Well, this week is bringing up a lot of memories for me. Today I’m going to share some of them. I already did this once, in a memoir called A Fragile Circle. But a number of years have passed since its publication, so this is a post script. I don’t do it to bore you. I’m writing it here for two reasons. One, this is my blog. Two, there is a lesson, as I’ve said before, that is about the value pharmaceuticals bring to our lives when they perform miracles that deserves attention. We do well to remember the early days of the AIDS epidemic and compare it to what it is like today.
This week began with Memorial Day – a day to remember the fallen. Yesterday, June 1, was the marking of the 25th anniversary of the first reports of a new virus infecting gay men called GRID – Gay Related Immune Deficiency. On Sunday, June 4, it will be 19 years that my partner Joseph Foulon passed away. I have been thinking about dead people all week.
When that first article appeared, I was sitting with a friend who read me the article from the New York Times. The words were like a fire alarm. The theories about what was causing the new illness were many. It was too much sex. It was drugs that wore down the immune system. It was something that happened to people who led the wrong life. It didn’t, my friend said, appear to be something that could affect us – a belief that echos today among the policy making minds of countries being hit hard today by a burgeoning epidemic.
Then, in the second year, one of my law professors died. It was obvious that it was the new disease.
In the third year, I began volunteering at the Gay Men’s Health Crisis, doing deathbed wills. When I started work there, eighteen of us made up the staff. Of that group, only five of us are known to me to be left alive. Then, many were the day that I went to work to find that one of my co-workers crying because he had just been diagnosed, or worse to fine one had died.
This was the time before any test for HIV. It wasn’t even called HIV then. It was called HTLV-III, which the name it got after GRID. People who were infected didn’t know that until they were diagnosed with one of the plethora of diseases that suddenly appeared. You had a shortness of breath one day, and pneumonia the next. You had a bruise, and a deadly cancer the next. Pretty much, whatever symptom appeared, within six months, you were dead. Luckier ones lasted one, maybe two years. Extraordinary people lasted longer.
The epidemic was primarily confined to large cities – New York, L.A., and San Francisco. Outside, people barely new what was happening. Inside, there was a degree of panic. Children were kicked out of schools because they had a relative with AIDS. People were turned out of their homes. They lost their jobs. Those who were supposed to help them – doctors, nurses, social workers – turned them away. Ambulance drivers in New York set their car on fire after transporting a patient. A social worker burned her dress at work. Nursing homes turned away the dying.
By 1985, I was an employee at Gay Men’s Health Crisis. I got daily RIP sheets (Rest in Peace) to tell me which of my hundreds of legal clients had died. Some days there were 30 names to a page. I noticed that my clients began to change. I started walking into hospital rooms that had mothers and grandmothers lying in the bed. It was also then, in my own life, that I met someone who took my breath away.
Since then, the first man I dated in New York died. So has the last. So have most in between.
Jane Rosette, a photographer and I attended a meeting of a group of men and women who had decided to form an organization called the National Association of People with AIDS in San Francisco. Joe was on the founding board of directors. Of all who attended that meeting, only Jane and I are left.
As I said, my partner died in 1987. That is me 19 years ago in a photo taken six weeks before his death. I don’t think the experience of losing a spouse is the same for any two people, but still, there is a lot of commonality. It creates a hole in the fabric of your life that can never be patched, no matter what your effort to cover it up. You may make it so that other’s don’t see the tear. But like any garment you have patched, you are acutely aware of the flaw. Every time you look in the mirror, you see more of it than you do of the rest. It is a hole in your eyes, in your heart and in your soul. When you look in the mirror, you can’t miss it. It is part of you, like your face. It is with you every day. It never sleeps. You ask questions that never have any answer.
The epidemic dragged by for years without hope. There were a lot of false remedies. But medicine could only treat the infections, not the underlying cause – not the damage to the immune system. I attended several of the (then) annual International AIDS Conferences (today they are every other year). In the Berlin conference in 1994, the bleakest of all outlooks for the future was presented by a speaker during the opening plenary session that set a depressive tone for the entire conference.
Then, two years later, in Vancouver, Canada, Dr. David Ho uttered four words that were inconceivable – "eradication of the virus." Two years before that, he would have been laughed at. But on that day in Vancouver, every heart in the packed auditorium pumped with a new hope. He was talking about protease inhibitors and a combination therapy that seemed to stem the ability of the virus to reproduce.
His vision of eradication was not real, but the hope was. You know the rest of the story. The introduction of this new therapy brought about a near-miraculous change in the landscape of the epidemic. The ceaseless mortality did not stop, but it was stemmed. I stopped doing AIDS work at the end of 1997, not because the epidemic was over, but because I had to.
There are not, and never will be for me, words to express the profound gratitude I have for that change, even though most of my friends were gone by then. I am comforted by the thought that, as a result, there are fewer who, like me, who must weave and weave and weave to repair the fabric that is their life. For whatever the mis-steps of the industry are, and there are many, they have kept that hole from appearing for countless thousands, and for many more yet to come.
When I look back, and think of my experience, and multiply it by the thousands, perhaps millions of others who have lost someone dear, it too takes my breath away. For those that have not had to experience it, I am grateful.