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And so, like many others, I adjusted my sexual practices to safe sex only. And life went on.
Yes, I still had moments of panic, wondering if that bruise on my arm was the first sign of a KS lesion, or whether that sudden attack of diarrhea was the flu, food poisoning, or something worse. There was no “AIDS test,” no identified virus or infectious agent, no idea of how long the disease might be incubating in your body. So, if you didn’t die or wind up in the hospital with an AIDS-related infection, if you got better, you didn’t have it and could assume that the Angel of Death had passed over your door.
And, yes, I was lucky. For many, AIDS was already a full-blown nightmare. People were dying terrible, horrible deaths in a matter of weeks, seemingly out of nowhere. They were subjected to abuse in city hospitals, ignored by attendants who were too scared to enter their rooms to bathe them or deliver their food. With no legal protection, people with AIDS—or even those suspected of having AIDS—could lose their jobs or be thrown out of their homes by terrified roommates, family members, or landlords. And when they died, funeral homes often refused to take their bodies.
The one bright spot was the response of the lesbian and gay community, including our doctors and health professionals, who banded together to create information networks and support organizations, providing care, companionship, and legal advice for people who often had nowhere else to turn.
It was 1983 when our community first began to show up in numbers, whether volunteering for newly formed AIDS organizations, participating in public vigils, or filling Madison Square Garden for a historic AIDS benefit. People with AIDS (PWAs) also stepped forward. Refusing to be defined by their disease and rejecting the label of victim, they drafted the Denver Principles, proclaiming their rights as people living with AIDS to have a voice in all research, treatment, and policy-making decisions about the disease affecting their lives. Their empowerment movement would soon spread across the country and later set an example for people with other diseases for years to come.
We wouldn’t really begin to understand the full scope of the AIDS crisis for several more years, at least not until 1985, when HIV, the “AIDS virus,” was identified and a test was developed. Even then, there was still more that was unknown than known.
But that’s a story for later.
By the end of 1983, there would be more than 3,000 reported cases of AIDS and 1,283 deaths, with 42 percent of all cases reported in New York City.
So where does that leave Michael, James, Becky, Connor, and me? Living our lives. Looking for love. Calibrating the risks of both. Figuring out who and what is important to us, and how to become our best true selves.
And keeping a wary eye on the gathering storm.
Writer and activist Ron Goldberg was a member of ACT UP (AIDS Coalition to Unleash Power) from 1987 to 1995, where he helped organize many of the group’s most famous demonstrations, participated in countless zaps and actions, and served as ACT UP’s unofficial “Chant Queen.” Ron worked as research associate for filmmaker and journalist David France on his book How to Survive a Plague and enjoys speaking at high schools and colleges about the lessons and legacy of AIDS activism. Ron is currently working on a memoir about ACT UP and his life on the front lines of the AIDS crisis.