The First Generation to Age With HIV: Taking a Look at Long-Term Survival
June 5 marked 35 years since AIDS was first identified in 1981. It is now HIV Long- Term Survivors Awareness Day. A long time ago, I tried to think positive about living positive by putting my headphones on, listening to Louise Hay and her soothing voice, and imagining myself as an old lady with gray hair talking about what it used to be like back in the day when people died of AIDS.
Hard to believe that what was once a guided meditation and visualization is now a reality. All that positive thinking worked -- along with some medical breakthroughs that I began taking in 1995, as my health began to decline, and that saved my life. I'm still here -- healthy and living with HIV, and even cured of hepatitis C.
Recently I was invited to attend the screening of a new documentary, Desert Migration, at the Los Angeles LGBT Center. I had the honor of participating in a panel discussion facilitated by John Jude Duran, a member of the West Hollywood City Council, along with Phill Wilson of Black AIDS Institute, as well as Eric Jannke and Doc Duhon, two of the subjects of the documentary. Desert Migration features an ensemble of 13 men who are HIV long-term survivors living out their sunset years in the Southern California desert city of Palm Springs.
Being with the boys, now men, is home for me. I am the straight girl in a queer world, so this was not unusual for me -- though I have certainly participated in events that focus on positive women. We fought the same battle in those early years of AIDS. We often lived in the same neighborhood in the West Village in New York City and remember the same places, like 9th Circle, or even the darker sex clubs, like The Anvil and the Morton Street pier. In other words, we have a lot in common -- though it's easy to see the differences since I'm a Jewish straight girl!
This brings me to the first question directed to me by Duran: "So Sherri, how was it watching this movie and being the only woman [here]?"
A good question, since there were a lot of nude men and intimacy, with lots of frontal going on! In the old days, in my 20s, I wouldn't have blinked, but it's been decades now, and I must admit it was revealing -- and a bit uncomfortable at times. I'm familiar with the lives these men have lived, but mostly I could identify with the damage HIV has had on our lives. We were forced to come to terms with death and accept our lost years, careers and incomes -- only to find we had survived and are now graying with HIV.
That is good news. However, it is difficult to grasp, as we take a collective look at where we've come since before HIV treatment worked so well.
Taking medications is the norm for us in our daily lives, and that's on display in this movie. It's also difficult when you get the perspective of what life has been like for us, such as the amount of pills and the daily regimen to stay fit and fight side effects from years of medications. It's not easy, and this movie is an important education for those that think HIV isn't that big a deal anymore. They'll see a lifestyle to which people living with HIV have become accustomed. For many, there are still lots of pills (though I only take one a day), and the challenges of living on Social Security disability checks when you're in your later years. It's very real.
The desert is a perfect setting for this story. It's desolate and still, mysterious and powerful -- much like the survivors of AIDS. Only one of the men featured in this documentary couldn't survive his depression due to what became a loveless, isolated and lonely life. It is terribly sad to have come all that way -- surviving, living with HIV -- only to find life is too unbearable at his advanced age. Yet most thrived; they were happy, partnered and living a quality life with HIV.
This film follows these men who migrated to Palm Springs and found an affordable and less-stressful lifestyle compared to urban living. They lived in a thriving gay retirement community, with HIV medical services, 12-step meetings and even new careers in the healing arts. Love does win after years of loss.
I can't say it was uplifting, but I found it an honest look into what long-term survival looks like, at least for gay men. But I also wondered: what about women? How are their lives aging? What does that look like for them?
There was no way to know what our lives would be like 30-plus years after the plague, since we are the first generation. Now our themes are "The Graying of AIDS," "Aging With Dignity" -- and my story of long-term survival, which is part of "Well Beyond HIV."
[Editor's note: Sherri Lewis is a contributing writer to the Well Beyond HIV campaign, which is managed by Walgreens.]