Once Rae went on medication again, her labs improved. Finally the new drug, Crixivan, came, and she didn’t feel sick on it. Her health rebounded amazingly. And as it did, she says, “Kenny stopped speaking to me. All his validation was wrapped into watching me die.” Since they’ve divorced, she’s had to depend on friends, “which is tricky,” she says. “It’s not that they don’t love you, but it’s like, ‘Okay, what do you need now, girl?’ If I had to say what scares me the most, it’s the fact that I have no family and my support system is not as strong as I need it to be.” She could have used help, for example, the time she was unable to walk for eight weeks due to severe nerve pain after Georgia died, and twice when monster herpes sores on her vulva and rectum (“Oh God, the most embarrassing thing on the planet”) sent her to the hospital. “AIDS complicates everything else I have,” she says. “It never stops.”
Living in Chicago with two toy poodles, Rae is lonely. “In the 20 years I’ve known my HIV status,” she says, “I’ve never had a man say no.” But her last relationship ended two and a half years ago, when she discovered that the guy she thought was “wonderful” had a 28-year-old on the side (the woman got an earful from Rae about getting tested).
Still, she charges on. Busily writing her memoir, she trains hard—an hour of high-impact cardio five or six days a week plus three hours of lifting weights when she can make it—and watches her diet. And she believes in psychotherapy—"something the African-American community shuns”—which has helped her come to grips with her circumstances, including the blame. “I’ve had to work through my own culpability in my infection,” she says, “to find the thin line where I don’t beat myself up because of it but am able to say, ‘Okay, it is what it is. This is what you did, and it left you with HIV. Get over yourself.’ On my 45th birthday I said, ‘Rae, you’re forgiven. You did the best you could with what you knew.’ And what I understand finally is, when you know better, you do better.”
Rae fills a syringe with Fuzeon. As an effect of the medications, or possibly of the disease itself—scientists aren’t sure—all her fat has redistributed to the top of her body as if blimped upward with helium, creating an AIDS “buffalo hump” and padding out her strikingly high cheekbones. (“When it first happened, I was so depressed,” she says, poising the needle.) She decides to inject it in her minimized thigh, even though it will be painful, because her stomach is covered with welts. As she pulls up her shirt to show me, I see her butterfly tattoo, an inky sigh to lost freedom and the cue for a whole other story about how one South Side parlor refused to serve her because of her HIV, and she sued them for discrimination. And won.
Cohen describes the salvage regimen that Rae is on as “pretty intense—sort of a wipeout in itself,” but says, “she’s doing phenomenally well. Fantastically.” Her T cells are up to 449 and her viral load is undetectable–the most dramatic results Rae has ever had.
We Hear You!