It hasn’t been easy—or pretty. One of them has to inject herself in the stomach twice a day. The other came so close to dying that her father arranged—and paid for—her funeral. But Rae Lewis-Thornton and Sharon Lund, who were both infected with AIDS in 1983, when the disease was a virtual death sentence, are still here, still fighting, still working to help other women (now a quarter of all new cases) avoid their fate. And they have something to teach all of us about the art, craft, and sheer cussedness of hanging in.
She must be dead, Sharon Lund. I interviewed her—when, 1992? She’d already been HIV positive for nine years. Last time we talked, that virus was diabolically bungee jumping her in and out of her grave. The woman had three T cells, for God’s sake.
So when the phone rings and a woman says, “Hi, it’s Sharon Lund,” my thoughts start splashing around in a mad, frantic backstroke until I finally manage: “Where are you?”
“I’m living in San Diego...it’s beautiful.” She practically sings it in that upbeat, holistic-healer voice of hers, as I try to wrap my mind around the living part.
“And your health?”
“Never been better,” she tra-la-las.
“Are you living alone?” (Again, the living.)
Yes, but actually, there’s someone in her life, a younger man. ... And she’s written a book, her daughter’s great, the two of them are coming to New York...
At the time I wrote about Sharon in 1992, women made up 14 percent of Americans with AIDS, most casualties of IV drug use. Today, according to the latest statistics, women account for more than a quarter of all new HIV/AIDS cases; four out of five of them from plain old sex.
Very few female patients have been at it as long as Sharon, who was infected at the beginning of the epidemic, when there wasn’t a single drug available and AIDS meant dying awfully and soon. As in: You could probably count the years on one hand. After hearing from Sharon, however, I met another long-term survivor, Rae Lewis-Thornton, who figured out she’s been HIV positive since 1983. Both women—one white, one black—were blessed with the kind of looks that can make a man forget how to tie his oxfords and an unrelenting strength drawn, perhaps, from the fact that when they learned they had the disease, they’d already made it through worse. That grit has enabled them to hold themselves up through the worst of pain and social stigma, even to stare death in the face and say, “Not now, sorry: I’ve got other plans.”
AIDS experts will tell you that women like Sharon and Rae, by participating in studies and speaking out publicly, have brightened the prognosis for the newly infected. But most of all, these two are heroes for fighting what was thought to be unfightable: They’re models of resilience, whatever the difficulty might be.
Six weeks later she was dead, Dan Rather’s voice trundled in on his 1986 CBS News special AIDS Hits Home.
Cut to: a man’s profile, obscured for anonymity—the late suburbanite’s ex-husband. As the tape rolled, he calmly admitted that she had no idea he was bisexual when he married her. Clearly she never imagined he could give her AIDS.
“Do you feel in some way as if you murdered your wife?” the interviewer asked uncomfortably.
“No,” the man said with eerie confidence.
Rather’s 1986 report was a wake-up call for many women watching: a husband on the down-low, not that we called it that then—the whole thing a chilling reminder of how you could get AIDS from someone you thought was totally safe. For one viewer, though, the program was a death sentence.
Sharon Lund, a soft-spoken single mother in Los Angeles, was watching because her parents had taped it for her. They knew she worked with AIDS patients and brought the video when they visited over Christmas. With everyone settled on the couch, a fire going, the tree all festively lit, Sharon didn’t pay much attention until the man in profile came on, and then she started screaming.
“It’s Bill, it’s Bill,” she shrieked. Her whole body shaking uncontrollably, she yanked the tape out of the machine before the program finished and scrambled into the bedroom. There she grabbed the phone and dialed Bill’s number. She had been married to him after the frail woman. “Is it true you have AIDS?” she asked hysterically when he picked up.
By the time Sharon saw that CBS special, she was 37 and a veteran of tough times. Her two brothers died five years apart, both at age 23—Tommy in a motorcycle accident, Raymond from a heroin overdose. She’d been hospitalized with anorexia, lived (barely) through two suicide attempts. And her self-worth had been raked over by a childhood of abuse that started at age 3 and ended when she was 12, only because her grandfather, who’d been raping her, died. “And I felt responsible,” says Sharon, “because I’d been praying for his death.”
When she went into therapy as a young adult and told her dad she’d been molested all those years by his father, he turned livid. “I was so upset over it,” says Tom Clark, a former Navy captain who ran a ship-inspection business in Seattle. “If he hadn’t already passed away, I’d probably have shot him.”
