Donald's memories of the early days of AIDS



when I first started seeing stories in the local gay papers that something bad was going around. People were getting a rare form of pneumonia that left them devastated and usually unable to fight off a second bout with the same illness. Then a rare skin cancer surfaced. It caused purplish spots on the skin. The odd thing was that apparently only gay people were susceptible. The same ailments were appearing in the gay communities of New York City and Los Angeles. It became a common practice to look for spots on the body while showering. Gay Cancer! That's what it was called at first. Use of Poppers was one of the first things that was blamed for causing these new diseases. One by one, many of the common "vices" were erroneously blamed. Conspiracy theories blamed the CIA for creating a disease that killed only gays. Eventually somebody realized that the problem was a weakened immune system that couldn't resist the attacks of Pneumocistis Pneumonia and Kaposi's Sarcoma, the skin cancer.


GRID was the acronym that was first used, "Gay Related Immune Deficiency". But still nobody knew what it was all about or what to do about it. It wasn't given a lot of attention because it was a "gay" problem and people didn't care. But the religious right cared a lot. They found it an effective issue to use to rally people against the gay community. It was the Wrath of God, our punishment for our decadent, sinful lifestyle. The name was changed to AIDS (Acquired Immune Deficiency Syndrome) but the stigma of being a gay disease continues to this day. Proposition 64 was put on the California ballot by an opportunist State Senator named Lyndon LaRouche. He wanted to put us in concentration camps to prevent the spread of AIDS. We were experienced in fighting anti-gay legislation but we needed to put all our resources into the fight against AIDS. Fortunately the voters of California used common sense and voted down the ridiculous proposition.


AIDS was pretty much a non-issue at the State and Federal levels. Politicians attempted to steer clear of the AIDS issue rather than appear to be supporting the gay community. President Reagan (1981-1989) never even mentioned the word AIDS while in office. California Governor Deukmejian also avoided the issue. This irresponsible and homophobic avoidance of the AIDS issue by our political leaders deserves much of the blame for the rapid spread of the disease, many thousands of unnecessary deaths, and enormous expense.

The City of San Francisco was hard pressed to find funds for the great amount of additional health care needed to face the crisis. No one was helping us in the fight against AIDS, so a network of volunteer organizations sprung up and relied on the generosity of the community for money to operate. The San Francisco AIDS Foundation and Shanti Project were two of the first groups to provide education, testing, counseling, and hospice services. Other groups like Project Open Hand, which delivers food to the homes of people with AIDS, soon followed. San Francisco's response to the AIDS crisis became a model for other cities to follow in developing their own response to the crisis.


Since the early days of the emergence of the gay community in the Castro, there has been animosity between gays and lesbians. Naturally, Lesbians were part of the gay community and had a right to expect acceptance from gay men. But we were finally having a dream come true. We could socialize in public without fear. The bars were a nonstop party and the sexual energy was intense. I admit that it was selfish and unfair, but we wanted the party to ourselves and lesbians were less than welcome. It's true. There was heavy discrimination against women in the gay bars in the 1970's. So it was quite a surprise to many of us when the SF lesbian community mobilized and supported us in the early days of AIDS. They organized blood drives, fund raisers for AIDS charities, and offered moral support. They deserve our gratitude and an enormous amount of respect.


Friends and neighbors were dropping like flies. When you didn't see someone that you regularly ran into on the street, after a few months you began to wonder if maybe they were dead or dying. It wasn't uncommon to hear people greet each other with "Oh, Thank God you're alive!", or some similar statement. The Bay Area Reporter (BAR), one of the two gay weekly newspapers, began publishing obituaries. Photos were encouraged because, due to the nature of our social life, faces were familiar but last names weren't. When people picked up the latest issue of the BAR, they usually turned immediately to the obit page. The number of published obituaries quickly grew. Every week some 20 to 25 faces looked back at us from the obit page. There were always a few that I recognized, and too often I was moved to tears on seeing the face of a friend.


At one point in San Francisco, so many people were dying of AIDS that a bizarre reaction occurred. People who tested negative to the HIV antibody began to have guilt feelings. In most cases, they had been as promiscuous as their loved ones who were dying, but they apparently had been lucky. Many were embarrassed to admit their negative HIV status. This led to the creation of support groups for HIV- people.


Gay Bath Houses were a very popular social institution in the 1970's, not only in San Francisco, but all over the United States and the western world. When AIDS became an epidemic here, the politicians had to deal with it. Unfortunately it was dealt with as a social issue rather than a health issue. One issue that polarized the gay community was the debate over the possible role of the baths in spreading AIDS. One side saw the baths as a filthy environment responsible for the spread of the disease. Others saw this as a civil liberties issue and argued that the baths should be used to educate the public about unsafe sex. Our elected leaders had to make decisions about issues that would surely anger much of the gay community, a group of voters whose support they needed on election day. The difficult decision was eventually put in the hands of Doctor Silverman, the head of the Health Department. He was pressured by Mayor Feinstein to close all the bath houses in the City, and did so in April 1984. There was some protest but most people saw it as a sensible decision. To my knowledge no other City followed San Francisco's example and now bath houses flourish everywhere but here.


