Remembering the Early Faces of AIDS
Scott sat across from me at the restaurant in San Francisco, holding my
hand and smiling sadly, telling me he was "one of the lucky
ones." It was early August of 1985. Just two weeks earlier, a
spokesperson for Rock Hudson announced the actor had AIDS. Just two months
later, Hudson would be dead.
It was the summer I came out, and my first trip ever to San Francisco.
Other than holding hands, I didn’t dare touch anyone in the city that
was Ground Zero for the deadly virus. In a voice mixed with relief and
trepidation, Scott pondered his good fortune during our dinner date.
"I didn’t get AIDS," he said with an uneasy comfort. "I
only got ARC."
Today, few will remember AIDS Related Complex, a diagnosis given at the
time to people who exhibited similar but weaker, less damning symptoms of
those afflicted with AIDS.
It wouldn’t be long before the medical establishment realized that
ARC was simply a precursor to AIDS, the virus’ early ravages on the
body, the first warning signs.
But at the time, I remember feeling a rush of tempered happiness for
Scott: He was sick, I thought, but at least he wasn’t going to die.
The good news on ARC was short-lived, as most any good news seemed to
be back then. As it became evident that ARC was a mirage, I thought of
Scott, who I would never see or hear from again, and I wondered how he
fared, if he was still alive, or when he died.
Ironically, this June—Gay Pride month—marks the 25th anniversary of
the first published reports of a strange and little-known disease that was
observed to cause pneumonia and a devastated immune system in five gay
men.
Few people other than a handful of government healthcare geeks paid
much attention to the first notice that appeared in the somberly named
Morbidity & Mortality Weekly Report, put out by the Centers for
Disease Control. But it wouldn’t be long before the disease was
impossible to ignore, particularly for gay men.
Scott is just one of the scores of people with AIDS who live in the
recesses of my mind, people I met in the darkest hours of a dark time.
People who showed incredible courage and strength and hope in a time of
plague and despair. People who I paused to remember for a few moments as
we mark how all of our worlds have changed and metamorphosed with the
advent and developments of a quarter century of AIDS.
James had the most beautiful blue eyes I had ever seen. They were deep
and crystal clear and full of profound sorrow. And they scared the hell
out of me. When I looked into his eyes, I was sure I was looking at death.
James was the first man I ever really knew with AIDS.
It was 1988, and I was a graduate student at Penn State University. By
then, AIDS was nothing new, of course. Horrific reports of gay men dying
ghastly deaths from the strange and horrible disease were all over the
news and TV reports.
James had been living in Philadelphia, but he could no longer take care
of his ravaged body by himself, and so he came home to his parents. I
figured he had come home to die. I learned that he was intent on living.
James was on some of the early clinical trials of AZT, and he carried a
beeper around to remind him to take the poisonous pills every four hours,
even in the middle of the night. I remember the day James announced he was
no longer going to wake up at 4 a.m. to pop AZT. He needed to sleep. He
needed a rest. Like the rest of his friends, I was troubled that he would
go against the advice of his doctor and the medical establishment. After
all, AZT was just about the only hope anyone had back then.
We didn’t know at the time that people were taking frighteningly high
doses, and that, for some, the AZT was more deteriorating than the HIV. It
was one of the great lessons we as a society learned from AIDS: Listen to
your body. Question authority. Do your own research, and don’t blindly
follow the advice of doctors.
Some-times, you have to take your life in your own hands.
Rick had been trying to take his life in his own hands for months. But
once he got sick, he was never able to wrestle back his own fate. By the
time I met Rick, he literally looked like a walking skeleton. It was 1991,
and I had volunteered as a "buddy" for an AIDS organization,
someone who went around and did household chores for the sick, or took
them to dinner once in a while, or did the grocery shopping.
Rick was bed-ridden and almost never left the apartment. Just getting
back and forth to the toilet took us nearly an hour. Almost any movement
was painful. "My bones feel like they are scraping against each
other," Rick would yell out as I held his frail body.
He
had never intended things to get this desperate.
A nurse friend of his had promised him the right mix of relief when the
time came. But at the moment of reckoning, the nurse backed out, fearful
that if the deadly concoction was traced back to him, he’d lose his
license, or worse, go to jail.
So Rick asked me to buy him a gun. The last time I saw him, he held up
a pillow and began sobbing uncontrollably. "Do it!" he pleaded,
begging me to smother him. "I promise I won’t resist." Days
later, he was taken to hospice. He died alone, with his eyes wide open—the
way he had always faced death
Jonathan had no intention of dying. He willed himself to live through
this horrible epidemic. Despite burying two lovers and countless friends,
Jonathan was an amazing optimist.
"Not everyone is going to die from this," he would tell me in
his well-appointed brownstone. At the time, there was no sign he was
right. "Someday," he said, "they’re going to find a cure,
or at least a treatment, and I’m going to be here when they do," he
insisted. I was amazed at his mix of optimism and denial, the only things
he really had keeping him going.
Sure, by the mid-90s, a few drugs had come along to treat the worst
symptoms of the disease, but it was like putting a band-aid on a gunshot
wound.
Still, Jonathan believed the drugs would save him, and he knew more
about them than most doctors I ever met. He could tell you what new
treatment was at what stage of clinical trials at any time in the early to
mid-90s. He also knew street theater and politics, and was a leader in the
heroic activist group, ACT UP. Highly educated and a successful
businessman, Jonathan could get the attention of researchers and
pharmaceutical representatives because he could don a suit and tie and
feel at home in their boardroom.
But neither was he afraid to get his hands dirty. If the boardroom
negotiations proved fruitless, Jonathon would be on the front lines,
protesting in front of the drug manufacturers door, or laying down with
dozens of others to block traffic during rush hour to draw attention to
the unaffordable prices of the most promising medicines. This was not the
time to be polite, he would say.
I remember when he first started telling me about a new class of drugs
called protease inhibitors, at least two years before the revolutionary
cocktails were available to the public. People were seeing amazing results
with them, he had told me, and I looked at him hoping he was right, but
wondering if his optimism had once again got the best of him.
But Jonathan was convinced these were going to change everything, and
he was pulling every political and social string he could to get on them.
He died a few months later, from heart complications brought on by some of
the experimental drugs he was taking.
I can’t remember the last person I know who died of AIDS.
Of course, people do still die from the disease, and it is still a
terrible scourge, and we shouldn’t let our guard down against the virus.
But, thankfully, it’s different now than it was in those earlier,
darkest days. We should all be thankful for that, and be glad that on the
weekends we can turn our attention back to pool parties and tea dances,
rather than hospital rooms and memorial services.
But every once in a while, it’s good to pause, and recall the faces,
and the hard times, and the courage and strength and humanity that a lost
generation of gay men endured.
They are worth remembering.