I loved Robert Chesley’s 1986 play, Jerker. The main character has phone sex with dead AIDS guys. He realizes that he has a duty to experience life “in the flesh” for his disembodied fallen comrades.
This powerful image made sense to me. By then, I had lived in New York for twelve years and with HIV for five. I knew quite well the particular guilt many Manhattanites suffer for not doing enough to fully experience all that the city offers. So I tried to do it all: Fire Island, Mineshaft, Saint, Studio 54. Theater, career, sex, dancing. Being a New Yorker was a full-time job.
I became positive at the beginning. I saw the devastation that AIDS brought to my beloved city. For me, moving forward and living fully were the best ways to survive—not out of guilt, but from a deep sense of responsibility to myself and to the men who were now gone.
I left New York in 1987, traveled in Southeast Asia, and then settled in Santa Fe where I had great professional success and found—and then lost—a new community. Ten years later, my health failing, I moved to San Francisco and went on disability. I expected to die within a year.
One year became twenty. Now I’m sixty-six. I survived. Well, more accurately, I didn’t die. I did, however, keep busy.
After a year of leisure and excess, I made the deliberate decision to find something to challenge and engage me. I understood that without a job, it’s hard to create structure, find social interaction, and derive satisfaction from professional accomplishment.
I began studying Chinese. I knew it would be demanding and I craved the discipline. Being on a college campus was thrilling. I soon became a writing tutor. Working with foreign students sparked an interest in ESL, which led to my continuing volunteer work as a teacher. I had found my path forward.
I never did master Chinese, but that didn’t matter. I continued to find projects that ignited my passions, such as organizing community forums, visiting homebound older gay men, and helping new arrivals adjust to the city.
I also found hobbies I never expected to need. I joined book groups. I learned to bake well and ballroom dance poorly.
I am now involved in setting up a buddy program for gay male refugees and asylum seekers in the Bay Area. And I spend two hours a week at the San Francisco Public Library teaching adults to read. I am actively engaged in The Billy Community, a group of heart-centered gay men.
But I’ve also railed at the unfairness of being left behind when I should have had my sweet tragic early exit and my hopefully-well-attended memorial service. I’ve resented the burden of slogging through middle age only to now face the specter of accelerated aging, decrepitude, and death from long-term HIV. I’ve mourned the truncated arc of my career. I’ve struggled to find meaning and connection despite disappointment and rejection. Some days I’m just plain tired of putting on a good face and trying so hard.
But whenever I feel sorry for myself, I stop and think: I’m alive and all those other guys are dead. How dare I complain? Yet I hate when well-meaning friends say: “Well, you didn’t die, so you should be thankful.”
Just because we didn’t die doesn’t mean we don’t suffer. “It could have been worse” should not shut us up. But complaining only goes so far.
As the narrative of “long-term survival” unfolds in the media and in our community, I worry about its bias toward victimhood. I don’t want to dismiss or deny the pain, sadness, loss, isolation, and fear for the future that many of us experience. Nor do I want to gloat about how well I’m doing.
The few recent articles and documentaries on long-term survivors can appear to be telling the whole story. However, the reality of long-term survival is complex and nuanced. I challenge artists and journalists to dig deeper and avoid easy generalizations.
Long-term survivor advocacy groups call for well-deserved acknowledgment and much-needed services. Yet I worry that these efforts might perpetuate entitlement—more free stuff!—and promote pity both for ourselves and from others.
We have survived much worse. I call on us to continue moving forward. I challenge us to find ways to create meaning and connection. I urge us to contribute. I insist that our voices be heard.
Let’s live fully for our fallen comrades. Let’s dance for those who left the dance floor too soon.
Lewis Nightingale lives in San Francisco with his non-husband of twelve years.