Before protease inhibitors were introduced in the mid-90s, we bore a staggering toll of suffering and death
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 1985. Just two weeks earlier, a press aide 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, this 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 health care geeks paid much attention to the first notice that appeared in the somberly-named Morbidity and Mortality Weekly Report, put out by the Centers for Disease Control and Prevention.
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 I paused to remember for a few moments as we mark how all of our worlds have changed with the 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, though, that he was intent on living.
James was in some of the early clinical trials of AZT, and he carried a beeper around to remind him to take the 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. Sometimes, 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 a hospice. He died there 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-90′s, 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 met. He could tell you what new treatment was at what stage of clinical trials at any time in the early to mid-90′s.
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 boardrooms.
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 manufacturer’s door, or lying 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 up against the virus.
But, thankfully, it’s different now than it was in those earliest, 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.
Mubarak Dahir is editor of Express Gay News in Fort Lauderdale, Fla.
This article appeared in the Dallas Voice print edition, June 16, 2006.