When Tez Anderson called a town hall meeting of long-term AIDS survivors on September 18, he didn’t know quite what to expect. What he got was a room packed with nearly 200 people—HIV positive and HIV negative, men and women—who had experienced first-hand both the tragedies and the bonds of the early epidemic.
And it felt like home.
“There were people there I hadn’t seen in 15 years,” Tez says. “I heard people saying to each other, ‘Oh my god, I haven’t seen you in so long!’ There were hugs. It felt like a family reunion. It was really very moving to see people wanting to connect again.”
Lack of connection, withdrawal, social isolation: All are aspects of what Tez calls “AIDS survivor syndrome.” Other common symptoms are depression, anxiety, and feelings of “survivor guilt.” In launching the new grassroots group Let’s Kick ASS, Tez hopes to reconnect and re-energize people who survived the epidemic’s devastating early days, only to feel their lives had stalled.
For some, those first decades of AIDS were simultaneously tragic and heroic, with activists radically changing medical and research institutions from the ground up and individuals uniting to support each other and care for their dying lovers and friends. “We had a community that came together and took care of our own when no one else would do it,” says Tez. “That is worth all kinds of Purple Hearts.”
But with the advent of “drug cocktails” that at last slowed the disease’s progress, people like Tez suddenly found themselves with unexpected time on their hands, facing an uncertain future.
Tez tested positive for HIV just a month after moving to San Francisco from Georgia , his home state. “I was 26 years old, and I was told I had less than two years to live.” It’s a common story among people of his generation, he reflects. “Every two years, you’d get a reprieve and be told you had another two years.”
After a decade of these “two-year life sentences,” Tez asked his doctor to stop telling him he was going to die. “I know he had lots of patients who were dying—survival just wasn’t on the table then—but that prognosis didn’t permit me to make long-term plans,” he explains. “I’m 54 now. If I had known I would have to retire at some point, I would have planned for that!”
“I was really well prepared to die,” he says. “It’s just, I didn’t really plan to live.”
That gets to the heart of what Let’s Kick ASS is determined to do in the long-term survivor community. “My whole generation, that’s our story,” Tez says. “If I could do anything, it would be to help people realize that we have 20 or 30 more years of life, and we have to make them the best years we can.”
Tez’s vision is clear in the group’s mission statement: “Let’s Kick ASS is a grassroots movement of long-term survivors honoring the unique and profound experience of living through the AIDS epidemic. We’re dedicated to reclaiming our lives, ending isolation, and envisioning a future we never dreamed of.”
This mission is all the more poignant for the pain and struggle that informed it. “I lost a lover in 2000,” Tez recalls. “He was 36, and he was dying for months. On the last night he was alive, he opened his eyes and asked me, ‘Do you know how much I love you?’ I said, ‘I know.’ Then he closed his eyes, and for the next four hours, I just sat there and told him, ‘It’s OK to go.’ He was holding on for all the people around him. I gave him permission to die. And he did.”
“It was a transformative experience,” Tez continues. “It made me completely get over any residual fear I had of death. And it was after Gary died that I started questioning everything in my life.” Paradoxically, his lover’s death forced Tez to face the possibility of his own survival—and decades of life he had never prepared for.
The realization left him angry, depressed, anxious, and withdrawn. “I lost longtime friends,” he says. “They didn’t die this time; they left me because I’d become so unpleasant.” He became reclusive, and eventually even lost his job.
Tez likens his crisis to a wrecking ball. “When I realized what I’d done, and that I was alone in the world, I had to start rebuilding.” It took him a few years to get back on his feet, with the help of therapy and medication to manage his depression and anxiety. Another key factor? “I started telling people my story, and they said, ‘Oh my god, that’s my story.’”
Sharing experiences with other long-term survivors helped Tez turn his life around—and find a new purpose. “I talked with so many people who’d had a life crisis after 20 years of planning to die. That’s when I realized, this is something. AIDS survivor syndrome is a phenomenon that’s not being talked about.” When longtime treatment activist Spencer Cox died in 2012, Tez was galvanized.
“Spencer Cox helped get protease inhibitors streamlined”—a feat that helped make effective HIV treatment a reality in the mid-1990s—“but last year, he stopped taking his meds. I was talking to him on Facebook one day, and a few days later he was dead.” Cox’s death was deemed AIDS related, but many people, Tez included, view it as a deliberate choice. “That was a real wake-up call for a lot of people,” he says. “All these experiences came to a head, and I started Let’s Kick ASS.”
Fast forward a few months, to one of the group’s first town halls. After a handful of long-term survivors had shared their stories of AIDS survivor syndrome, Tez took an impromptu poll: “I asked the room, ‘How many of you have had similar experiences?’ And in that room of about 85 people, over half raised their hands.”
Let’s Kick ASS now hosts monthly town hall meetings, a “Real Faces of Long-Term Survivors” video project is in the works, and the next town hall, set for November 20 at the Valencia Gardens Community Room, will explore AIDS survivor syndrome through personal stories. Working groups meet weekly, including one focused on researching AIDS survivor syndrome and identifying survivors’ current needs and priorities. Tez also hopes to see the group launch studies of his generation’s psychological trauma—as well as resilience among survivors.
“We’re just getting started with what we’re trying to do, but I’d like to see us become the Veteran’s Administration for long-term survivors,” says Tez. “We went through a war with HIV and AIDS for so many years, and there’s no other group that’s taking care of those survivors.”
One unexpected hurdle has been finding meeting spaces for the group. “Our second meeting was at the Metropolitan Community Church in the Castro, and it never occurred to me how many funerals had been held there over the years,” Tez explains. “That was such a common place to go and mourn, or to celebrate someone’s life after they died, that it was a real trigger point for a lot of people.”
But for Tez, it’s important to respect those memories while also building new ones. “I think we honor those we lost by living our best lives now,” he says. “I think if they could talk to us, they would say, ‘Don’t sit around and be miserable because I’m not there. Live the best life you can live; that’s what I want for you.’”
It’s an idea that clearly resonates: Community response to the new group, Tez says, has been both humbling and energizing. “We’re getting such support. People want to help, people want to volunteer, people want to join us.”
And the timing couldn’t be better. “I hear a lot of long-term survivors say they feel invisible. I kind of understand how we might be invisible to 20-year-olds,” Tez laughs. Then he grows solemn: “But for god’s sake, we can’t be invisible to each other.” Tez sees the group as a vital resource for a community whose members are aging: “We can come together, we can do what we did in the early days of the epidemic and make growing old the same kind of bonding, community effort.”
“Let’s Kick ASS is focused more on the future and less on our past.” Tez says. “We had a long time to get to know death inside and out; now we have to figure out how to live.”
Learn more about Let’s Kick ASS and their upcoming events at letskickass.org. Have thoughts on the resilience, experience, and needs of long-term survivors? Share them in the comments below!