Currently in New York, nearly half of people living with HIV are 50 or older. During the time when most of them were first diagnosed, in the 1990s, the majority of them never thought they would live to see their 50th birthday.
“Suddenly the future seemed like this long, empty road going toward the horizon, and I felt like, what am I gonna do with my life now?” Steve Schalchlin, 59, told The New York Times. “I had already accomplished all my goals that I had set for myself. And now I had this endless amount of time ahead of me, and I felt depressed.”
For people from the first AIDS generation, survivor guilt and post-traumatic stress disorder are recurring themes in their lives. They are haunted by the deaths of others and uncertainty within themselves. This life that they were told wouldn’t be, in fact, is.
The 50,000 over-50 New Yorkers living with HIV experience a broad range of emotions. Some feel abandoned by their community, who seem to have forgotten about how the epidemic changed the world. They also are aware of being guinea pigs for science. Long-term exposure to HIV and the drugs used to treat it might have unforseen effects on the human body, and if it does, they will once again be in the first generation.
“I’m not going to die,” Osvaldo Perdomo, 52, told the Times. Perdomo, a former Liz Claiborne executive, quit his job after being diagnosed with AIDS in 2004. Dealing with depression, fatigue, anxiety and memory loss, he currently has $40,000 in credit card debt for his medication co-pays.
“Sometimes I feel, OK, I’m not going to worry about what’s going to happen 10 years from now,” Perdoma said. “I’m going to worry about today. But I’m running out of resources. When I went to the drugstore last night to pick up my medication, I was crossing my fingers — if this credit card doesn’t go through, I’m going to have to borrow money from a friend. What is going to happen when I’m 65? Are you going to grow up older and alone? Who’s going to take care of you?”
With the introduction of effective drugs in 1996, for many people, AIDS was no longer a death sentence. But surviving creates new challenges, including constant medical bills and anxiety, often faced without a support system: According to the city health department, almost three quarters of HIV-positive New Yorkers over 50 live alone.