Death Sentences Be Damned
We’ve All Had More than a Few
by Hank Trout
Every long-term survivor I’ve known has received at least one HIV/AIDS-related death sentence passed on them. For those of us who survived the Plague Years (1981–1996), the death sentences began immediately. I have written elsewhere that “our doctors handed us the HIV diagnosis in one hand and a death certificate in the other, just waiting for the appropriate dates to be filled in.”
My HIV/AIDS-related death sentence was not my first.
I was born with congenital heart malformation——the valves leading into my heart were too large, the valves leading out too small, and my heart was swelling as a result, disarranging other organs and wearing small holes in the bottom chamber of my heart. (I apologize for not knowing the medical terminology for all of that; frankly, I’ve refused to learn it for fear of vicariously reliving that horrible time.) The solution was open-heart surgery. In 1958, this particular surgery had been performed on only two kids before me, and they both died on the operating table. It was quite a new, experimental procedure.
The operation was successful (obviously); but the doctors at the Cleveland Clinic, where the surgery was performed, told my parents (within my hearing!) that even with successful surgery, I would die before I was fifteen.
I’m sixty-six now.
I’ve outrun that death sentence for over five decades.
The second death sentence came, of course, when I was diagnosed with HIV in 1989 at age thirty-six. I had spent the previous eight years watching helplessly as friends withered and died—I stopped counting the dead when the number reached thirty-six. So even though the death sentence was unspoken, I knew what I was headed for in the coming months and years. I had seen this movie too many times before, and now I was going to be a bit player in that movie.
My doctor tried diligently to get me to take one or more of the very early HIV/AIDS medications like AZT. But everyone I knew who started taking AZT got much, much sicker and died within six months. And so, I refused take AZT or DT4 or any of the other early meds. Then in August 1996, my doctor informed me that I had ZERO t-cells and my viral load was deadly high. He told me bluntly, “If you don’t start taking this medicine, you will be dead by Christmas.” By then, the “cocktail” of medications had become available. And so, very reluctantly, despite the expense, the drudgery, and the side effects, I decided to start the medications.
Another death sentence thwarted.
I’ve been thinking about all of this lately because, just recently, another friend died. I first met Marlon Woodward at the Saturday morning coffee gathering of the Elizabeth Taylor 50-Plus Network, a social organization for gay and bi men, both cisgender and transgender men, both HIV-positive and negative long-term survivors. I loved Marlon’s wickedly offbeat humor and his highly tuned bullshit monitor. It’s been some time since a friend died, and Marlon’s death hit me especially hard. In the 1980s and ’90s, the deaths came so fast and so frequently and in such horribly violent ways that I had sort of inured myself to the pain of loss. A death in 2019 just seemed so far outside of time and space and reason that it rattled me to the core. Marlon’s death also brought back to mind all the pain and terror and chaos of the Plague Years, all the death sentences all of us have outrun. I guess Marlon just couldn’t run any more.
When we were in our twenties or thirties, and our doctors said, “You’re going to die soon,” the very idea of a “future” became ridiculous. Thus, at a time when we could have, should have been preparing for our futures — getting a university degree, investing in stocks, buying a home and building a family, etc. — instead, we were told by our doctors and social workers and other professionals to prepare to die. And that is exactly what many of us did. We left work and went on Social Security Disability Insurance, we sold our life insurance policies, we maxed out all our credit cards, and we began preparing our goodbyes.
And then a funny thing happened. We didn’t die. At least, not all of us died. No matter how many death sentences were levied against us, we pushed on, we cried and fought together, and tried as best we could to create a self-sustaining, self-caring community, a community of death sentence survivors.
Just as we came together for care and support at the very beginning of the pandemic, so now we must come together to thrive together as the first generation to live with HIV. As we enter the autumn of our years and find ourselves coping with the unique, unexpected problems of aging with HIV, we will need each other more than ever.
As I turn sixty-seven in December, I cannot help remembering the many death sentences my friends and I have all outrun. And I’m very happy that an HIV diagnosis is no longer necessarily an unavoidable death sentence. I’m delighted that no young man or woman who gets an HIV diagnosis will ever hear those fearsome words, “You’re going to die soon.”
Death sentences be damned! We are going to thrive!
Hank Trout, Senior Editor, edited Drummer, Malebox, and Folsom magazines in the early 1980s. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a forty-year resident of San Francisco, where he lives with his husband Rick. Follow him on Twitter @HankTroutWriter.