You Want to See Resilience in Action? Look At These Guys!

Long-term HIV survivors show how to live with meaning, purpose, and wisdom.

Posted Jun 04, 2018

John-Manuel Andriote/photo
Source: John-Manuel Andriote/photo

What does it feel like to hear your community talk about how we supposedly “lost an entire generation” when you are standing right there, living proof that we did not?

“The meme ‘We lost an entire generation to AIDS' is wrong,” said San Francisco resident Tez Anderson, living with HIV since 1983. “We lost much of a generation but there are many of us still here, surviving against the odds.”

When Anderson in 2013 called for a meeting of the city's long-term HIV survivors, 250 showed up. In response, he launched an organization and grassroots movement he calls Let’s Kick ASS (AIDS Survivor Syndrome). The group is the lead sponsor of HIV Long-Term Survivors Awareness Day, observed on June 5 to mark the anniversary of the first reports on June 5, 1981 of what became known as AIDS. This year’s theme is “HIV: It Is (Still) Not Over.”

Michael Gottlieb, M.D., whose gay male AIDS patients in Los Angeles were among those first reported in 1981, says of Anderson and other long-term HIV survivors, “If you had HIV, you couldn’t go through a time as traumatic as the eighties and nineties without major life-changing ramifications. Depression, isolation, economic hardship, careers put aside—and a feeling that society had no idea what you had been through, and didn’t much care. Going forward it was dismissive of your relevance.”

Let’s Kick ASS not only affirms the relevance of long-term HIV survivors, but esteems them as exemplars of resilience, pioneers and community elders with important stories to share, history to pass along.

As with our personal stories, the stories we tell of our own, or our community’s, experience with HIV-AIDS can either uplift, or undermine, us, depending on how we frame them, the words and language we use in telling them. “How we view it is how we get through it,” said Anderson. Too often, he said, we focus on “all the ways we fell down” without telling the part about how we got back up again.

“I would like to get people to tell their stories of survival,” Anderson told me in an interview in San Francisco for my book Stonewall Strong, “lessons we’ve learned as elders of our community.” He pointed out that one of the most important lessons was, “Yes, it was awful but it also forged our community. We fought with a community spirit we had not seen since Stonewall.”

Whether we see victory or victimization depends on how we tell the story. “Some of us,” said Anderson, “seem to be stuck in how tragic and awful it was, and all they lost—instead of looking at the lessons. What were the nuggets of gold we got? I feel like I got so many.”

Ganymede, another long-term HIV survivor in San Francisco, also chooses to focus on the valuable lessons about life forged in the refining flames of the HIV epidemic. “I don’t really want to talk about the trauma and the pain I lived through,” he says at the end of Last Men Standing, the 2016 documentary by the San Francisco Chronicle about long-term HIV survivors in San Francisco, “partly because a lot of people don’t want to hear it, partly because it’s so painful. It’s important that story live on, but we don’t have to suffer through that story. We want to release that trauma and move on to living life. So while I want that story to not be forgotten, I don’t want it to be the story that runs our life. The story of the resilience, of the joy, of the happiness of surviving, of thriving, of learning what’s important and precious in life—that’s what I want to live on.”

Anderson also endorses, and lives, what I call the “heroic” version of the HIV-AIDS story. “We are world-class experts on surviving and thriving,” he said. “Thriving is a higher level for some people.” He said it starts by “embracing our survival, saying our experiences were profound, and in that profundity is wisdom.”

In that wisdom is a way of living with a sense of meaning and purpose. “I’ve turned my authentic experience into something that helps me and helps other people,” said Anderson, “and I feel good about my path on earth.” 

Anderson is clear about the price he's paid for this wisdom and clarity of purpose. “I would not have this experience if it had not been for confronting AIDS,” he said. He calls it a “privilege” to have confronted his own fear of dying and death while still in his twenties and thirties.

David Simpson, another long-term HIV survivor, clear across the country, in Portland, Maine, echoes Anderson and Ganymede’s observations. Simpson found out he had HIV back in 1984. Not only that, but he spent time in Peabody House, Portland’s AIDS hospice back then, expecting to die from AIDS-related complications.

“When I was at Peabody House,” Simpson told me in an interview, “I wasn’t as sick as some of them that were passing, who were in comas, and I would read to them.”

Today, years after his own Lazarus-like experience of coming so close to death and then being resurrected by effective medication, Simpson still takes care of people in his job at the Maine Medical Center, and his volunteer work at the Frannie Peabody Center, the state’s leading HIV services organization. 

“I still feel pain around missing people from my life, and always will,” said Simpson. “But I am grateful I am alive. I’m happy that I am one of the guys who survived and I am sorry for the ones who didn’t.” He added, “In the end it’s about helping other people any way you can.”

It's important to look back across the 37 years since AIDS was first reported, to recognize the multitude of ways HIV has devastated lives, communities, and entire nations, its millions of casualties and the millions more living with the life-altering awareness of mortality that a life-changing medical diagnosis thrusts upon us.

Because life is for the living who must carry on, it’s equally important to take our lessons and apply them as we go forward. Given all that HIV-AIDS has taught us about ourselves and our community, about life and love, I concur with Tez Anderson's assessment: “Stop calling our generation the ‘AIDS generation.’ Call it the ‘resilience generation.’”