I have a friend named Casey. We've been close friends since he became my next door neighbor in the mid-1970's. Casey was young, blond, handsome, charming, and had a fantastic body. As a student of photography, I used him as a model quite often. We spent a lot of time together and I could easily have fallen in love with him. So I was crushed when I learned that Casey had been diagnosed with AIDS. This was probably 1983 or so. To make matters worse, this was my very first time to have a really close friend come face-to-face with what we all thought of as a death sentence.

Very often when someone was diagnosed with AIDS back then, they went into a research frenzy, determined to learn as much as possible to keep themselves alive. Casey was no exception. In fact, all his friends were amazed at his enthusiasm and determination. He scoured scientific publications to keep abreast of emerging treatments and formed an organization to compile and distribute this data to those in need. This allowed them to knowledgeably discuss their disease with their doctors. He went on to organize a series of lectures by experts in the fields of research, medicine, nutrition, alternative treatment, and even activism.

Fortunately, Casey turned out to be one of the lucky ones, now referred to as "Long Term Survivors". He's still alive, and he's still beautiful, and I still love him dearly, but in the last year his immune system has begun to show signs of deterioration.


It is quite a heavy ordeal to have to carry the burden of knowing that a good friend will die in a few months or sooner. It is quite another kind of anguish to have to stand by and offer love and cheer, to keep on smiling when you see someone in pain, covered with lesions and wasting away. Dementia sometimes occurs during this period. It's hard to smile when a dear friend thinks that you are stealing from him, lying to him, or trying to hurt him. I find it easy to make extra time for friends who need me, but when they get really sick, I have trouble facing them and I feel guilty for turning my back. Then they die and I feel even worse.


In the '80's I lived on Collingwood Street, right around the corner from 18th and Castro. I spent a lot of time in the bars and so my circle of friends included quite a few bartenders. Sadly, most of them died of AIDS. I have no idea why that would be, and I've never seen or heard it mentioned elsewhere, but I know that as a group, they were hit very hard by AIDS.


One day I saw a poster requesting volunteers for an AIDS research project, the San Francisco Gay Mens Health Study (GMHS). They wanted to study 1000 gay adult males both physically and psychologically over a period of years in hopes of finding some threads to follow in the search for a solution to the AIDS problem. The aim was to have about 50% of the group HIV+, and the rest HIV-. With an extensive database on each participant, when one became HIV+, they could look through his record for clues to his conversion.

I volunteered and was accepted into the program. I had to report once every 6 months for a complete physical. Included was a questionnaire (a long one - maybe 12-15 pages) about my work, sleep, eating, sex, and drug habits, and my thoughts on various aspects of the AIDS crisis. About 10 vials of blood were drawn for various tests and several were frozen and stored for possible use in research on some future health crisis. (A research project on Hepatitis in the SF gay community during the 1970's provided a wealth of information when those frozen blood samples were examined by the GMHS.) GMHS was funded by the Federal Government for about 5 or 6 years but funding was dropped when George Bush became President in 1990.


Gay liberation, the sexual revolution, and San Francisco's permissive traditions contributed to a very high incidence of sexually transmitted diseases (STD) in the gay community in the 1970's. As evidence that we realized the seriousness of the AIDS crisis and reacted sensibly, the rate of STD's rapidly plummeted to less than 10% of the pre-AIDS rate.

In the mid-eighties I had a party at my house and I videotaped scenes occasionally throughout the day. I recently viewed the tape of that party and counted about 40 guests. Nearly half of those friends are no longer with us. I don't really want to think about how many friends I've lost to AIDS. 100 would probably be a reasonable guess. There have been 10 or more that I would consider "family". At the suggestion of a friend, I have included a page of pictures as a tribute to FRIENDS WHO HAVE DIED OF AIDS.

Today AIDS victims don't give up and die like they used to. Progress is being made. AIDS is no longer a death sentence, but it is still out of control. It has had a maturing effect on gay men. We had to grow up and face reality. We had to fight a monster with no help from the rest of the world. We had to reevaluate our priorities and curb our excesses, and I think we've matured nicely. I often think about how differently our community might have evolved if AIDS didn't interrupt our wild party and our rapidly growing political clout.

Uncle Donald
San Francisco
September 2002


This page created September 10, 2002 and modified September 14, 2002
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