May 2, 2011
Manager of the Office for Women's Health at New Jersey's Hyacinth AIDS Foundation, ex-prisoner, freestyle cruiser, positive for 23 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?
“It is important to not just survive HIV. It is equally important to live with it, so embrace it! Life will always present challenges. HIV just happens to a lot of good people.”
What change or development in your treatment for HIV has most affected your life—for better or worse?
Acceptance of the disease has been a tremendous milestone in my treatment. Through the years, acceptance has often been the deciding factor in my treatment compliance. I am grateful that the worst of times have passed, unlike the early days of this epidemic when I thought HIV was a death sentence. Those days are long gone. My treatment regimen is still complex, but today I understand that it is because of my commitment to treatment compliance that the quality of my life has improved for the better.
What is your refuge from thinking about and dealing with your health?
When I need to take a break and enjoy being physically and mentally focused, I turn to traveling, spa treatments, horseback riding, playing scrabble and going to concerts. I particularly love freestyle cruising on NCL (Norwegian Cruise Line). I make it a priority to cruise once a year.
What has been your major economic challenge since testing positive?
The shift in New Jersey’s income poverty guidelines from 500 percent to 300 percent [of federal poverty level] has affected my AIDS Drug Distribution Program (ADDP). Although I have private insurance, it has been economically challenging to pay out of pocket prescription co-pays.
What one thing has most aided your survival, and how difficult is it to overcome stigma?
My initial connection to the Hyacinth AIDS Foundation here in New Jersey served as a strong emotional support system. My involvement with the foundation gave me the tools to become an informed, empowered educator and advocate for breaking down the stigmas centered on those infected/affected by this disease. Additionally, I had the opportunity to participate in a gender-specific, peer-based educational program through the New Jersey Women and AIDS Network/Sister Connect. I was given an opportunity to become educated while building relationships with other HIV-positive women. It is through my personal support systems that I have learned that having emotional support is important for my personal survival.
Do you think there will be a cure in your lifetime—and if so, will you benefit from it?
I cannot be certain of a cure in my life and time. I want to be a beneficiary of a cure, but I can only hope. I do believe that through advancements in research, HIV will continue to be a manageable disease for myself others. As I approach 50 this October 15, I am grateful that 30 years later, I am still here to fight for myself, my family and others.What advice would you give to someone newly diagnosed? When I received my diagnosis, I had no idea that I would be around to tell you this. To my surprise, I am alive and living well, because I never gave up or into the thought that HIV would beat me. Please don’t quit fighting for life. You can live a long healthy productive life too. Keep thriving, striving and surviving. If that’s too much to ask, then just follow me…I’m still on my journey.
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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