Recently I joined a FB group, Gay NY in the 70s and 80s, just as it expanded exponentially in size. It was quickly evident from the posts that there was an immense hunger for the men in my age cohort who lived through that era in the city to reminisce about those decades. Post after post expressed a similar trajectory – moving to NY after college, an excited discovery of the city and the sine qua non gay life it offered at the time, the establishment of a circle of friends that soon became family, the struggle with loss and fear as AIDS took hold, just as New York itself was changing into an increasingly unaffordable and scrubbed-up version of itself.
I realized after several weeks that most of us sharing on the site were HIV-positive and had survived AIDS quite unexpectedly – we had almost all thought, upon sero-converting back then, that we would suffer the same fate as our brothers dying around us.. And I realized this was an opportunity to compare my experience with theirs and see how many of them had suffered from the same sense of dislocation and disorientation that I had.
One of the gifts of this group is that I finally have access to a concentration of gay men of a certain age to whom I can ask some sociological questions dear to my Long-term Survivor/ Writer’s heart.
Due to the nature of HIV, there were a great many of us who sero-converted in the 80s, but turned out to be non- or slow progressors for a decade or more, sometimes just barely making it to the time of effective meds as we began to suffer from full-blown AIDS. And even for the first few years of new treatments, if you were like me, you mistrusted that they would actually work long-term, ready to hear you’d developed resistance.
So, for the better part of 20 years, many of us lived with the expectation that at any moment, our HIV might blossom into full-blown AIDS. This fear was immeasurably reinforced by the unrelenting reality that most months, at least one friend or lover was sick or had recently died. (The HIV-negative also suffered from the fear of sero-converting and the stress of losing their friends, so I don’t exclude them from feeling they lived under a sword of Damocles as well.)
To cope with this mental pressure, the survival strategy I developed (without even knowing I was doing so) was to shrink the space in my brain I devoted to thinking and planning about the future. I simply could not bear the disappointment of investing (literally and figuratively) too much in my dreams becoming reality. My very sense of time became distorted. I lived on what I call the “two-year plan,” and when I discovered crystal meth, one might even say I lived on the two-week or even two-hour plan, or as close as I could to living in the present-- an ostensibly spiritually-elevated state which I used to rationalize my drug use as an empowering act. Where this eventually led was rather extreme in my case, (prison) but when I got out and got clean, (2004), I realized the cocktails really were likely to give me a fairly normal life span, and I began to slowly realize that I was suffering from a sense of intense disorientation brought on by those years. I had done too good a job of excising the future from my thinking process, and I discovered just how important it was to reconstitute that thinking, how essential it was, for example, if I were to catch up to where I would have been professionally had I not gone on disability, if I were to save money for retirement or to buy a house, or think about my relationships as potentially long-term again.
It was hard. So much so that I honestly began to believe that all those years of tension, of waiting for the ax to fall, of dealing with more grief than most people endure in a lifetime, had neurologically altered my brain permanently.
So these are my questions to the long-term survivors here (and that moniker may apply to the HIV-negative, as well.) Does anything (or everything) I just described resonate with you? Did you also let go of thinking of the future, and have you had to work to get that ability back again? If so, how long did it take you and do you now feel you think again like a “normal” person? Did you manage to pick up where you left off in your life, and now have trouble accepting that you are 65 but your career reads more like you’re 45 (or even younger?) Do you possibly have to work into your 70s because you have no nest egg? Are you resentful that you are living through a second iteration of proximity to death, as your friends and relatives start to get ill or die from the normal ailments that come with age, and you face them yourself? Do you feel like you’ve filled that quota of loss and disease and are pissed that you have to go through it all over again? In the comments, I would very much like to hear whether you identify with part or all of what I’ve outlined above. I even wonder if there’s a book in our experiences, a sort of reverse AIDS quilt honoring our experiences as survivors. Because, yes, we were the lucky ones, but we are also veterans of a terrible war that changed us forever. We aren’t remotely who we would have been if AIDS had only been imagined in some speculative work of science fiction. (An interesting question for another post, perhaps.)
So far, a lot of likes, but only a few sharing of stories. One “I have to think about this” — which I believe (hope) might be what many are doing.
MCO 2024
Your observations are spot on. I would suggest “Out of The Shadows. Reimagining Gay Men’s Lives” by Walt Odets. The book had a profound effect on me.
Demosthenes