His father was a doctor, but both parents had denied him. When he died, there was Amelia, in a wheelchair, his sister and me. His parents never traveled. He was buried in a mass grave because his parents refused to let him be buried in the family lot.
Back then, you often heard horror stories like this about this disease. «
“The doctor gave my friend 5 years to live, but she died after 3 years. Her husband used to beat her to have sex. She allowed herself to die despite having a 5 year old child. Not many people know what she actually died of. There were four of us who knew, but her son was too young… She didn’t want people to think she had a double life. Especially for a married woman!
For her, this was unacceptable. Me, if I had had this disease, I would have made it a public battle. So that people understand. Amelia didn’t want that to be known. What I find deplorable today is that we hardly talk about it anymore. Our young people must be aware that this disease still exists. In the 80s, there were artists who died of it, so we talked about it.
Today, we die less, there is triple therapy, it’s a dead letter and I find it appalling that in 2021, a disease like AIDS is so little discussed. It is not true, as the myth suggests, that it is only gay men who have HIV. We must do this duty of memory. What I find sad today is that it looks like it’s been forgotten. This disease does not only affect gay men. I think it’s important in the collective memory to remember.
To never forget these people. We owe it to ourselves to tell this story. «
A duty, if not a responsibility incumbent on all of us.