The abuse left Sharon uncomfortable about getting physically intimate. Of her first husband, whom she married at 19, she says, “He’s a wonderful man, but every time we had sex I screamed inside, became numb, and wanted to die.” Three years before they split, they had a daughter, Jeaneen, who would become the reason Sharon fights to this day so fiercely for her life.
She had long been divorced when she attended an EST seminar in 1983 and met a new man—"Six-foot-two, silvery hair, a very nice-looking guy. We sat and we talked for a half hour and then he said, ‘Can I call you?’” His name was Bill Geremesz, he managed the Rose Bowl Stadium in Pasadena, and he never tried to get her clothes off. “He doesn’t like sex? I really like this guy; heck, this is perfect,” she laughs, remembering. After six months, when he asked her to marry him, Sharon thought, "This is God-sent—thank you, thank you."
The couple was on their way to walk down the “aisle” at the Rose Bowl when he turned to her in the car and said, “You know what? You’re ugly. I don’t know why I’m marrying you.” All dressed up in her wedding gown, she sat there shocked, marooned, and in tears. “Don’t you start crying at me,” he snapped. So Sharon gathered herself and, almost in a trance, made her way onto the field with him. “As I’m walking out, it was like a thousand voices shouted out, 'Don’t marry him,'" she recalls. “And I got to the 50-yard line and I said, ‘I do.’”
That night would be their first time in bed together. “When we get to the hotel, I go into the bathroom and I put on a negligee,” she says. “It was lavender satin and the V came down to my belly button so it exposed my breasts. And I come out and he’s sleeping. I wake him up with kisses, and he looks at me and says, ‘What are you, some kind of a whore? You look like a tramp. Get the hell out of here.’ I just lost it. I was crying and crying and crying.”
After spending most of the night in the hotel lobby, she says, “the next morning we went home, and he acted like everything was normal. From then on, I could not do anything right.”
Sharon left after four months and went to Hawaii, where her parents were living. “He called me every day and he said, ‘I’m sorry; we’ll go to therapy.’ 'Hey,' I thought, ‘"therapy"—that’s a good word. We’ll make it work.' So I said, ‘Okay, okay, I’ll come home.’ I got to the airport, and he wasn’t there. And I called him and said into the message machine, ‘Bill’—he didn’t pick up. Call him again—'Bill, Bill’—he finally picks up the phone and says, ‘Don’t bother coming home.’ I said, ‘What do you mean? I’m at the airport.’ He said, ‘Don’t bother coming home.’”
It turned out that Pat, his ex-wife—the woman on the AIDS special—had moved back in.
In December 1986, when Sharon saw the special, she and Bill had been divorced for two and a half years. On the phone that night, he flatly denied that he was the man on the show. But her instincts told her otherwise. She went to an anonymous test site, and the results were positive. She and Bill had sex only three times. (As he was dying in 1989, he called to admit he’d infected her. He hadn’t told her about his HIV status, he explained, because he’d needed to marry her in order to get custody of his kids.)
Anger doesn’t suit Sharon; she doesn’t like to put her immune system, weakened as it is, through the stress of it. From the get-go, she took a holistic and at times medically controversial path, using meditation to guide her treatment and visualization to help her immune system fight the virus. When AZT, the first antiretroviral drug for the treatment of HIV (it interferes with the virus’s replicating process), was approved in 1987, she was told to get on it fast—if not, she would have only six months to live. A person with a healthy immune system generally has 500 to 1,500 CD4 cells (also called T cells), the “generals of our defense system,” as one doctor puts it—but HIV takes them out. When the count drops below 200, the diagnosis shifts to AIDS and drugs are prescribed. Sharon refused, convinced she’d be better off without putting toxins into her system. Jeaneen changed the sheets as her mother soaked them with night sweats and cleaned up the diarrhea when she couldn’t make it to the bathroom. “People freaked out once they found out she was infected,” Jeaneen remembers, now 32 and a professional photographer. “They didn’t want to have anything to do with her.” That didn’t stop Sharon.
