May 2, 2011
SMART starter (founder, SMART University, New York City), positive for 16 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?
Paraphrased from my good friend and mentor, John Falkenberg: “Getting correct treatment information is critical for making informed decisions about your health and care.”
What change or development in your treatment for HIV has most affected your life—for better or worse?
For the better: I am alive. Side effects and getting old are challenges at times, but at least I’m alive to deal with them.
What is your refuge from thinking about and dealing with your health?
Easy: Walking my dogs! I love going for long walks with my Italian greyhound, Ollie, and carrying my little Chihuahua, Mork. Walking in my special places—beautiful Central Park, along the East River and the Hudson—clears my head and lets me feel better mentally and physically. My extra special place is Wards Island. It is surrounded by water and I could walk there on a footbridge across the East River, though I’m kind of bummed out because the bridge is closed for another year for repairs.
What has been your major economic challenge since testing positive?
Keeping the doors open and programs running for my organization, SMART University [Sisterhood Mobilized for AIDS/HIV Research & Treatment], which I cofounded with a group of women living with or affected by HIV/AIDS in 1998. That was three years after I tested positive. In recent years, it has been become more and more of a challenge to keep it going. But as a women’s organization, we are creative and resourceful, so we have been able to persevere through hard times when we’ve had to make do with little or nothing.
What one thing has most aided your survival, and how difficult is it to overcome stigma?
My kids have made me into a survivor and helped me speak out. Stigma can be overcome by those who are willing and able to speak out dealing with it head on. If I did not have my kids’ support all these years, I could not have been vocal. They have always been part of any decisions to speak out about being HIV positive. I really don’t care what anyone else thinks or cares about me. If they have a problem with me being HIV positive, that’s their problem.
Do you think there will be a cure in your lifetime—and if so, will you benefit from it?
Not sure if there will be a cure in my lifetime, but I do hope so—at least a microbicide product that would reduce transmission for women. I used to go to fountains in the park, toss a coin and wish for a cure. It’s been a while since I’ve done that. Maybe I gave up about that happening, and maybe I need to start wishing for it again.
Of course I would benefit from a cure! This living with HIV is not some kind of walk through the park, but I do the best that I can. I have a daughter, now 19, who was born with HIV, and I would give anything in the world for her to be cured.
What advice would you give to someone newly diagnosed?
Get as much support and information as you can to make the right decisions in taking care of your health. And that includes nutrition.
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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