Under Reported

be spared. [I joined] ACT UP New York in the fall of 1987. Being a member of ACT UP made me a better, brighter, more compassionate, more defiant person.” Butch McKay: “The last time I held Tivvis in my arms, he asked me to promise to get involved, and almost thirty-five years later I’m still involved. I honor Tivvis with everything I contribute to the fight.” Charles King: “I came out as a gay man to my mentor, Reverend Cofield, tendered my resignation, and began my journey to do something about HIV and AIDS.”

Over the course of this forty-year pandemic, we’ve experienced great losses as our friends and family members succumbed to AIDS; we’ve dealt with unfathomable grief, we’ve struggled through years of confusion and chaos and false cures, and we’ve dealt with death as a constant in our daily lives for four decades. Steven F. Dansky asserts, “Within wakeful consciousness and in the dominion of dreamscapes, what we’ve experienced over the four decades since the beginning of the AIDS pandemic are flashbacks of suffering and loss through illness and death; disappearance and displacement; surviving perpetual heartache whether in silence or in public.”

Some of the seemingly random moments we’ve lived through over the last forty years are indelibly carved into our memories. Charles Sanchez vividly remembers hearing a radio report that Magic Johnson had just tested positive for HIV, and how awkward (then relieved) he felt getting his first kiss after his diagnosis. Claire Gasamagera remembers the courage of the activists who promulgated The Denver Principles in 1983, and Larry Kramer’s empowering slogan “Turn your grief into rage.” Some of us even found romance through our activism. Charles King recalls that “I met Keith Cylar at ACT UP New York in the summer of 1989. It started with a public debate and ended up with him seducing me. We were together for fifteen years before he died and helped to found and lead Housing Works during that time and fought and won many battles.”

Along with the major, life-shaping changes that we’ve undergone, we’ve also been shaped in smaller ways by the pandemic. Victoria Noe: “What has stayed with me most——even more than the suffering, injustices, and deaths——is one way it affects me to this day. For a long time, if someone disappeared, if I lost contact with someone (I’m talking about gay men in particular), I assumed they were dying or dead. It made me paranoid about losing touch with my friends. I even made some of them promise they would tell me if they were seriously ill.

Top: Charles Sanchez (1993 and now)

Bottom: Reverend Yolanda Vega (now)

Steven F. Dansky (now): Photo by Greg Anderson, Silence=Death Portrait #3, Las Vegas, NV, 2017, digital, 12 by 8.988 inches

I didn’t realize why I felt that way until I started writing about AIDS and grief. When I looked at my behavior in the context of those times, it made sense.”

The majority of what we remember, is unspeakably painful. “My closest friends died when I was in my mid-twenties,” said Mark S. King. “That changes a person. We faced eternal questions at such a young age. Why are we here? What is life and death? Is there a God, and does it love us? I sat with friends who were dying in my guest room, posing those questions and not getting answers. The stories of what happened to us deserve to be remembered and repeated.” Butch McKay shared a similar sentiment. “My heart has been broken so many times it is beyond repair,” he said. “I use the scars to forge on for those unable to do so, sharing their stories, assisting those that followed them, fighting stigma, and working to change the political will of the country. I have been blessed with a community that defines unconditional love and practices it with every step they take and every breath they breathe. I breathe for those who no longer can, and march for those who led the way. with unimaginable strength, courage, compassion, and love. They are my heroes, and I will continue their journey.”

As it did for Mark S. King, and thousands of others, the pain of loss drove Rev. Yolanda into activism as well. “I remember thinking that I didn’t have very long to live. I decided that I would live my life fully out loud and proud for as many years as I have left. That is when I decided to come out as trans femme and live my life as Yolanda. I also became very involved in the HIV/AIDS community and created a fundraising event for People with AIDS in Vermont called ‘Winter Is A Drag Ball.’ I moved back to NYC in 2001 and have been active in the HIV/ AIDS community here with performances and fundraising efforts ever since.”

Sometimes, great pain and grief can arouse great strength, resilience, and even a sense of purpose. Rev. Yolanda asserts that “being HIV-positive has had a positive effect on my life. I have learned the importance of self-care and have had the opportunity to help others with their own self-care.” And finally, Mark S. King again: “Please know this: I am not defined by this great tragedy. My life is lovely and fulfilled today. I am happy to tell the story, but I won’t judge younger people who have other things on their mind. Every generation has their stuff, their great challenge. Tragedy isn’t a contest. If I can’t use my experience as a tool to have more empathy for other people, then what the hell was it all for?”

What indeed? Well, for one thing, the AIDS pandemic turned all of us into individual repositories of sorrowful memories of great pain, loss, death, and grief. The pandemic taught us how to tap into unknown reserves of bravery and resilience, what Steven F. Dansky called “our reemergence from a state of disbelief and despair.” And it turned many of us into storytellers, truth-tellers among all the lies and misinformation, the preservationists of our own history. Steven F. Dansky again: “I believe it’s essential that we place preservation at the center of our collective life, including oral histories, photographs and video, and writing. We must support those organizations that perform this mission. Historical preservation is fundamental because memory can be fragile, subjective, unstable, and contingent on the different credibilities. Memory can be diminished from biomedical factors. Or from heterosexism that compels us to forget, trivialize, mask, negate reality, or view our experience as insignificant. So many of us were lost during the height of the AIDS pandemic——those narratives must be told, recorded, and archived.”

As the AIDS pandemic turns forty, those of us who bore the brunt of it from the beginning have become “Elders of the Tribe,” activists, advocates, chroniclers of lives lost and hopes dashed. We gratefully accept our responsibility to share, record, and preserve those stories of living through hell for forty years.

Thanks to Bill Bytsura for granting us permission to run the photos of Jay Blotcher and Charles King, both of which are part of the photographer’s The AIDS Activist Project. For more information, visit: https://www.billbytsura.com/ products/the-aids-activist-project.