April 4, 2007

An unusual voice against AIDS

By Rob Aldred
raldred@uwo.ca

At 40, Jill Tremblay was an average woman. Average height, brown hair. Oh, she had her problems. She was, in her own words, "quite a heavy girl" at 220 pounds, and had been asthmatic since the age of 13.

But life was pretty good in December, 2002. Tremblay was a food services supervisor making $30,000 a year. Not rich, but comfortable enough to afford a small apartment. She was on the executive of her union. It was nothing for her to work 50 hours a week, she said, and feel good about doing so.

Jill Tremblay also loved to talk. Still does.

Problem is, now she's ill and on a disability pension. She also has a tracheostomy tube, the kind you see in those posters and television commercials designed to scare you away from smoking.

"My old voice used to sound like Mickey Mouse. Now I sound like 1-800-Sex-Talk," she says over the phone.

Her voice sounds a little hoarse, but you'd never guess she breathes through a tube in her throat. I tell her that.

"Thanks," she says, her tone brightening. "I'm kind of proud of that."

"It's taken me three years to be able to talk this well. And because I like to talk it's out of necessity and just plain ordinary tenacity," she says, laughing, but with unmistakable pride.

Tremblay has worked hard to speak well. She's made it her cause to help people avoid making the same mistake she has made.

Tremblay won't talk to you about the dangers of smoking, but she will talk to you about contracting HIV/AIDS. She is part of a team of volunteers from the AIDS Committee of London whose members speak out in public forums about the social and medical challenges that HIV/AIDS poses to individuals and communities. The program is called Stories of HIV & AIDS Related Experiences or SHARE.

Dana Nosella, the volunteer coordinator with the AIDS Committee, says Tremblay has been a source of comfort and motivation to many people struggling to cope with such a frightening diagnosis.

Tremblay has told her story to King's College women's studies classes, Fanshawe College nursing students, and various church congregations.

Tremblay says she gets angry at the stereotypes associated with HIV/AIDS. The Aids Committee says those myths discourage people who should get tested from seeking out medical attention, for fear of prejudice.

Photo courtesy of AIDS Committe of London

Volunteers share stories of HIV and AIDS related experiences.

And make no mistake; a social stigma is still attached to the disease. Nosella says confidentiality is still a great concern for people with AIDS. Even Tremblay, who is glad to tell her story, does not want her real name published.

Tremblay's story is also important, Nosella says, because she does not fit the stereotypical view of an AIDS patient.

"She has brought to light the reality that HIV does not discriminate, that it affects everyone regardless of income, race, religion, sexual orientation and relationship status," Nosella says.

You see, Tremblay did not use drugs, did not share needles. She did not have multiple sexual partners. She had been in a monogamous heterosexual relationship for years.

How did she get AIDS, then?

"Unprotected sex," she says matter-of-factly, without embarrassment or self-pity.

"I had my tubes tied, so I didn't worry about getting pregnant or wearing condoms, I just figured I was safe. I had been in the relationship for more than a year."

That's it. Unprotected sex. As hokey as it may sound, Tremblay's story could be anybody's story.

The Queen of Christmas

Tremblay was 40 that December five years ago. She had no children, but she had a boyfriend and family nearby. Christmas was the usual whirlwind of buying presents, baking and decorating.

"I was always the queen of Christmas . . . I lived around Christmas. I still do, but for different reasons. It took me two days to decorate my Christmas tree, and I always used at least seven colours."

She made cookies and bars for the youngsters, and blender drinks for the adults.

"Oh, I put the umbrellas in and everything," Tremblay laughs. "Ask my family; Christmas didn't start until I got there."

But this season, she felt a little more tired than usual.

Things would soon get worse. After the holidays, for reasons she won't discuss, Tremblay was let go from her job.

Tremblay's severance was less than half of her yearly salary. She wouldn't see a dime of it until May.

Meanwhile, her health rapidly declined. She became extremely anemic. She suffered what resembled strokes. The right side of her body would shut off, leaving her unable to walk, and unable to lift her arm. Her speech became slurred.

"That's when my real story started, in July 2003."

By July, Tremblay had lost 100 pounds and most of her hair. Still, nobody could tell her what was wrong.

A rheumatologist thought Tremblay might have systemic lupus. Like HIV/AIDS, lupus is a disease of the immune system. With lupus, the immune system betrays you, attacking your body's cells and tissue.

Tremblay was prescribed Prednisone. It's supposed to heal trauma to the body, but in some cases has been linked to changes in mood and personality.
"Here I thought that the CIA was in our basement listening to my telephone conversations," she said.

But Tremblay didn't mind. She described the state of her health as "something that was comfortable."

It wouldn't last.

"It was the end of November, 2003 I was really getting some major respiratory distress."

Her timing could not have been worse. It was the time that an unfamiliar and deadly infection known as SARS - severe acute respiratory syndrome - was showing up around the world, including Toronto. As a result, hospitals in London took extraordinary measures to protect patients. Staff would wear extra gloves and masks, and visitors were not permitted.

Gloria Aykroyd, program coordinator for London's Infectious Diseases Care Program, remembers it was a stressful time for patients. "We operate outside the hospital, so even our staff was not allowed in the hospital."

Finally, Tremblay was told she had Pneumocystis pneumonia.

Pneumocystis pneumonia (PCP) is one of the most common opportunistic infections in people with HIV. Symptoms include fever, persistent dry coughing, and chest pains.
"That's the first time that anybody ever asked me about an HIV test. Are you in a long-term relationship? Are you an IV drug user? Have you had a blood transfusion?"

"No, no, no," she told her doctors.

Tremblay had to wait three weeks for her tests to be checked and double-checked.

Finally, one Monday morning, in a hospital room as bland as the oatmeal they serve, Tremblay was told she was HIV positive.

"Mr. Dark and Handsome comes in," she says, laughing. "Yep, that's what I call him, it always gets a laugh in my speeches."

" 'I'm sorry to tell you,' he says, 'but you are HIV-positive.' "

"That day I spent on my own. The next day I had to tell my aunt, who had just cared for me for the last four months."

"I told four people in one day."

Before she was discharged from the hospital, she had one last question for Mr. Dark and Handsome: can I make it to New Years?

"Oh yes, Jill, I'm pretty sure you'll make it to spring."

"I was told to go home, get my affairs in order, and try to have a nice Christmas because it could be my last."

It was December 8, 2003.

Christmas that year came and went, as has every Christmas since, and the queen of Christmas is still alive and kicking.

It's a little more sombre than usual, but there's a special glow to a holiday you think may be your last, she says.