Why I Stopped Being an HIV Advocate, Then Started Again

In 1988, I met an AIDS activist, and my life was forever changed. It was during my high school years when I first heard of GRID (Gay-Related Immune Deficiency) on the local news.

Years later, they gave it another name, AIDS, and its presence became an ever-present shadow in my life. Friends would get sick and disappear, lovers would beg not to be seen in their final moments, and families rejected their own flesh and blood because of unfounded facts.

The impact of HIV activism on my life

I lived in New Orleans, and I knew there was a task force with a hotline and free testing. I knew there was hospice where the unwanted were taken to die. And I knew that there was no cure. I was resigned to my eventual exposure and, because of the lack of treatment, death.

But I met that activist who told me that being HIV positive did not mean I had to die. I could fight back, and even though I would ultimately leave this world, which we all will, I could impact it through my actions.

They took me to my first protest, and I was stunned to see so many people raising their voices. Then I was angry as I thought about my friends who had died alone and scared and the faces of people whose names I never knew and vanished into thin air.

I wasn't afraid anymore.

Building a life amidst uncertainty: Love and HIV

It wasn't long after that when I met someone I fell in love with. We dated and moved in together. We began building a life, traveling, and making plans for a future we both knew was not guaranteed but one we wanted so deeply we allowed ourselves to believe in it. That was an amazing time.

I became very active in the community. I ran with fellow agitators fighting for queer visibility. I volunteered with our Pride organization and eventually served as co-chair. I signed my name to the founding charter of our first LGBT community center. There was a March on Washington steering committee and another committee for the 25th anniversary of Stonewall.

And then, everything changed again.

Facing HIV

My partner fell sick. We had been together for 6 years and had never gotten tested. We just hoped for the best but now the worst came calling. He told me he had known he was HIV positive the very first month we met but was afraid to tell me as he believed I would run for my own life.

Now, faced with the deception, I had a choice to make.

The years I had spent fighting for our community and connecting with others in this very situation helped me understand that no one was to blame. There was no finger to point; I had been an active participant and made my decision. I stayed with him for another two years until he passed away on a rainy night filled with thunder and tears.

And that is when I stopped. I looked back at all the time I had spent fighting and yelling in the streets, and it felt like I had gained nothing. In fact, I had lost almost everything. Mostly, I had sacrificed crucial moments with my partner that could have been spent together, but now, it is never an option again.

Rekindling my commitment to HIV advocacy

Time passed, and I found love again. I promised that I would not make the same mistake again. I focused on building our life, a career, and a home together. Still, I would at times participate in phone banking or letter writing, but I was mostly in a bubble, concerned mainly with my own treatment issues.

Not long ago, someone I knew learned they were HIV positive. They didn't discover this until they fell sick and went to a doctor. Their roommates threw them out of the apartment, and they had to move back to rural Georgia to live with their parents. Unable to work and with limited access to healthcare, we eventually lost touch, and I could only assume the worst.

No matter how often it happens, we always ask, "How is this happening now?" I thought about this and realized the question actually is, "Why isn't this happening more?" And it is because of the actions so many took and continue to take in this fight against HIV.

Understanding the aging HIV population and my role as a survivor

I began diving in again and was immediately hit with statistics about the aging demographic of people living with HIV. I understood that it was me these reports were talking about. I am at the forefront of survivors living with HIV, the people who first benefitted from protease inhibitors and cocktail therapy.

So, I was reminded of my responsibilities in this battle and remembered I still had something to say. I have a story to tell and will continue to do so because sharing our stories is the greatest tool we have for ending AIDS in our lifetime.