This article originally appeared in A&U Magazine.
For a handful of months now, I’ve been contemplating a decision that I know many long-term HIV survivors have contemplated before me.
That is, I have considered going off my medications—all of them—and letting Nature and the virus just take their course. As a long-time advocate of a patient’s right to choose when and how to end his own life when facing a terminal disease, the decision to cease medication seems to me a perfectly rational, honorable decision available to me.
I keep it open as an option.
Mind you, I’m not contemplating suicide. Relax! Don’t call 9-1-1!
I tried that once, in early 1990, just shortly after my diagnosis with HIV in 1989.
My friends and I had all spent years helping to take care of dying friends. I simply could not bear the thought of putting them through more of the kind of pain and anguish that they and I and so many others had already endured. It seemed to me, at the time, to be much better to spare them that burden.
Also, when I told my then partner about my HIV diagnosis, the first words out of his mouth were, “How could you do this to me?!” and he stormed out of the house. That told me very clearly that I could expect no compassion from him.
And so, one very cold early winter evening in 1990, with one bottle full of muscle relaxers and another full of painkillers that the partner had been prescribed after a back injury, plus a fifth of Jack Daniels, I sat down in the middle of my living room floor, cranked up Springsteen’s “The River,” and proceeded to swallow as many fistsful of both pills as I could wash down with gulps of Jack.
The last thing I remember is hearing, “Is a dream a lie if it don’t come true, or is it something worse?”
And then I passed out.
And then I awoke handcuffed to a hospital bed with vacuum-cleaner-like tubes down both my nostrils and what’s-his-name sitting beside me. I remember the first words I spoke as I glanced to my left and saw him: “Oh fuck! It didn’t work.”
Nowadays, all in all, suicide is just too much melodrama for my old gay nerves at this point, so I know that I’m not contemplating any actual, destructive steps at any time.
However. I do reserve, as an option, stopping the medicines. Someday. Maybe.
My reasons are plenty. To begin with, since 1996 when the first combination therapies became available, I have willingly poured insanely toxic chemicals into my body on my doctors’s promise that the drugs would keep me alive. From AZT and Crixivan, through Truvada, Norvir, Reyataz, Prescobyx, Descovy, you name it—for twenty-two years I have filled my body with the most toxic medications imaginable on the promise that they would keep me alive. And I am indeed grateful that they have kept that promise.
But confronted with “quality of life” issues, the question becomes, “Is it worth it?”
Aye, there’s the rub.
When the medications I take to keep me alive are doing irreparable harm to my body, is “staying alive” sufficient reason to continue taking them?
If there is no improvement in any of my conditions—no relief from the pain, no reversing the damage done to my legs and spine, no chance of correcting but only “dealing with” other damage, all of which require swallowing or inhaling even more toxic chemicals—what is the point?
The HIV drugs and/or the virus and/or something have given me a medicine-ball-sized belly while at the same time eating away at my muscles, particularly my leg muscles, to the point where I cannot climb even the smallest step without assistance. Leaving the apartment requires using a wheelchair, which I cannot do alone. Thus, my lack of mobility affects not only me.
And so, yeah, I’ve been contemplating letting go. And I know I’m not the only long-term HIV survivor who has considered it. I suspect that most of us have.
I choose to stick with the meds for now.
My dearest friend reminded me the other day—after patiently reading my text messages listing every one of my current ailments in the most maudlin terms—“Well, your brain and your fingers are still working. What’s the problem?”
He’s good at snapping me back to some semblance of reality when I need it. He’s right. I’m a writer. A writer writes. My brain and my fingers still work fine, so I’m sticking around a while to see where this goes!
The opinions expressed in this article are those of the author and do not necessarily reflect those of the Diverse Elders Coalition.