Life After All

I sat with my paper ID number crumpled tightly in my hand. I was in the San Francisco Health Clinic. I had been there two weeks earlier to have my blood drawn for the HIV test. I was there to get my results. It was on April 15, 1986, and I remember that bright April afternoon as though it were yesterday, the day my life took a hairpin turn.

My number came up, and I was ushered into a dreary little office. I can still hear the nervous buzz emanating from the fluorescent overhead light.

The earnest social worker asked, "How would you feel if it came back positive?"

I thought, "Shitty, how would you feel?"

I uttered something like "I don't know." All I wanted was to get the fuck out of that claustrophic office.

"Do you want to discuss it?"

"Not with you. I do not know you." I thought. Instead, I asked, "Well, what does it mean?"

She said, "It means you have 18-24 months to live." It was four days after my 26th birthday. I had to get out of there.

The San Francisco Health Clinic was four blocks down the hill from the little cottage I had just moved into one month earlier. I had a new boyfriend and a new home. Life was pretty amazing. I was newly in love, in a new city, and I thought I had a new adventure unfolding before me. Little did I know.

When I began the four-block walk up the hill to my home, the same unremarkable street I had walked down had become Technicolor. The neighborhood had become Oz. It would take me several years to realize that I was in shock. Life had taken on a new urgency.

•••

After the diagnosis, I put my goals and dreams away and began living for the short term. In the mid-80s, San Francisco was akin to living in a war zone. There were silent bombs going off around us. Young men died very quickly. On the street, I’d run into guys who looked healthy one week, and within a few weeks, the local paper would publish their obituary.

I’ve lost track of how many friends have died from AIDS; it’s well into the hundreds. As I attended every funeral and religiously read the obituaries page, my constant refrain was “I’m next.”

It still surprises me that forty-three years later, at 66, I’m still here. Living in the aftermath of the early AIDS pandemic has been rich and heartbreaking. Living with HIV has taught me empathy and drive and given me a purpose.

Surviving AIDS is also uniquely traumatic. Many survivors live with the guilt that we lived, and so many of our loved ones and comrades died young. Survivor’s guilt is one aspect of something I’ve termed “AIDS Survivor Syndrome.” It describes the psychological ramifications that result from living through the HIV/AIDS pandemic and realizing we’re going to live into elderhood. It is the realization that aging with HIV is as terrifying as the prospect of dying young. I coined it because I lived it.

I’ve always been on the frontier of AIDS. I was part of a trial for the first U.S. Food and Drug Administration-approved drug to treat HIV, which is one of the reasons I’m alive today. I am among the first group of people still surviving the AIDS crisis and aging with HIV. At every iteration, we’ve entered new territory, which brings unforeseen complications and new opportunities.

Incredibly, science has seized upon these opportunities to develop new treatment options for people like me, and it’s almost unbelievable where we are now. Back in the 80s, when I learned I had HIV, I expected to live a few months. Today, if I were diagnosed at 25, I could expect to live into my 80s or older. It would be one pill a day or a shot every few months.

If I could talk to my younger self on the day I received my diagnosis, I would tell him not to put his hopes in the trash can, make plans, and set goals. Aging with HIV has been the hardest thing I’ve ever done, but it’s also the most rewarding. The decades of survival have given me greater empathy and a depth I wouldn’t have gotten otherwise. For all upheavals, 41 years wrestling with a (formerly) fatal illness, my life is filled with purpose and meaning. Because I turned my turmoil into activism, I’m surrounded by a large community of fellow survivors who enrich my life. I’m lucky I never felt ashamed or “dirty” for having a virus. I never asked, “Why me?” Why not me? I know I had a pleasurable, hardy sex life. I was shameless, and that is a gift.