May 2, 2011
Teddy bear-tender (creator of Dab the AIDS Bear Project), positive for 29 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?
The most helpful thing anyone has said to me about living with HIV was when Marty Delaney told me to live every day as if it were my last day. He told me not to let what others thought about me for having HIV or being an activist to stop my dreams and hopes.
What change or development in your treatment for HIV has most affected your life—for better or worse?
In 1994, my CD4 cell count was 4. I named my four CD4s after my two partners, one friend and my goddaughter, who had all lost their battle with HIV. And I would do visualization to the song “I Will Survive” by Gloria Gaynor. I was one of the “walking dead” because of HIV wasting and having just been through six months of treatment for non-Hodgkin’s lymphoma.
Then I entered the trials for the new class of drugs, protease inhibitors. It was the first time anyone with HIV truly had hope that we could live with HIV. Several months later, my CD4 count was back above 300. With the medications we have today to treat HIV, people can live indefinitely with HIV where for so many years there was little to no hope.
What is your refuge from thinking about and dealing with your health?
My refuge is helping others living with HIV. By going around the world with Dab the AIDS Bear and helping others, we receive so much love for members of our community.
It is working all year long to make sure we can bring hope and joy to children with HIV/AIDS with our holiday events called Teddy Bear Touchdowns. The best gift I receive every year is the hugs and “thank you’s” from the children at the events.
What has been your major economic challenge since testing positive?
My challenge has been living on Social Security and private disability while dealing with the expenses of a chronic illness like HIV. This is the reason so many of us worked with Senator Kennedy in the ’80s to get what became Ryan White funding approved in Washington, DC. Too many of my brothers and sisters living with HIV have to worry about housing, medications and other expenses associated with HIV, along with the burdens of everyday life.
Because of these challenges, the AIDS Drug Assistance Program (ADAP) waiting lists in our country are especially upsetting to long-term survivors like me. It is also why Dab the AIDS Bear and I work so hard to raise awareness about the waiting lists and other funding needs for people with HIV/AIDS at the state and national levels.
What one thing has most aided your survival, and how difficult is it to overcome stigma?
The thing that most aided my survival is the love and support of my family and friends. I come from a Southern, conservative, military and religious family. Luckily, I have always had the love and support of my immediate family, even though I know it has not been easy for them having a gay man who was one of the first diagnosed with HIV—when it was still called GRID (for Gay Related Immune Deficiency).
I have also been lucky to have the love and support of people living with HIV/AIDS around the world. Because of my work with Dab the AIDS Bear, I have had people both HIV positive and negative reach out to me from all corners of the world.
Do you think there will be a cure in your lifetime—and if so, will you benefit from it?
I do hope I live to see a cure. I was honored to be one of the extras on the movie Longtime Companion. There is a scene at the end of the movie where all your friends who died from complications from AIDS show back up on the beach. I still cry every time I watch it. Having known over 10,000 friends who have died from AIDS, it would be a dream come true to have all of them with me again. While I would benefit from the cure because I would no longer have to take medications every day, worry about the cost and the loss of more friends, the greatest gift a cure would give me is to know that no one else would have to die from AIDS.
What advice would you give to someone newly diagnosed?
I would advise them like Marty Delaney advised me: not to give up on their hopes and dreams. With the medications we have today to fight HIV, you can live a normal lifetime. Just follow your doctor’s orders, exercise, take your medications, stay away from alcohol, drugs and cigarettes and get enough rest. But most of all, remember, life is not a dress rehearsal. Live every day as it is it your last, and remember to tell those you care about that you love them.
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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