May 2, 2011
Positoid rock star, educator and author (My Pet Virus), POZ blogger, positive for 25 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?
I’ve had a lot of helpful advice over the years. I was diagnosed young—at age 11—in 1987. That same year, one of my uncles was heading overseas to study. He wrote in a notebook that I liked drawing in. The message was simple: “Don’t let the bastards get you down.”
What change or development in your treatment for HIV has most affected your life—for better or worse?
Two years into my journey on HIV meds, I spoke with my doctor about structured treatment interruptions because I was having a hard time with side effects. We agreed to try my being on meds for one week, then off for one week, and repeating the cycle. I’ve been doing this since 2002, and I believe it has really helped my energy levels without giving the virus a chance to mount an assault.
What is your refuge from thinking about and dealing with your health?
The biggest dilemma I have is my [low] energy levels, making me feel mentally foggy at times. Something that really helps is writing music with my band, Synthetic Division. Playing shows is also a nice change of pace from speaking about sexual health and HIV prevention.
What one thing has most aided your survival, and how difficult is it to overcome stigma?
Emotional support got me through the first 12 years of my HIV diagnosis. It’s what helped me survive the early years, before there were effective treatments. Today, my soul medicine comes in the form of my incredibly loving and understanding negatoid partner, Gwenn. We’ve shared a third of our lives together, and I’m looking forward to many more years with my best friend and lover—fortunately, they are one and the same!
Do you think there will be a cure in your lifetime—and if so, will you benefit from it?
For the first time in my life I do think a cure will happen in my lifetime. If I live a normal lifespan—that is roughly 40 more years or so. Treatments will get better and better, and eventually they’ll find a cure, or something that negates HIV’s ability to harm our bodies. Until then, we must prevent new infections.
What advice would you give to someone newly diagnosed?
To steal a page from Dan Savage: It gets better. When you test positive, there is a fear of rejection and that you won’t be able to find love. The best thing I told myself when I opened up about my status is that I didn’t want to date anyone who would hold my HIV status against me. Love yourself, and let HIV weed poisonous people from your life.
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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