As a tribute to the many who lived through the early days of the HIV/AIDS epidemic, and for those who left us far too soon, TheBody is sharing a dozen deeply personal essays written by entertainers, health care workers, lovers, artists, allies, writers, and activists from a time when many remained unaware of, or confused about, a publicly identified syndrome. From now through the beginning of July, we’ll share new essays here each week. We invite you to read, share, and reflect.
Phill Wilson, 65, founder of Black AIDS Institute (retired), Los Angeles
I was 25 in 1981. I came out in 1980. I’d recently moved back to Chicago, where I grew up, after completing college. I was engaged to be married [to a woman] and our wedding day was rapidly approaching, which made me force myself to think about what was going on with me. So, I ended my engagement and became a couple with Chris Brownlie [who died of AIDS in 1989].
We met at Club Baths in Chicago. Fast forward to 1981. Chris’ doctor discovered he had swollen lymph nodes. So he came home and shared that with me. I’d been noticing I had swollen lymph nodes as well. At that time, we were both on gay sports teams. One of our team members was too sick to come to practice one Wednesday. Within a few weeks, he was dead. So between that and talk about this strange disease among gay men, which I think I’d read about in Blueboy [a gay porn] magazine, and our lymph nodes ... we had our nodes biopsied, but it was too early to ascertain anything because there was no diagnostic test.
In winter 1982, we moved to L.A., which is where it really started. L.A. was still in pretty severe denial. In San Francisco, the Kaposi’s Sarcoma Foundation had already been created. It would eventually become San Francisco AIDS Foundation. So, a group from the KS Foundation came to L.A., but the L.A. gay and lesbian community center declined to host them, with some hostility. They thought that [talk of a health crisis] was hyperbole and even homophobic. But out of that visit, a hotline was created, which eventually became AIDS Project Los Angeles. So Chris and I went through the hotline training and began volunteering. In those days, it was less activism and more personal care of friends who were getting sick and dying.
The period of calling AIDS “GRID” was very short-lived. What lasted longer was the distinction between AIDS and “ARC,” “AIDS-related complex,” during which we thought that maybe some people had the ability to suppress the virus [so that it doesn’t advance to “full-blown” AIDS].
My friends group was very multicultural, so my impression from the beginning was that AIDS had no respect for race—Black, white, and Latino were all dying. But it appeared at first that the vast majority of men who were dying were white, because Black men were not surrounded by hordes of people who were documenting their stories.
What was really despicable was that Black men were being lulled into a false sense of security because there was not a public conversation [going on around Black gay men’s risk]. Even some white men thought they were protected because they were sexually active only with Black men.
Later in the 1980s, we began to lean on CDC data showing that Black people actually were heavily affected, including that Black women already made up half of AIDS cases among women. News reports started saying, “The changing face of HIV,” but, in fact, it never changed. It was always affecting Black people, and to say otherwise was like saying that Columbus “discovered” America.
By the mid-’80s, white men were starting to congregate around the newly formed white [AIDS] agencies. But among Black gay men, unless we are explicitly included, we are implicitly excluded. Gay bars were still discriminating. If I can’t trust you to share space with me in a bar, I can’t trust you to care for me in a life-or-death situation. I started the Black AIDS Institute [in 1999], but prior to that, I started the Black Gay and Lesbian Leadership Forum [in 1988].
Howard Grossman, M.D., 67, Wilton Manors, Florida
I was in med school 1979-1983 and started on the wards at the public Kings County Hospital in Brooklyn, which served a low-income Black population. Both before and after the first articles came out, we didn’t know what this was, if it was a virus or if it affected anyone other than gay men. But we were seeing a large number of IV drug users who we thought had explosive endocarditis [infection of the inner heart, often seen in IV drug users] and died. Their lungs were just a white-out. In retrospect, I’ve often wondered how many of them really had PCP [pneumocystis pneumonia, a common AIDS-related illness] and therefore were not going to respond to the antibiotics we gave for endocarditis.
Despite the large number of heterosexual people we were seeing and the impact in Caribbean communities [in the surrounding area of the hospital], AIDS was just not recognized early on as affecting anyone but gay men. A classic example of unequal access to health care.
When I was an intern in 1983, a patient brought in this old scotch bottle that was filled with all kinds of material that looked like vegetable stuff and maybe some dead animal and other things. He got it at a voodoo ceremony that was held in Prospect Park—and said it was supposed to be a cure for AIDS. I gave it to the infectious-disease person who was supposedly in charge of dealing with HIV—there looked like there could have been blood in it. At this point, everyone was still arguing about how this was being transmitted. I thought if there was blood, that could be a source. I thought he was going to send it to the department of health. Instead, two years later, I saw it sitting up on a shelf in his office. Never sent. This was the level of fear and ignorance at the time on all sides.
I also remember that, in 1982, a year after the first reported cases, there was still no mention of this in our classes. Three other LGBT students and I decided to do a talk about lesbian and gay health issues—and we did it one evening. I wish I had the tape we did, but I remember that we mentioned at one point this mysterious disease that was being reported, but that it seemed to be just in a group of very promiscuous people who did a lot of party drugs.
And remember, until about 1984, no one was wearing gloves or any kind of protection. They were still arguing about how transmission was happening. After a cardiac arrest, you could be up to your elbows in blood. None of my co-residents became positive, however, except for one very unlucky intern who got stuck in the hand with about 5 cc of blood because some idiot left a syringe full of blood on a bed.