In 1990, she started the Women’s HIV/AIDS Support Group in Los Angeles. “One woman showed up,” she says. “I thought, 'There’s got to be more out there.' So I changed the name to Women Faced with Life-Challenging Illnesses, and more started coming.” With Jeaneen volunteering as a teen HIV peer educator, Sharon became increasingly active. In 1992 she testified before the Centers for Disease Control and Prevention to argue that women-specific conditions, such as cervical cancer, be included in the diagnostic criteria associated with AIDS, and the CDC issued revised guidelines in 1993. Until then, there had been no official acknowledgment that the disease can affect men and women differently. She also continued her work with AIDS patients, teaching them alternative healing techniques, and as an ordained metaphysical minister, performing many of their funerals. “These were absolutely the most compassionate, loving men that I’d ever met, and here they were, down to 100 pounds with KS [Kaposi’s sarcoma, a cancer that causes purplish lesions] all over their body. Then in ‘93 we started seeing women die. Out of those who started right after me, I know only one who has survived.”
In 1994, depleted by grief, she moved to the red rocks of Kayenta, a starkly serene suburb of St. George, Utah. Sharon felt at peace there until she was felled by a one-two punch of PCP (pneumocystis carinii pneumonia) followed by MAC (mycobacterium avium complex), both potentially deadly infections common to AIDS patients. Her doctor, Teresa Bowers, MD, started to worry that Sharon wasn’t going to make it and summoned the family.
“After seeing her at the hospital,” says her father, “I went right to the funeral home and made arrangements. I paid for the whole thing. That’s how bad she was.” Then he called a priest.
“What are you doing here?” Sharon asked the clergyman when he showed up the next day.
“Well, do you want your last rites?”
“No,” Sharon said firmly. “I don’t want my last rites.”
But in truth, she had lost her will to live. The only thing she needed to do was to see Jeaneen, then 21, one more time. Her daughter flew from Los Angeles to the hospital as fast as she could.
“When I got there, I just stood in the doorway and thought, 'Who is that?'" says Jeaneen. “My mom—I couldn’t recognize her. I mean, she was probably 85, maybe 80 pounds, and she was lying there and I was—and it—seeing that was so heartbreaking”—she stops, apologizing, unable to hold her tears back even now. “It was such a shock to me that I couldn’t even move.
“And then I went in there and jumped into the bed with her and held her.”
Sharon says that’s why she’s alive. “I’ll never forget how wonderful it was to have her warm body next to me, and she was just saying, ‘Mom, I love you. I want you to get well so we can go home and I can take care of you.’”
The next morning, Jeaneen left the hospital briefly to take a shower. At that point, as Sharon writes in her 2006 book, Sacred Living, Sacred Dying, she had a near-death experience during which she was offered the option of living or continuing on into the tunnel of light, and she made the choice to come back to her daughter. By the time Jeaneen returned, Sharon knew she’d be home before long.
Her family, her doctors, everyone was stunned that AIDS didn’t take her then. Bowers, who’s now at Greenville Memorial Hospital in South Carolina, says, “I’ve never seen anybody who wants to live more than Sharon.” She had only three T cells.
“Yeah, I call them Hope, Love, and Laughter,” Sharon half jokes. “They’re always with me.”
Living back in Southern California now, Sharon has a T cell count of 205, barely above the AIDS line, “but at least out of the danger zone,” she says optimistically. The best news is that the viral load in her blood is undetectable, an indication that the drug cocktail she’s on is suppressing the HIV. (Imagine a train heading toward a cliff: The T cell count tells you how far away you are from death by AIDS; the viral load, how fast you’re going, explains Monica Gandhi, MD, an assistant professor in the division of infectious diseases at the University of California, San Francisco.) Hoping at some point to get off medication, Sharon follows a regimen that includes acupuncture, visualization, meditation, and stress reduction—all in an effort to increase her energy level so she can go out on the talk circuit again to share her story.
“So many factors go into rebuilding an immune system,” says Susan Wellborn, a holistic nurse practitioner at the Center for Special Immunology in Fountain Valley who cares for Sharon now and is amazed by her spirit. “I’ve been in this business long enough to see that the patients who do well are not depending just on medicine but are taking care of their whole being.”
In her characteristic “bright-side only” way, Sharon will tell you how AIDS has been a blessing, making her who she is today—and with her 58th birthday on November 30, she couldn’t be luckier. Hard at work on her next book, she’s finally found herself in a loving relationship with a man she met almost seven years ago. He ran the copy shop where she went to do her xeroxing. “The first thing that moved when I saw her,” says Hector Parra, “was my heart.”
On their first date, before they went out, she tried to sit him down at her house: “I have to tell you something.”
“I don’t want to know about your past,” he said.
“You have to know my past,” she insisted. “I’m not going out with you if you don’t let me tell you about it, Hector.”
