“I am a warrior fighting the virus that’s trying to kill me,” Kurt Weston [A&U, November 2005], once told me. Diagnosed with AIDS in 1991–and a few years later with CMV retinitis, which took away most of his eyesight–the award-winning photographer continues to fight, and win, his war against HIV. His artwork is a testament to his experience, and it documents his survival and activism.
HIV and AIDS long-term survivors are, indeed, warriors. They are mentors, artists and activists who give younger individuals the courage to fight their own wars related (or not) to HIV and AIDS. And like Kurt Weston, many long-term survivors use their art and activism to remind us of those early days of the pandemic.
Since June 5 is HIV and AIDS Long-term Survivors Awareness Day [read more about it in this month’s Feature article], I asked a few artists–many of them long-term survivors, themselves, also activists and allies–about the meaning of HLTSAD. And they shared riveting stories of loss, hope and triumph, as well as memorable artwork.
Eric Rhein [A&U, December 2020] is a long-term survivor, visual artist, and the author of Lifelines, “a monograph-memoir.”
Being a long-term HIV survivor is intricate and complex, and for me the analogy of living through war resonates. Yes, there are joys, new territories, and dreams fulfilled, yet tempered by the scars…. Much goes into staying alive and moving forward. Long-term survivors hold a vast collective history. Telling our stories through art documents our experience and empowers our lives. Creativity is a life spring. There are times when I am feeling off-center, when I take note that I’m getting to experience life, when my friends who died of complications from AIDS do not. This is part of why I make works of art that honor my friends who are no longer alive, as in my AIDS memorial Leaves.
My late friend Robert Levithan was a long-term survivor himself, until his death in 2016. Robert was an inspiring, supportive presence for the HIV and AIDS, and gay communities, as a psychotherapist, writer, and activist. It’s a privilege to be able to help keep his story alive. As I am now age sixty, I’m conscious that the time I have left to accomplish what I hope to do in this world is fleeting. Perhaps this comes from being a long-term survivor.
Nancer LeMoins [A&U, August 2012], is a St. Louis native visual artist living in San Francisco for many years. Her testing HIV positive in 1986 has only inspired her to create art that “makes noise” and raises awareness about HIV and AIDS, and not only.
I was given less than a year to live. I lost so many dear friends…. So, I feel that it is an honor to be alive. I recognize that so many of us didn’t get to survive, and I want my life to honor their spirits.
My job now, as a long-term survivor, is to hold everyone who needs love and support, those who are faltering and alone. We are all full of grace when we let ourselves be filled with it. We have so much to give, and the giving quickens the grace of all of us.
Miguel Cardenas, [A&U, March 2022] is a New Jersey visual artist and activist, and the co-founder of Jersey City Pride.
Miguel Cardenas online: @miguelcardenasjc on Instagram; @miguelcardenasartanddesign on Facebook.
Thinking of June 5, the Long-Term HIV and AIDS Survivors Awareness Day…I was never even aware there was such a day. Thinking about it, a barrage of thoughts and feelings came to mind—sorrow for those we lost, a bit of [survivors’] guilt as well, but also immense gratitude for having the good fortune of still being here and having so many friends around me that are also survivors.
Then something very personal happened quite recently that brought my thoughts into focus. I had my regularly scheduled quarterly doctor’s visit with the same doctor I have had for over twenty-five years, and he reminded me that he was retiring and that this would be our last doctor/patient appointment together. Again, I was overcome with sadness, joy, gratitude, and nostalgia, all at the same time. We hugged, and I even cried a bit. I thanked him for his care, his empathy, and friendship for so many years, and reminded him that he kept me and my friends alive, when most of us didn’t think we’d be around this long.
So that’s who I’m primarily thinking about on June 5—Doctor Dennis Karter, and the many other medical professionals like him who have worked tirelessly, cared for us, persevered, and stood by us for so many years, even when the odds seemed to be against us. There wouldn’t be survivors without them.
Ronnie Queenan [A&U, November 2013] is a long-term survivor and visual artist who creates healing art, which, in turn, helps raise HIV awareness.
The remembrance of June 5 is bittersweet for me. After losing countless friends and family at the beginning of the AIDS crisis there is still deep sadness for me. However, I am ever so grateful that myself and others are long-term survivors. I have always said that, as a world of humanity, we all have AIDS, meaning everyone on this planet knows someone who has been affected by or infected with this virus.
