The Living Daylights

Some people with HIV don't get sick for years and years and years. Their lives might contain the clues for the cure.

In 1990, the year after Peter died, the Clinic Study called Maples in. Maples had participated in the hep B study, and the researchers wanted permission to test his blood. When they did, the results were astonishing to him: He had been positive for going on 13 years. Learning that, Maples says, "was real strange. I didn't know what to do with the information."

But if Maples was still asymptomatic, the virus was slowly taking its toll. In 1990, he started taking AZT, the antiretroviral drug, and by 1992, his T cells fell below 200, which meant a diagnosis of AIDS. He left his job at the University of California and went on disability, very aware that he was fortunate to be provided for financially and in terms of medical insurance.

"I'm real, real fortunate in that respect," he says. "I'm very aware of it. I know I'm very much in the minority in that, but I'm very grateful."

Over the years, so many of Maples' friends have died of AIDS that he has stopped counting. "I sort of look at it like we're all in this together. I look at them as teachers. I have learned something from each one of them. And if they can die, I can do it too," he says. "I miss them terribly, but I just figure we're all in this together. It's just part of life at this stage of the game."

But at the same time, Maples says, he tries not to let AIDS get the upper hand. "I've always had great respect for the virus. However, I try not to have the virus or AIDS dominate my life. I try to live a quote-unquote normal life," he says. "Although that is getting a little more difficult. My health is not improving. But it's sort of a general attitude."

These days, approaching his 20th year with HIV, Maples has symptoms: Disseminated thrush, which is a yeast infection, has spread down his esophagus; he has chronic diarrhea from the bacteria cryptosporidium; and his body is reed-thin, evidence of AIDS wasting syndrome. In response, he has unleashed a battery of medicine, including Saquinavir, a protease inhibitor, which he says has dramatically decreased the amount of virus in his blood.

In addition, Maples takes weekly acupuncture sessions, and Chinese herbs. And he attends a support group -- as he has for the last nine years -- where he does meditation, guided imagery, and the laying on of hands. "Quite honestly I don't know if it's helpful or not," he says, "but it's comforting. It's very, very comforting."

In the nearly two decades that he's been HIV-positive, Maples says, he has seen improvements in medicine that give him hope. "I think in the last 10 years there have been great, great strides, and if I were going to have AIDS I'd much rather have it in 1996 than 1986. There's a much bigger arsenal out there."

And he has taken the time to travel, to buy things that he wants, to allow himself pleasure in his life. He is close to his family and to the lover who has been a "very, very important" part of his life for the last five years. "Awhile ago," Maples says, "I told myself this whole AIDS journey is one big adventure. You just have to be prepared for what's coming down the pike next."

Science, however, cannot -- or, in any case, does not -- quantify all of the reasons for long-term survival with HIV. There are other, less tangible factors as well, most of which have not been addressed by the empirical realm of Western medicine. But that doesn't mean people aren't talking about them -- and using them to change their lives for the better.

In 1993, at the Ninth International Conference on AIDS in Berlin, New York activist Aldyn McKean made a stir. For five years, McKean had been talking about long-term survival with HIV; finally, in Berlin, scientists and the media took note. In "Long-Term Survivors: A Report from the 'We Told You So' Conference," a layman's-eye view of the science and discussions aired at the conference, McKean spelled out some of the factors and categories of long-term living with HIV. In addition to the three factors generally acknowledged to be involved in long-term survival -- viral virulence, immune response, and genetic factors -- McKean's report listed six "other host characteristics," which included the gender and race of the HIV-infected individual, mode of infection, co-infections, access to health care and medication, behavioral factors, and psychosocial factors.

In particular, McKean's report singled out two not specifically medical factors longer-term survivors had in common: taking an active role in their own medical care, including establishing a relationship with a doctor they liked; and the ability to "realistically acknowledge life's challenges, grieving losses, not using denial as a coping strategy, reformulating their life view to maintain a positive outlook, remaining active with a set of goals to be accomplished, and maintaining social supports."

Certainly that's what Matthew Sharp believes. Sharp is the director of Healing Alternatives, the Market Street resource center that maintains one of the largest AIDS medical libraries in the country. Sharp has been positive since 1988, and he advises "to just keep an open mind. Don't be dogmatic about your treatment, and become an activist. All those things have kept me going."

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