They wrangled back and forth like this until she finally said it: She had AIDS.
All he replied was, “Oh, okay.”
“To me it’s never been an issue,” he says simply. “If I was in love then, I’m in love to the 10th power right now.”
On a visit to New York from Chicago, where she lives, Rae Lewis-Thornton sits across the desk in a Manhattan office, smartly dressed in a fine-gauge wool pantsuit, and pulls out a swatch of fake hair from her purse. She’s explaining how the elegant gray-accented mane that frames her face has just been installed by “the best” hair weaver in town. At 45, Rae doesn’t mind exposing such privacies: She’s used to hanging out the most intimate details of her life like jaunty bits of lingerie on a clothesline for all to see.
Verbally speed dialing through her résumé—magna cum laude from Northeastern Illinois University, national youth director of Jesse Jackson’s presidential campaign—Rae periodically brushes the new long strands of hair off her face with the gesture of a woman who knows the power of her appeal. In the same sweep of hand she reveals a Rolex and a pair of Van Cleef & Arpels onyx earrings, which match her necklace, as well as a bracelet that leads the eye to the other jewelry on that wrist—a beloved antique diamond piece and the silver and gold bangle she calls her “until there’s a cure for AIDS” bracelet.
Rae attributes her rapid-fire attention—which served her well as a young hot politico working presidential campaigns—to the Gemini in her. It could also be the legacy of starting life in a womb full of heroin. “My mom’s white and my dad’s black. They were two junkies. They hooked up together,” she says, knocking back the information like a straight-up shot of whiskey. “My paternal grandfather took me from them.”
Her story unfolds like a made-for-TV movie. When she was 6, her grandfather, the one steadying force in her early life, died, leaving her to the care of his third wife, Georgia, “the mama who raised me,” as Rae calls her. “She told me nobody wanted me, ‘Not even your white grandmama, and I’m stuck with your ass.’” Georgia, who worked as a maid, was a functional alcoholic, according to Rae. “My mother cooked a dinner every evening. My mother never staggered. My mother never slurred. But she beat me when the sun was shining, and she beat me when the sun wasn’t shining. Typically it was with an extension cord but it could have been a camera, whatever was close. And my mother was dark, so I was always ‘a white bitch.’ We never watched TV together, we never had family outings. It was a very troubled life.”
At first the two of them lived on Chicago’s South Side with a man who had seven children. One of the sons was about 19. “I was 9 or 10, and he abused me,” Rae says. “I’d felt rejected my entire childhood, and then my stepbrother showed me attention. It started out slowly with sitting and watching TV, and it escalated to touching, then touching me with my panties to the side, and then eventually penetration. It was so normal that I thought this was something that I was doing. And I understood it as I’m fast. I was never told that people aren’t supposed to be touching you at this age.
“It wasn’t until I was 31 in a therapist’s office and she said, ‘How does a 9-year-old have sex with a 19-year-old, Rae?’ I said, ‘Oh, because I’ve been a sexual person my whole life,’ and she said, ‘No.’ And I cried for two weeks. It was like, 'Oh my God, I wasn’t participating.'”
In the riptide of family bonds generated by each of Georgia’s men, Rae got caught in episodic abuse. By the time she was in seventh grade, she’d been molested by three different people, she says, at which point Georgia married a man “who never raped me, but he’d hem me in corners, push me up against the wall, kiss me, rub his hands all over my body parts, grab my breasts.” When she told her mother, she says, “her explanation was, he wouldn’t want to be with me if I wasn’t a whore. He left in August, and she put me out in October. I had just started my senior year in high school.”
The one upside to that last marriage for Rae was that they’d moved to the suburb of Evanston, which had a good school. She ended up finding a place to live with two of her former stepsisters, commuting an hour and a half each day to class, running to her job at a clothing store, and then hightailing it to her second gig, at McDonald’s.
Sex with the right men, she realized quickly, could make things easier. In and out of relationships for the next few years, “trying to get validated, trying to find love,” she turned her overachieving drive to becoming a sex goddess. Not that she was promiscuous; just choosy. “For me it was the richer and older, the better,” says Rae wryly. “Got to pay rent. And you’re pretty. With long hair. And you’re high yellow. So you get your winter coat. And that’s what I did. You screen very carefully: six-figure income, Giorgio Armani suit, Mercedes required.”
