When AIDS Was Terrifying

Living Well

In the late 80s, we heard about AIDS daily in the news. And misinformation and fear were widespread.

I wondered how I could keep my young sons safe. And eventually, I volunteered as a Community AIDS Educator. I made my sons watch the training videos with me, and our living room became a sex-ed learning center for the curious adolescents in our neighborhood. My favorite video was the one where Reuben Blades explained safe sex by putting a condom on a banana.

I eventually gave many AIDS-talks. But I never got into a school, which was my original goal. AIDS Educators weren’t allowed in schools back then, because we might say the word “condom” in front of teenagers.

When I spoke to groups, no-shows and walkouts were normal. Big audiences meant that management had required all the staff to attend.

Once a community college class decided to boycott me because I wanted to bring along an HIV-infected person, even though the CDC had begun stressing that HIV was not airborne-spread. I went alone and brought a recording of my friend explaining his feelings about being ostracized. Some students cried, and others hung on to their fixed ideas.

I also volunteered as an AIDS Buddy to people infected with HIV. One day, my supervisor called to ask if I would be the Buddy of Chris, a young man in the final stage of AIDS, already in the hospital, about to slip into a coma. When I arrived, Chris lay in the bed, emaciated, with KS lesions on his face and arms. And his devastated parents sat nearby. I felt inadequate, so I just acted on instinct. I ignored the warnings and sat on the edge of the bed and held his hand, and I began to introduce myself. His expression calmed – perhaps he just thought, “Oh good, finally, someone to help my parents.” I returned each of three days, until Chris died. And his mom asked me to be at his funeral. She said it had comforted her – that I’d been willing to hold her son’s hand and talk kindly to him.

I also co-facilitated a wellness group for PLWA’s (Persons Living With AIDS). One afternoon, I went crab fishing with some of the guys from the group. Each of us stood in the surf, with a chicken neck on the end of a string. The plan was to wait for a crab to latch onto the chicken and then jerk the string hard enough to toss the crab up on dry sand, and then catch it with a bushel basket. As we were waiting for the action to begin, one by one, each of the guys handed me his string and disappeared. There I was, alone in the surf, holding a half-dozen stringed chicken necks. The guys had gone off down the beach following a good-looking guy. Ha! It was refreshing, and I liked it a lot!

Picasso’s “The Tragedy,” by A. de Rond

My most challenging Buddy was a single woman with two young sons. My role was to help her make phone calls to get the help she needed. I found it difficult, not only because it was challenging to observe her with her sons while knowing what was coming in their near future, but also because she was very angry. At first, she even seemed to resent me. And I thought that we weren’t a good match, because I was healthy with happy sons back home. The days I visited her were the nights I cried myself to sleep. Over time, she opened up more. And I realized that her anger made her life more bearable than her depression did – because the anger gave her back some of the power that the depression took away – and she could function more easily. Either way, my only option was to look past her façade and keep caring.

In the beginning, my son said to me, “Don’t bring anyone home,” afraid that his friends would find out. But it wasn’t long before we all fell in love with my first AIDS Buddy. Steve visited our home often and became our good friend. At his memorial service, people stood one at a time to describe how he’d been the first person with AIDS to greet them at the agency, or the first person with AIDS to teach them about strength and compassion. I stood and said that he’d been the first gay man with AIDS that I’d felt attracted to. Everyone laughed. And later, each of the other guys wanted to know if he’d been the second.

If you didn’t live it, it’s difficult to grasp how terrifying the 80s were. Testing positive was a death sentence.

Today, the CDC estimates that 1.2 million people in the United States are living with HIV – and nearly one in seven of those are unaware they’re infected. And approximately 50,000 Americans become newly infected each year.

Back in the 80s, I had what I thought was a brilliant idea: fortunes, like those found in fortune cookies, incorporated into condom wrappers. Imagine a responsible couple having a good laugh and keeping it positive while they open the wrapper and read an upbeat prediction for their future. And it’s still a good idea – because condoms are still important!

This post is featured on The Huffington Post.

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