Sitting comfortably in a rocking chair in the living-room of her Dartmouth, N.S., home, Janet Conners doesn’t look, at first, like someone who is dying. She speaks forcefully, always keeping close eye contact with her visitor. But as the conversation stretches, Conners begins to fade visibly. The coughing becomes more frequent and, at times, chokes off her words. It is only 10 a.m., but soon she will be back in bed, where she now spends much of her days, drained of energy by the AIDS that she feels certain will soon end her life. Conners has already seen the future: her husband, Randy, was a hemophiliac who contracted AIDS through a blood transfusion in 1986 and, unwittingly, passed on the virus to his wife. He died in 1994 at the age of 38. Conners is now 41, and when she thinks about what she might miss—seeing her teenage son married, playing with grandchildren— there is, she says, “an overwhelming rage that if I really let myself feel it, I would smash everything in this house. So I don’t let myself feel it—I’ve become very good at that.” She has also become very good at channelling anger into political action. After relentless lobbying by Conners and her late husband, the Nova Scotia government agreed in 1993 to financially compensate hemophiliacs infected with the HIV virus from tainted blood products—a precedent that was eventually followed by other provincial governments. Conners remains an outspoken critic of the Red Cross and its repeated attempts to limit the scope of the federal inquiry into the tainted blood scandal. But as her energies sag—and her cynicism about government grows—it becomes increasingly hard to keep up the battle. “What’s the big surprise?” was her immediate reaction to last week’s revelation that federal health officials had destroyed the written transcripts and tapes of the Canadian Blood Committee, which oversaw the blood system during the years that thousands of Canadians were infected with the AIDS virus or hepatitis C. “Nobody has taken any accountability through any of this.” She then adds, almost apologetically: “I didn’t use to be such a cynic. I used to believe in government. But it doesn’t even make me sad any more.” Conners could be forgiven if she has more immediate concerns on her mind. Over the past two months, she has added a new drug to the long list of medications that she takes daily. It is a protease inhibitor, widely touted by some as a breakthrough in extending the
lives of AIDS patients. But the sideeffects have proven devastating: she has developed hives, a swollen throat and a numbness that starts in her tongue and sometimes spreads to her entire face. Other problems include weight loss and frequent nausea. “There are days when the thought of cooking, or even eating, is just revolting,” she says.
Through it all, Conners tries to maintain as normal a home life as possible for her only child, Gus, 16.
But it isn’t easy. “Nobody has written a book yet on how to raise your kid while both parents are dying,” she notes. She finds herself engaging in serious discussions she might not normally have with a teenager—about relationships, honesty, justice and fairness. It is heavy stuff, but she adds that “he’s not going to have a lifetime of learning by example. I feel like I’m trying to cram in a lot
of mothering in the time I have left.” Despite her diminishing energies, Conners hopes to remain active in ferreting out the truth behind the blood scandal. She has watched too many other victims die to stop now. “For me,” she says, “continuing on and doing the work is the way I mourn for these people.”
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