To Beat AIDS, the Unbeatable Foe
That night, she went home and washed her boyfriend’s clothes; they’d been in a settled relationship and had been using condoms. “As soon as he came in the door, I said, ‘I’ve got something to tell you. I have HIV.’ He thought I was joking. And when it finally sank in, he said, ‘You bitch.’ And he took his clothes and left. If I knew he was going to leave, he would have left with dirty laundry.” She was 24.
Rae called a number of ex-boyfriends. Only one phoned back to say he’d tested negative. “Everybody else was like, ‘Wasn’t me. Talk to you.’” The Red Cross counselor had told her about their HIV study with the National Institutes of Health, and though it was mostly on men, she enrolled, going in periodically to be monitored, which was all anyone could do at the time. Based on her T cell count then, she figured she’d been infected in 1983.
Rae tried to shove past by whom, and focused on her career. She kept her illness a secret: “Those first six years, I didn’t read one article on HIV. I didn’t watch one TV special. And when my buppie friends sat around and cracked jokes about AIDS, I sat there and laughed. I was not prepared to jeopardize all my hard work because of HIV.” When Jackson ran again, in 1988, she was his national youth director, mobilizing students across the country, becoming so close to the reverend and his family that she moved in with them for almost five years. When he didn’t win, she campaign-hopped, working at one point for Mike Dukakis, at another for Carol Moseley Braun, the first African-American woman in the U.S. Senate. She went back to school and was two classes short of getting her master’s when she made the transition to AIDS.
Unlike Sharon, Rae went on the first drug she could, AZT, though it made her nauseous and tired. Then, in 1992, just as she started having her first real symptoms—back-to-back yeast infections and staggering exhaustion—she got the call she’d been waiting a whole career for: The Clinton-Gore campaign was picking up Jackson people. “And I was way too tired to keep up the 14-hour days required to do advance work,” Rae says heavily. “Clinton took all my friends to the White House. I had to say no.”
Instead, she got a job working at Physicians for a National Health Program, organizing doctors around healthcare reform. But she continued to decline as the virus literally consumed her, wasting her body from size 12 to 6 in a matter of months. Rae says, “I felt like I was dying.”
And she was, according to Mardge Cohen, MD, who took over her care at Chicago’s public Cook County Hospital, now called John H. Stroger Jr. Hospital. “She had no T cells. She had nothing.”
Rae interrupts herself to fish around her purse, suddenly remembering she’s forgotten to take her meds—10 pills plus Fuzeon, which she has to dilute and inject. It’s a last-ditch drug for patients who have become resistant to other available medication and are in what’s called deep salvage. The twice-daily shots are so painful and cause such huge welts that doctors prescribe it only when there’s nothing left to lose. Rae is aware of that. “If you’re on this,” she says mixing up the solution, “you ain’t got no place to go at all.”
In the early '90s, severe wasting was AIDS’ macabre signature, and friends started asking Rae what the deal was. She realized the secret was killing her faster than the virus. So she started telling one circle of people, then another. Before she could come out to her political friends, she knew she had to get honest with Jesse Jackson.