Why Survive a Plague?
All of these candlelight vigil-years later and I remain on the sidelines: baffled and still so afraid.
Longtime AIDS activist and AIDS survivor Spencer Cox died at age forty-four from complications of the disease. Spencer was at the front lines of AIDS activism for over 20 years. First with ACT UP and then with Treatment Action Group, he helped get activists a place at the table with the pharmaceutical industry and federal agencies and sped up the development of life-saving AIDS medications. But in 2012, just a few weeks after fielding questions at a premiere of the documentary “How To Survive A Plague,” in which he appears in archival footage in the vigor of youth and health during the heyday of ACT UP and TAG, Spencer Cox died at Presbyterian Hospital in New York City. In the months before his death, he had become depressed, started using meth, and stopped taking his HIV meds. “He saved the lives of millions, but he couldn’t save his own,” his longtime friend and fellow activist Mark Harrington was quoted as telling The New York Times.
I can’t help but wonder if, rather than ask how to survive a plague, a more relevant question might be, “Why Would You Want To Survive A Plague?” This is the documentary I want to see.
I’m reminded of a couple of analogous situations that have prompted similar questions.
During my relatively brief but vital period of participation in 12-step recovery groups, I was frequently annoyed by often well-meaning people who would explain that these various substances, from cigarettes to cocaine, were bad for us; as if this fact would be a revelation to the addict. What a stunning denial in assuming that we WANTED to survive! What about our lives and the society we’ve created together made sticking around more attractive than our willing descent into addiction and death?
Secondly, I’m reminded that here, in this part of the American Southwest where my husband and I now live, there are a good number of people that the rest of us call conspiracy theorists but who think of themselves as survivalists. Personally, I’ve never been interested in surviving in a world where I would have to litter my yard with the bodies of those hungry and stupid enough to come after my stockpile of kidney beans. But there is a population of people, perhaps even a growing percentage of people, who want to survive NO MATTER WHAT. Again, I’m not among them.
I remain on the sidelines: baffled, wide-eyed, and more than a little afraid; but unwilling to survive no matter the cost, to be “safe” regardless of the isolation, to remain “on the beach” no matter what or who else is washed away in the tide of loss and suffering.
I was on the sidelines then too.
Sidelined and baffled:
In 1988 other gay men were scared enough to be unwilling to use a clean drinking glass in a longtime friend’s home. “I brought my own, thanks,” he said. “Weird,” I thought.
Sidelined and wide-eyed:
I’d been “out” all of what felt like ten minutes after a lifetime of fear from zero to eighteen. And now, now that, maybe, I could learn to not be afraid, now that maybe I could learn that I could be loved, now I was supposed to be afraid to love? No. No thanks. I’m here. I’m queer. I’m getting use to it. Fuck fear.
Sidelined and more than a little afraid:
On bathroom floors, hit square in the head with an aneurysm. In hospital hallways. With lesions and rare cancers and thin as a suggestion of our loved one under a sheet, the bodies piled up. Friends would not stop dying.
But unwilling to just “survive,” to be “safe”…alone.
Between marches and tears, between hospital visits and hospice trips; between funerals and dancing triumphantly to Sabrina Johnson’s house anthem “Peace in the Valley,” between the sound of ventilators and Doc Martens on Pennsylvania Avenue pavement…on the sidelines of fear, in stolen, precious moments of abandoning grief and remembering that we are men, gay men, gay men hurting, gay men loving; loving and hurting and grieving and healing in each other’s arms and between each other’s legs.
I was neither martyr nor saint nor “bug-chaser,” but a few of us could not, would not let fear win or even rule. A few of us would rather risk full contact and contagion rather than guarantee sanitized isolation. It was never more than then: the moment. It was life and death. It was loss. It was loss that was legion. It was love and the high risk and actual cost of love. It was personal. It’s always personal actually.
Every support group conversation, every “safer sex” talk or article rightly discusses the importance of the HIV-positive person disclosing their status with a potential partner; discussions include the respect involved in doing so. Most go on to advise that in dealing with the nearly inevitable rejection that will follow disclosure, to not take it “personally.” Don’t take it personally? How? This advice feels cold, removed from relational reality, and ridiculous to me.