The move to Evanston exposed Rae to a new world of literature and arts and to black history and African-Americans with PhDs. She got into Southern Illinois University, Carbondale, which is where she first heard Jesse Jackson speak. It was at church on Easter Sunday, and she knew right then that she had to get politically involved. On campus she became the queen of activist causes, then quit school after a year to join Jackson’s first presidential campaign, in 1984.
Piggybacking from one political candidate or organization to the next, in 1987 she found herself working for the peace action group SANE in Washington, D.C. That January, there was a train accident, and she organized a blood drive. The Red Cross had started screening for HIV, and after donating, Rae was supposed to call in to make sure everything was okay with her blood, but she threw the number away. “I knew AIDS,” she says. “AIDS was white. AIDS was gay. AIDS was IV drug abuse. It wasn’t me.”
In March she got a letter. It was from the Red Cross; she had to come in. She hopped into a taxi and sat down with a counselor. “The entire meeting took five minutes,” says Rae. “I got up and went back to work. I said to myself, ‘This is one more thing in my life. I can handle HIV. Just don’t ever let me get AIDS.’”
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.
“Reverend, I got to talk to you,” Rae said, standing in his kitchen one day.
“What’s up? You pregnant?” he asked.
“I wish I was,” she said, and then the truth started spilling out. After a few minutes, he stopped her.
“I loved you then,” he said in his fashion, because he didn’t like a lot of small talk, “and I love you now.”
Jackson remembers that moment in his kitchen. “I was astonished,” he says on the phone. “And I didn’t know what it meant; I didn’t know what the options were. At that time it was a death sentence for most people.” Speaking fondly of Rae, he continues. “And so then she began this awesome journey to use her body and her experience as a living sacrifice, as a model. She declared the sickness. And she also declared war on AIDS. And no one has been a more informed advocate.”
Rae started going into high schools to tell her story. “Sometimes I’d ask, ‘How many of you guys would have sex with me?’ They’d all raise their hands. And that’s when the work would start: ‘How did you get it, what did you do?’” With her telegenic looks and preacherlike delivery making her a popular speaker, she began traveling around the country taking on bigger engagements, appearing on TV and in magazines, determined to save others from her fate. “I heard her speak when I was a sophomore in high school, and it changed my life,” says Luke Burke, now 27 and a senior coordinator for MTV news. “She doesn’t sugarcoat anything. Point-blank, she scared me. When I casual date now, I don’t generally have sex. If I do, it’s definitely safe—it’s a big deal to me.”
As far as sex went for Rae, after being diagnosed, she didn’t date for at least a year. “I was young, attractive, and had the worst disease of my century,” she says. “And because of my past, I was not prepared for any more rejection.” Deciding she was morally bound to reveal her status, she became much more careful; she had to really like a man, and condoms were required 100 percent of the time. When she met Kenny Thornton, she thought he fit the bill. Jackson married them in 1994.
With Kenny—a man around her age, way short of rich, forget the Armani or Mercedes—Rae broke all her rules. “I was so afraid to die alone. And I had no family,” she admits. But Kenny was an ace caregiver, which became crucial when she was on the road, because she suffered three bouts of PCP, going now from size 6 to 0, the virus taking her down to the bone. “She was as sick as you get,” says Cohen, who became a principal investigator on the largest study of women and AIDS at the NIH—the Women’s Interagency HIV Study (WIHS)—which Rae joined at the start. (One of its findings would be that a third of HIV-positive subjects, like her and Sharon, had been sexually abused as children, with twice as many suffering domestic abuse—a continuum of violence that, the researchers suggest, may increase the likelihood of behaviors that lead to infection.)
Not surrendering to the disease was all Rae could think about. “Even on bad days, I’d just get my butt up, comb my hair, put some lipstick on, and pop on some earrings, because a diva never leaves the house without earrings. There were no illusions that AIDS had control of my body. I couldn’t give it my spirit.” Still she knew her end was near. “I was literally keeping a breakneck schedule trying to speak to everybody I could before I died.”
But 1996 became a swing year for AIDS patients like Rae who’d been hanging on by a few tattered T cells, planning their funerals. Suddenly, with a new class of medications—protease inhibitors—on the market, drug cocktails became the first regimens that were really effective. “We now had three classes of medications, so we could hit the virus lots of different ways,” says Cohen. “That’s when we saw real change. Instead of just keeping people bumping around for a while, the drugs helped them start living and working again.”
