Terry “Tez” Anderson is an award winning, nationally recognized long-term survivor activist, writer and speaker. Living with HIV since 1983, Anderson later founded and runs Let’s Kick ASS (AIDS Survivor Syndrome), the first and largest group in the world focused on improving the lives of those who’ve been living with HIV for decades and older adults aging with HIV. He served as a creative consultant on the award-winning Tales of the City miniseries that aired on PBS in 1994 and depicted life in San Francisco in 1976, but his connection to Tales — and their original author, Armistead Maupin — goes much deeper.
The two men were a couple at the time and a major character in the series was based on Anderson. In 1990 Maupin and Anderson were featured in People magazine as a serodiscordant couple — one of the first to speak publicly.
“That was a big coming out in a mainstream publication,” Anderson recalls.
Tales of the City was also groundbreaking. “It was this highest-rated show on PBS up to that point,” Anderson says. “It was also controversial. Some stations in the South refused to air it. We showed America things they had not seen before, like two men kissing, nudity, and pot smoking on public television.”
That contribution to LGBT visibility was critical to Anderson, a gay rights activist since “before it was LGBTQ,” he says, because “for decades my agenda was visibility.”
It hadn’t always been that way. Although Anderson had been out as gay since the late 1970s, he was a self-described “bar bunny” who just wasn’t into “silly parades.” That is until 1983, when he went to his first gay Pride in the West Village.
“As I got off the subway at Sheridan Square and saw all those queer people enjoying the sun and festivities, I started to cry,” Anderson remembers. “A few moments later I declared that I would become an activist.”
And he did. But by the 1990s, living with AIDS and the grief over those lost was starting to take its toll on Anderson and his relationships.
Today, as news swirls of a Tales revival (set in modern day San Francisco), Anderson says, “As proud as I am of that first Tales of the City miniseries, I am no longer associated with it. It was the fallout of my downward spiral at the worst of my AIDS survivor syndrome.”
It took hearing about Iraq War vets suffering from post traumatic stress disorder for Anderson to realize, “I was in the troughs of complex posttraumatic stress from years planning to die and not planning to live. The big crisis point for me came when I began wrapping my brain around the idea that I was not dying from AIDS, but living with it. I remember thinking, ‘Oh damn you might be an old man with HIV.’ It was the one thing I had not imagined and that sent me into a tailspin of depression, anxiety, and panic.”
Anderson says he alienated the people he cared most about, deepening his sense of isolation. “I fought the wrong things — my loved ones — and tried to deny, or run from, the enormity of that reality. The thing I would have done differently, that I still feel bad about, is not treat the people I loved the most so badly during [that time]. It was a long waking nightmare. I acted out and pushed away people I cared about.”
Now 57 and living in San Francisco with his husband Mark Ruiz and their Labradoodle Riley, Anderson says even after all this time, there are former friends who still think of him as “an angry jerk.”
It took realizing that he was suffering from the effects of trauma from all the illness, caretaking, and death while waiting to die before Anderson named the root of his problems: AIDS Survivor Syndrome. Doing so not only changed his life, but the lives of many other long-term survivors who saw their own grief and trauma in Anderson’s diagnosis.
Anderson says strangers thank him “for explaining to them what is happening to them. It is the first step to recovery. It is not that they are crazy; it is a human response to an unprecedented, sustained trauma.”
He believes AIDS Survivor Syndrome is “not as simple as PTSD, not just depression. It’s way more complicated and it is my mission to educate people and come up with an intervention to help those suffering.”
Before speaking at the International AIDS Conference in South Africa on the subject this summer he was “excited that I have an opportunity on a world stage to talk about this because it is real and devastating and I’m working on a groundbreaking intervention which I’m announcing soon.”
He credits the success of the HIV Long-Term Survivors Awareness Day — which he helped initiate in 2014 — with raising awareness about the needs of the 26 percent of people living with HIV who are long-term survivors. But he says there’s still a long way to go, not only in educating others about aging with HIV and surviving ASS, but in getting services and resources to people who will have long lives with HIV.
“There are many, many things I’d do differently,” says the aging Baby Boomer. “Probably the biggest thing is open a retirement account. I think one of the hardest things about being 57 years old and a long-term survivor is always being broke. If I could change one thing for the HIV long-term survivors I serve, I would lift them out of poverty. It contributes to [the] isolation, invisibility, and depression so many of us experience.”
Like Anderson, too many of those who survived the early days of the epidemic didn’t plan as though they would. “One of the big things I would have done differently is not spend 25 years thinking, It doesn’t matter, I’ll be dead,” he admits. “Why make plans or set goals? It was living on short timeline which didn’t prepare me for being 57.”
Issues related to HIV and aging will only increase over time, as the population living with HIV continues to age. As of 2015, Anderson says, over half of all people living with HIV in the U.S. are over age 50; by 2020, it will be 70 percent.
“We need as sharp a focus on HIV and aging as we give to youth and prevention,” Anderson insists, and he’ll stop at nothing to get it. l