Grey Cross, of Grey Cross Studios, is an artist and art activist living in New Orleans, Louisiana. He shares a powerful story that made him better understand “the long-term survivors of HIV.”
At the time, I understood HIV awareness, but not so much the responsibility of being a survivor. Yet, one of the models I had come in to pose for me in the studio changed my awareness completely.
When he first came to my studio to interview, he looked like someone out of the nineteenth century. A devout Jewish man in his late fifties, he had just come from the temple wearing a yarmulke on his nearly balding head, a traditional Bekishe robe and even the traditional Jewish sidelocks.
As we talked, several facts came to light. He was gay. His partner had died from AIDS during the worst time of the crisis. Soon after his partner’s passing, he was also diagnosed with AIDS. AZT had just become available at the time, and he was in one of the original patient studies. Unlike many, he survived, but it was hell on his body.
A few years later, he also was diagnosed with cancer and began aggressive therapy to combat it. He survived that, too. [Then] the cancer came back, and he once again survived it.
Here was this amazing man, standing before me, who had survived death against overwhelming odds, and lived to talk about it and counsel others by not being afraid to tell his story. He said he had survived because he knew many before him hadn’t. He had their strength in him.
Then he took off his coat, unbuttoned his shirt, and revealed a tattoo on the right side of his body. Running from just below his right breast and stretching all the way to his waist was a series of numbers. There were perhaps twenty-five lines of numbers.
Then he said, “this is why I survived.” He pointed to the highest number and said, “this is the date my husband died from AIDS. And these,” his hand brushed the rest of the numbers, “are the ID numbers assigned to every relative my family lost to the concentration camps in World War II. This gives me my strength.”
He buttoned up his shirt looking me straight in the eye. When he finished, I took up his hands in mine and pressed my cheek against them.
“When can you come for your shoot?” was all I could manage to say to him. The image [shared here] came from that shoot, and I think it sums up the emotion I had while working with him. Needless to say, he taught me more about being a survivor than anyone else I’d ever known. We all have a story of survival to tell. Few were as intense as his.
Kathy MacKay [A&U, May 2015] is a former photojournalist, and co-author and photographer for Dying in Vein: Blood, Deception … Justice. Her photography has appeared in newspapers and magazines around the country, as well as in two television documentaries. Currently, she is revising her memoir––a narrative that meshes the global story of contaminated blood products with her marriage to an HIV-positive hemophiliac. She is also working to preserve the stories of those affected by HIV and AIDS.
Long-term survivor Barry Haarde was triumphant in so many ways. Like thousands of people with hemophilia in the eighties, he contracted HIV from a prescribed blood product. Barry learned of his diagnosis while reading a form letter, leaving him distressed in the face of death. He watched his brother-in-law die. Then his brother. Both hemophiliacs. The AIDS hysteria forced Barry to hide his truth from the world. To pretend. To carry his pain alone.
Barry triumphed over AIDS. Decades later, he braved potential bigotry and HIV-shaming to reveal his truth. Turning to activism, he spoke to audiences about HIV and AIDS, and peddled across the country five times to raise money for hemophilia organizations. With daily social media posts, he honored his fallen hemophilia community members, including my husband, Dave, who died in 1997.
When I photographed Barry dipping his toes into the Atlantic Ocean and raising his bike toward the sky at the end of one of his cross-country treks, I witnessed triumphant Barry.
But long-term survival doesn’t guarantee a life free of the burdens of HIV. Life-extending medications wreak havoc on bodies. Survivors’ guilt grinds at the psyche. Sex is dangerous.
Barry never found the companionship he had longed for. In his journal, he wrote of one love interest––a vivacious dancer and singer. Fearing HIV would send her running, he ran instead.
Barry killed himself four years ago. A gunshot wound to the head ended his concealed pain. June 5, the HIV and AIDS Long-Term Survivors Awareness Day, reminds me of the need for a system of emotional support for long-term survivors…because broad smiles and victory signs don’t always tell the whole story.
Oftentimes, the outward appearance of triumph doesn’t reflect the inner suffering. I think that this is what June 5 is also about, and that we still have work to do.