That year, New York City therapist Robert Levithan remembers, “there was this kind of shock. People would come into my office saying, ‘I’ve been waiting to die’—they’d gone into debt, sold their life insurance, lived out all their dreams—and nothing was organized around ‘I could be here in 20 years.’ For some, the idea of readjusting again seemed harder than dying.” Levithan, who counsels HIV patients privately and at the nonprofit Friends in Deed, has been a patient himself since the early '80s, and was near death in the mid-'90s when he won a lottery and got early access to Crixivan, one of the first protease inhibitors. “I looked at it and went, ‘That’s what I’ve been waiting for,’” he says, today in good health.
For Rae, the ride was rougher. Just out of the hospital with her third round of PCP when she went on a protease inhibitor called ritonavir, she got so sick—”I’m talking about getting up at 5 in the morning and sitting in the bathroom bent over,” she says—at one point, she called Cohen and announced she was quitting the drugs. “I had decided that the quality of my life was more important than how long I could live.” A few weeks later when she went in for an appointment, her labs were bleak. Eight T cells. Cohen said, “You have to get back on the medicine.”
Rae held fast; she was done. Cohen, usually matter-of-fact, went ballistic.
“You have to give me some more time. You have to do this for me,” the doctor screamed. “There’s another medicine coming soon and they say the side effects are not as bad. You can’t quit now.” Rae had never seen her like this before. Through all their time together, they had avoided discussing the possibility of her death, but she could now hear it in her doctor’s voice, and that got to her. She agreed to go back on ritonavir for a couple of weeks.
“Back then, Rae was at that brink where many people as immunocompromised as she was didn’t make it,” says Cohen, who after 31 years at Cook County left this summer to focus on the WIHS research and her HIV project in Rwanda, Women’s Equity in Access to Care and Treatment (WE-ACTx). “We’d just be hoping each time a regimen was approved that it would help her get to the next place so we didn’t lose her. Because we lost so many people. She knows how lucky she was to make it through that period.”
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.
The fact that she’s developed resistance to so many of the drug options is the curse she bears for being a guinea pig. “HIV mutates very frequently, and if you just use one or two of the drugs, the virus can overcome them fairly quickly,” says Hiroyu Hatano, MD, an assistant professor of medicine at UCSF, who recently published a study on the topic. “And Rae took every regimen that came down the pike,” says Cohen. “At first we gave people one drug at a time—we didn’t have any other options. Now we give newly infected patients several drugs all together in one force, which has a much stronger effect and causes a lot less resistance.”
And there are new medications. In fact, Hatano believes that 2007 may be comparable to 1996 in seismically shifting the course of AIDS. On August 6, as Rae was injecting her drug of last resort, the FDA approved maraviroc, a CCR5 inhibitor, which represents the first new class of oral HIV drugs in more than a decade. Rather than fighting HIV inside the T cells, maraviroc thwarts the virus from even entering uninfected cells by blocking one of the main entryways. “So it’s a whole different mechanism,” says Hatano. Another novel class of drugs called integrase inhibitors hovers on the brink of approval, as does a medication called etravirine, “which is exciting because it’s effective against some viruses that have become resistant to the existing drugs in its class,” she says.
Meanwhile, there’s a lot of buzz around a group of patients called elite controllers, who have been infected with HIV for years without ever getting sick. “We thought these people were rare as hen’s teeth. But now we realize that about one in 300 patients ends up like this,” says Bruce Walker, MD, director of the Partners AIDS Research Center at Massachusetts General Hospital and a professor of medicine at Harvard, who is launching a multimillion-dollar study (EliteControllers.org) to find out what’s unique about their immune systems that could be applied to all patients—maybe even as a vaccine. “You want goose bumps?” he asks. “I look across the table at one of these people and feel like the answer is sitting right there in my office.”
As it is, AIDS specialists say, with 22 drugs available, today’s outlook for patients is so much better, and longer, than 24 years ago when Rae and Sharon were infected—to the point where, if a newly diagnosed woman comes into Monica Gandhi’s clinic at UCSF asking how long she has left, the doctor is able to tell her, “We’re going to try for a normal life span.”
Whether any of the research or new drugs will keep Rae or Sharon alive is a question neither chooses to dwell on. They have too much work to do to die anytime soon. With more and more women testing positive for HIV, their mission has intensified. They know they are in a unique position to change lives, and that in itself keeps them going. “I do it,” says Rae, “so that my story will never become your story. I do it so you’ll never have to walk in my shoes.”
Printed from Oprah.com on Tuesday, June 18, 2013
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