Really? Don’t take it personally?
The man who, moments ago, was my lover is not avoiding me, you say, but just avoiding the virus. As it turns out we’re kind of inseparable, my virus and I. So you see it’s more than a little difficult to not take it “personally”.
It was personal on the phone, sharing secrets and laughing together.
It was personal at dinner as we nervously avoided using the L-word trembling on our lips; both of us worried that labeling it “love” would make it immediately evaporate.
It was fucking hot and deeply personal in the bar; as deep as his tongue in my mouth in the dark corner near the men’s room, as personal as his panting promises and plucking my attentive cock through the parting spaces of the 501 rivets stretched across my crotch.
It was personal when he said he wanted me, when he said he needed me, when he talked about nights and days and forevers;
in the steely, unbearably heavy moment when the color drains from his face,
when it feels like some soundtrack has been interrupted and all of the oxygen has been sucked out of the room,
the moment when he simultaneously swallows dry
and loud enough to be heard, says, “oh,” and reaches for his shoes and you know, you know that this is it, again, one more time,
one last time, maybe,
and you know,
as your heart sinks so low so fast as to now always be under foot,
And you’re on the sidelines…again.
Like I’m on the sidelines here in this conversation. I think many of us are. I think most, if not all of us, are actually on the sidelines.
The documentary “How To Survive A Plague” and the deep loss of Spencer Cox bring us and this issue back in to focus. After contributing so much and surviving so long Spencer is gone and we’re left with the mystery and questions of why someone who fought so passionately for and with all of us would have stopped taking his own medications and hastening his own death. Apparently surviving is not enough. How do we live and love and heal together? The profound lack of purpose, loss of passion and belonging that filled, or rather emptied, Spencer’s post-activist life has rightly been implicated. I fear this is true of many of our post-AIDS-as-a-death-sentence lives.
On Saturdays, I work at a coffee shop in the village near where my husband and I live. Last fall a cheery, extroverted, 50-ish man came in, ordered his coffee and stayed for a spell. He welcomed every distraction from his laptop and greeted and made lively conversation with each new customer that came in. In our conversation I learned that he had lived in this village twenty years ago, had lost all of his friends to AIDS, and had just been discharged from the hospital a few days before after another round of treatment for his own cancer. I was filled with sadness, a sense of camaraderie, and curiosity. Here was someone like me: someone else who had, inexplicably, survived the loss of his friends, the decimation of his world; but he seemed somehow happy. He laughed easily and made jokes with strangers. He must know something. He must have learned something for which I’m still searching twenty-five years later. I had to know and before my mind could reconsider I heard my mouth ask, “Are you glad that you survived?” His immediate answer was a hammer to my heart. Without reflection or hesitation he said, “No” and I didn’t know what to do. I just stood there a moment, my mouth open like a stupid fish, my breath caught again on that knot of grief in my throat that has never quite dissolved and my eyes welling up with tears. I didn’t know what to do. I still don’t know what to do.
I do know that I’m not alone and that maybe, in this one situation, I wish that I could say that I am. But I’m not alone and neither is that laughing and lonely man from the coffee shop. There remains an entire splintered, scattered, and searching population of us here
and still here
and still not knowing why. Why are we here? Why are we still here?
How do we step out into the tentative silence of a potentially momentary cease fire and find each other, not ourselves, but each other
and some molten and molting, melding, merging and morphing real community beyond sexual freedom, beyond heterosexist proving, beyond medical search and rescue, beyond political muscle, so beyond all of this that we’re back,
back to just you and me,
and then three
and then more,
broken and beautiful
so deeply into our common humanity
that we at last hit the Divine.
PreetamDas Kirtana lives in New Mexico with Kevin, his spouse, the love of his life. PreetamDas blogs at 2greatcommandmentpreschooler. His work has appeared in Dayton City Paper, semantikon.com, zackhunt.net (the blog of Zack Hunt) and calebwilde.com (the blog of Caleb Wilde). PreetamDas performed as part of Listen To Your Mother Albuquerque 2015.
This essay in not previously published.