May 2, 2011
Rebel rouser, former all-star footballer, Housing Works’ national field organizer,
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 can quote many people who have been inspirational and purposeful in my development as an activist and as a man. One of the many that stick out happened while I lived in Houston. A friend and mentor told me, “Fighting for the right to live and love as we choose has to be as important to the fight to end AIDS as anything. Without that element, what are we really fighting for?”
What change or development in your treatment for HIV has most affected your life—for better or worse?
As someone who is classified as a long-term nonprogressor, I have never taken one HIV medication of any kind. Over the years I have been encouraged at different times by different physicians about starting meds as a “preventive measure.” To this point I have declined starting, and my body has continued to self-regulate. I continue to believe that starting HIV meds should always be an individual choice, not a mandatory or arbitrary exercise by health care professionals. I am in support of research that utilizes individuals like me and my physiological makeup to find a vaccine or cure that can give others better health outcomes.
What is your refuge from thinking about and dealing with your health?
Photography and photojournalism have become my passion and escape from all things HIV. After leaving Norfolk State University as a graphic design major and athlete and after testing HIV positive, I really kind of ignored my interest in the arts or, at best, relegated it all to hobby-ish activities. I am now attending a degree program in photography at Boston University Center for Digital Imaging Arts, developing a portfolio and website, and actively mapping out professional and exhibiting opportunities. My next goal is to make my dream of a community theater real as well.
What has been your major economic challenge since testing positive?
When I tested positive in 1986 as a freshman in college, the doctor at the downtown Norfolk, Virginia, Red Cross told me that I had at most nine years to live. Believing that my life was over, I made no preparations, financial or otherwise, to live or work as an adult. I have been working to recover from burning many educational, economic and professional bridges over the years, and I have managed to reach a level of stability in my current state. However, I sometimes wonder where I would be if I hadn’t steered my life off the road 20-plus years ago.
What one thing has most aided your survival, and how difficult is it to overcome stigma?
Emotional support and stability are hugely important to my well-being and day-to-day sanity. It is not always easy to stay afloat, and I have even fallen under more than a few times. Trust and acceptance from my family and closest friends have been invaluable over the years. In many cases, they defined my survival when I couldn’t.
As for stigma, the stigma that I impose on myself is more damaging and damning than that perceived or received from others. I have self-destructed in the face of some of my best and closest friendships and relationships because of my own fear, instability and insecurity. Every day I seek to find a balance and security within myself before diving into my day and life.
Do you think there will be a cure in your lifetime—and if so, will you benefit from it?
I fight and advocate for an increase in funding and research to find a cure every day, and I hope that in my lifetime I will see one. I believe that if we make that commitment, we will find that elusive cure. I believe that my son and grandson will benefit and the lives of those around them as well. However, I do hope that a parallel and hugely relevant fight continues to identify and develop constructive strategies to address the factors that contribute to the HIV/AIDS epidemic—homelessness, homophobia, poverty, sexual violence, etc. Finding and producing a cure will be needless if these factors persist. We will just sit and wait for the next epidemic.
What advice would you give to someone newly diagnosed?
Remember to breathe. Embrace your faith. Seek your personal and emotional support. Trust and accept your fear and uncertainty as normal human reactions. Once the ground stops moving, seek the answers you need by finding those around you who are unconditionally connected and whom you trust most. Many of us die spiritually, emotionally and intimately long before the physical death arrives. Most important is that we never stop being complete human beings.
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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