By Erin Sherbert
By Howard Cole
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By Leif Haven
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By Chris Roberts
By Kate Conger
At Healing Alternatives, people with HIV can browse the library, reading up on different treatments, choosing the one they believe is best for them. "It's sort of patient empowerment," Sharp says. "I think especially here in the Bay Area people are very individual about their decisions."
And that leads people in their own directions.
Sharp, for example, espouses protease inhibitors. "My T cells went from under 30 to 175," Sharp says. "It's very encouraging. It's sort of brought me back to being hopeful again."
But, he says, he has to look at the good numbers the same way he looks at the bad ones -- "I try to keep level about it. Obviously. It's a life-and-death thing."
Emilio Gonzales, on the other hand, has taken another route. Gonzales, who at 58 has been HIV-positive for 10 years, considered taking antiretrovirals years ago but decided against it. Instead, his health regimen includes acupuncture, Chinese herbs, and a kind of exercise called qigong, which is a healing form of tai chi. "It's regular exercise, it's easy to do, and it goes hand in hand with the other treatments I'm doing," says Gonzales, who leads a qigong class for people with HIV and has recently made a video about the exercises for the Immune Enhancement Project.
"There are people living even 20 years, very healthy lives, but number one you have to take charge of your own health care and make some difficult choices," Gonzales says. "You need support from your friends and to educate yourself and keep yourself current on what's coming down the pike."
And regardless of the findings of strict medical science, the connection between the body and the spirit is important for one simple reason: quality of life with HIV.
At the 10th International Conference on AIDS, activist, writer, and psychologist Andrew Velez hosted an evening session on long-term survivors named in honor of McKean, who had recently died. Velez, who has worked in the field of long-term survival for years, says that maintaining social connections -- a sense of community -- is very important for living with HIV, as are the thoughts a person has about having the virus.
"I think it has to be less about life and death and more about 'OK, I'm HIV-positive, what's next?' " Velez says. "You still have your choices. You have a choice to go on with your life in an affirmative way."
Basically, Velez says, what it comes down to is this: "The quality of life of someone who is HIV-positive -- who even becomes a long-term positive -- is inestimably improved by the approach that they control their lives. Even if they ultimately do not survive, the time they have is so much better than they would have had otherwise."
In 1991, furniture-maker and actor Mike Bender got some bad news from the Clinic Study in San Francisco. It wasn't so much that he was HIV-positive, or that he had had the virus for 10 years, ever since the heady days when he'd lived in a house on 18th Street in the Castro, with three floors of gay men and lesbians, a big extended family. The bad news was that he had a count of 100 T cells, an indication that his immune system had been eaten away by HIV disease.
"To tell you the honest truth, it was pretty horrifying," says Bender, looking out at the banana trees in his back yard. "At that time it was assumed that if you had that debilitated immune system that you had a few months left to live. I was perfectly healthy. I had just gotten back from a ski trip when I got the news. I had a really busy life, and the news and the statistics and my health were just total juxtapositions," he says. "The irony of it of course was I was healthy then, and I'm still healthy, and it's been a number of years."
Talking to Bender is a little like getting spiritual advice from a wisecracking old friend. Does it confound him that, 16 1/2 years into his HIV infection, his only symptom -- a low T-cell count -- means that he technically has AIDS? The CDC's AIDS definition includes everyone with T cells below 200, and Bender's count goes up and down around that margin.
"Officially, I guess, I have AIDS," he says. "Last month I didn't. Next month I may have." Living with that idea, he says, is something he's learned to do. "I sat in the chair and cried when I got the news of my T-cell count, and the fact that I was HIV-positive. After you cry, you're over it. I haven't cried about it since then."
Instead, he's made some changes in his life. "I stopped letting people upset me as much. I stopped deciding how much I think I should do at each point in my life, how much I think I should accomplish," he says. "It's like driving a car that eats tons of gas. When you're not having a gas crunch you don't think about it, but when gas is expensive, you get rid of some of the excess baggage. For me, it was the gas crunch. It just made me aware of where the energy was being wasted."