Long-term HIV survivors sure don’t have it easy. They lived through the AIDS crisis of the 1980s and 1990s, experiencing not only the fear of acquiring a deadly virus that scientists and medical professionals knew very little about, but also the stigma, homophobia, sexism, racism, blame, and deep shame that came with it. Add to that the fact that friends, lovers, and other loved ones were falling victim to AIDS, dooming them to die a miserable and horrifying death.
Out of the roughly 1.2 million people living with HIV in the U.S., 54% are at or over the age of 50, according to the Centers for Disease Control and Prevention (CDC). Long-term survivors made it through to see the dawn and hope of antiretroviral medications, turning the tide from HIV being a death sentence to keeping people with HIV alive and healthy, only to also endure the guilt about living when so many perished. Balancing all of those emotions with the desire to live life fully and not dwell on the past is extremely hard for many of them.
“After you’ve dealt with 93 friends and colleagues who died of AIDS ... and I kept a running list. That’s one of the things I do. Because I don’t want to ever forget people,” said HIV long-term survivor, advocate, actor, singer, and writer Bruce Ward. “You do get numb after the first five or six, and you sort of develop a bit of a screen, which I think contributes a lot to this PTSD and grief.”
Ward has been living with HIV for four decades. “I’m one of those rare people who knows when I got the virus, and that was in 1984 before the virus was actually isolated and discovered and tested,” Ward said. “Then, in 1986, a year after they started testing, I was diagnosed. So, it’s been 40 years.”
Ward was involved working in the AIDS community, as well as singing in the New York City Gay Men’s Chorus (of which he’s still a member) from the beginning of the crisis in the ’80s. He said because of his intense involvement, he probably had a disproportionate number of friends and colleagues who died of AIDS. He relies on his creative work to help him cope with loss and grief. He’s written a solo show, a yet-to-be-published novel, and countless articles and published a blog. Ward explained that writing has been a great outlet for him.
“For me, writing about it has been part of that experience: to be able to write about it, not forgetting,” Ward said. “I have friends who also went through the same time period as I did, and they don’t want to think about it as much. Their choice has been to move on. And, of course, I want to move on as well. But for me personally, the past is important. The past is prologue. If we don’t remember the past, then we’re doomed to repeat it, as the saying goes.”
Ward is also a member of a writing group that brings together people living with HIV to record their experiences and histories. “People who were diagnosed before ’96 really have an urgent need to tell the stories because it was a very short period of time that HIV came out before the cocktail [of effective, multi-class HIV drug therapy became available],” he said. “Many of us are older, and we’re not going to be around forever, so we really want to get those stories out.”
The experiences of long-term survivors matter, not only for their historical value, but also for the connection with community. “The importance of telling our stories for anybody in any of the realm of HIV-positive-or-not spectrum is just so important,” Ward said. “And listen to those people who want to talk about it. We really want to tell those stories, and we love it when people listen.”