May 2, 2011
Artist, world-rocker (her speech at the 1992 Republican Convention broke the don’t-say-AIDS barrier), energetic educator, positive for 20 years.
June 5, 2011, marks 30 years since the first published accounts of what
became known as AIDS. For this anniversary, we asked 31 long-term
survivors who’ve appeared in POZ what
moves and sustains them and whether they think they’ll live to see a
cure. Why 31? One for each year, and one more for good luck.
What’s the most helpful thing anyone has said to you over your years living with HIV?
Not long after my 1991 diagnosis, my mother, who always wants to be helpful, said, “You know, you have a cousin who’s a doctor and works with AIDS.” I thanked her and dismissed the idea. As it turned out, my cousin is Michael Saag, MD, at the University of Alabama at Birmingham. He’s one of the leading HIV/AIDS researchers in the world, a brilliant and caring physician, and now the person on whom I most rely for my own treatment program. Moral: Listen to your mother.
By the way, another very wise person said to me, after I’d spoken at the 1992 Republican Convention, that I’d done a nice job, but “don’t get all caught up in the politics of this thing.” It was incredibly insightful, correct advice.
What change or development in your treatment for HIV has most affected your life—for better or worse?
Learning to listen to my doctor, and having a doctor who really listens to me. Because we communicate well, we do well.
What is your refuge from thinking about and dealing with your health?
Broadway musicals, especially anything that gives us the gift of Harvey Fierstein.
What has been your major economic challenge since testing positive?
I have a tendency to want to help—maybe “save”—anyone who’s HIV positive, and I feel guilty each time I can’t.
What one thing has most aided your survival, and how difficult is it to overcome stigma?
I had a hard transition into HIV meds. The initial mix of antiretrovirals and me was bad. Emotional support has always been important, but it was disproportionately important then. I think I stayed alive because of others, especially my children.
Stigma is tough. It isn’t like a knife that slashes through your throat; it’s more like someone rubbing sandpaper on your skin, constantly wearing off your resistance until you feel the terrible pain of it. Then comes the fury, hurt, rage. And it’s the stigma that gives rise to much of the fear that keeps people—especially women and youth—from being tested and from seeking treatment. Stigma kills.
Do you think there will be a cure in your lifetime—and if so, will you benefit from it?
“Think there will be a cure in my lifetime?” No. “Hope there will be a cure by morning?” Yes.
What advice would you give to someone newly diagnosed?
“No one else can, or should, take charge of your life. It’s your life—live it. Find a good doctor. She or he will help. Find people who are emotionally positive, upbeat, hopeful—they’ll help. Build relationships in which you are a respected person, a partner, not a doormat. Know that you now have a chance to start your life over on much better terms than you had before. The irony is, it’s true.”
to read this article as it
appeared in the June 2011 issue.
read more of our "30 Years of AIDS" coverage.
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