The recent articles, studies, stats and promises don’t mean a thing to Cynara Chapman-Dillon. All she knows is the “new lease on life” protease inhibitors did not work for her. And whatever the hotly promoted percentages are among media and medical professionals, she didn’t need Newsweek to tell her she might be one of the unlucky. “I had a pretty good idea when I woke up in the fetal position, unable to move, that I couldn’t take protease inhibitors,” she says.
A 44-year-old African-American who excelled as a medical-practice management consultant, Chapman-Dillon had overcome drug and spousal abuse, and was certain there were few battles she couldn’t win -- until AIDS. She learned she had HIV the month her husband Herbert died -- the same month she found out he had known he was positive since 1986.
At Herbert’s request, they had tested several times. “I assumed [he wanted to test] because we had done drugs in the ’70s,” Chapman-Dillon says. Her results were always negative, and Herbert said his were the same. After taking their last test in 1991, Herbert said he was fine, so Chapman-Dillon never went back for her results. “I just figured I was black and heterosexual, and AIDS was a white, gay, male thing.” It wasn’t until two years later when Herbert lay on his hospital deathbed that Chapman-Dillon first heard mention of AIDS. Even then he denied his doctor’s diagnosis.
After Herbert’s death, Chapman-Dillon went back to the clinic. “I told the director I needed to get another test and she said, ’For what?’” Chapman-Dillon recalls. “I said, ’AIDS,’ and she stared at me in shock.” Not only had the woman known Herbert’s status all along, says Chapman-Dillon, she knew the positive result of the test Chapman-Dillon had taken two years earlier but never checked. “The system knew I had AIDS two years before I did. I suddenly felt like a nonperson. A nonentity. Invisible.”
Facing medical bills and no job -- she lost her executive position when she came out as a PWA at work -- Chapman-Dillon says, “I was just waiting to die. I had read somewhere that black women diagnosed with AIDS die within 18 months. Every time I’d visit my mother, I’d go on a drinking binge and talk about killing myself.” Thanks to Mom, however, who Chapman-Dillon says “was there when all my friends ran south,” she was introduced to Robert, an HIV counselor. “I remember waking up at my mother’s from a hangover, and this good-looking man was standing over me, and I said, ’I’m ugly. Go away.’”
She married Robert in May 1996. For the first time in a long time, Chapman-Dillon felt she had a reason to live, though the fear of “how long” still remained. That’s when she found out about protease inhibitors. “We were very excited,” says Chapman-Dillon. “I got on the lottery, and I got on AZT and 3TC, so when the drugs did get released I could get them. I could see myself being around for another 15 years,” she says.
But the drugs didn’t cooperate with her plan. “It was a horror story,” Chapman-Dillon says. "For the first month I was out of it, and then if I did go out, I was like Regan in The Exorcist,“ she says, recalling lunch at one eatery where she projectile-vomited all over the patrons at the next table. But Chapman-Dillon kept forcing herself to take the Crixivan. ”It felt like I was drinking three gallons of gasoline and taking nine Quaaludes, but my viral load went from 37,777 to less than 500, and my doctors and the media said this was it -- the only problem was that I was almost dead."
Chapman-Dillon, whose viral load is back up to 13,000, isn’t taking any medications now. “I was sacrificing my quality of life,” she says. “I missed out on months of my family and a man I love. I don’t want to do that again.”
For now, she’s concentrating on the impending arrival of two grandkids and her new position as cochair and director of CHAMP, San Francisco’s latest cannabis buyers club. There she has unlimited access to the only drug she’s willing to take -- one she feels won’t kill her and credits with the return of 27 pounds previously lost to wasting. “Maybe there’s something else out there that could help me, but how much of my body do I have to destroy before I find it?” she asks. “I’ll take quality over quantity any day.”