News :: AIDS

June 5 is the First National Long Term HIV Survivors Day

by Winnie McCroy
EDGE Editor
Wednesday Jun 4, 2014
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Tez Anderson wants long-term survivors to begin looking to the future
Tez Anderson wants long-term survivors to begin looking to the future  (Source:Courtesy Tez Anderson)

In 1983, while he was still in his 20s, Tez Anderson found out that he was HIV-positive. Although doctors told him he only had two years to live, somewhere along the way he turned 50. Faced with the prospect of a future he hadn’t planned for, Anderson fell into a deep depression. When he finally realized that he wasn’t the only one dealing with "AIDS Survivor Syndrome," he started Long Term HIV Survivors Day, the first of which will be held on June 5.

"What I hear most is that I’m not the only one," said Anderson. "I thought I was going crazy, and was ashamed of it. But once I began talking about my experience, I realized I was on to something."

Anderson’s downward spiral came with depression, insomnia and a lot of anger. He was online planning out his suicide when he discovered that his symptoms were a lot like PTSD. He called it AIDS Survivor Syndrome (ASS), and soon, many other long-term survivors began sharing similar stories.

"Part of my breakdown was that I was such an asshole about it, I had alienated all of my friends," said Anderson. He called up a few that he had worked with in ACT Up years before, and they helped him throw a Town Hall event in San Francisco last September.

"I invited those we knew to talk about their experiences," said Anderson, "and 200 people showed up. It was like they were at a revival! There were a lot of people who were HIV-positive, but also many who were HIV-negative, who were dealing with the trauma of losing all of our friends and lovers for two decades. The first 20 years of AIDS were devastating to our community, and you didn’t have to be positive to experience that loss and repeated grief."

Anderson kept throwing events, including a public poll, programming, a social, meditation, weekend retreats and four more Town Hall events. He witnessed people like him, transformed by the knowledge that they weren’t alone in this.

"A large percentage of my cohorts were very isolated, very much angry, and then quiet. They became recluses," said Anderson. "Some of these people were scared to come to the big events, so they came to our Saturday morning coffee, where there are only about a dozen people. They might not say anything at first, but soon, they are ready to come to a Town Hall, and then to volunteer, and then to come out of their shell. A substantial number of people participated, and experienced a lessening of their symptoms."

Anderson created a website for the event and last month, filed paperwork to make the organization a non-profit. And now, he is calling for others across the country to come together and plan their own Long-Term survivors day, under the theme of "We’re Still Here."

"I encourage people to do what’s appropriate for their community," said Anderson. "The first-ever national Long Term Survivors Day is planned for June 5, because this was the date in 1981 that the Morbidity and Mortality report was released that first noted HIV. We chose that day as the day that AIDS awareness began."


AIDS Survivor Summit

In San Francisco on June 5, Anderson and his team will hold the inaugural AIDS Survivor Summit at their LGBT Center. The event is free, but tickets are required; click here.

The event will commence at 10:45 a.m. when buses will pick up participants from the Castro and transport them to the National AIDS Memorial Grove. Once there, Gregg Cassin will host the Healing Circle Ceremony, honoring those lost to the epidemic and committing to envision the future they never imagined. Dignitaries will share speeches, and there will be a tree planting ceremony to honor survivors.

At 12:30 p.m., they’ll depart the Grove for the AIDS Survivors Summit at the San Francisco Gay Center. A day of talks, information and special events is planned.

A Community Expo will be held on the second floor, featuring Bay Area AIDS organizations sharing information about they way they serve, or plan to serve, long-term survivors -- defined as those who came of age in the 1980s and 1990s, when the community around them was under siege both HIV-positive and negative.

There will be food at various intervals, and in the evening, staff members will host a pre-Pride social to strengthen community through connection. In addition, the HIV Story Project will bring Generations HIV, an interactive video storytelling booth, to the Center from June 5-21 to capture the stories of long-term survivors.

"It is a day to celebrate our survival and begin envisioning the future we never imagined," said Anderson. "The first decades of our adulthood were overwhelmingly consumed with illness, death and fear. Now it is up to us to ensure that the next decades are the best they can be. The least we can do is afford survivors the respect they have earned and acknowledge them as elders, teachers and leaders."

Anderson is asking long-term survivors to consider how they want the next years to look and to begin laying the groundwork for it now. On June 5, they will work under the mission statement, "Let’s Kick Ass," and fire up a grassroots movement of long-term survivors, positive and negative, honoring the unique and profound experience of living through the AIDS epidemic. On that day they will unveil a new long-term survivor declaration and call for national sign-ons.

"We’re dedicated to reclaiming our lives, ending isolation and envisioning a future we never dreamed of, while paving the way for a bright and purposeful future for those of us who endured such a painful past," said Anderson.


Events to Be Held Across the Nation

The movement that Anderson started in San Francisco has already caught on in New York and Portland, Oregon. In New York City, Acria is observing June 5; in Portland, survivors will gather at Hobo’s Restaurant and Seattle will hold a potluck
meet and greet at the Bastyr Immune Wellness Clinic.

And in Grinnell, Iowa, survivors will observe the inaugural Long-Term HIV Survivors Day at the closing of the first-ever HIV is Not a Crime Conference at Grinnell College June 2 to 5.

"I commend Tez Anderson and all the long-term survivors in San Francisco who have initiated and developed this long overdue commemoration of those of us who have lived with HIV for so long," said Sean Strub of the SERO Project. "There is a unique wisdom long-term survivors have earned, the hard way, and too often we have been cast aside, ignored or treated like freaks simply because we’re still here. Recognizing and valuing what we have learned and what we can contribute to combating HIV today is very, very important."


For more information, visit http://aidssurvivorssummit.org or https://www.facebook.com/AIDSSurvivorSyndrome. To volunteer, email Vince@LetsKickASS.org

Let’s Kick ASS PSA featuring National HIV/AIDS Long-Term Survivors Awareness Day June 5 from Let’s Kick (ASS) on Vimeo.

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Winnie McCroy is the Women on the EDGE Editor, HIV/Health Editor, and Assistant Entertainment Editor for EDGE Media Network, handling all women’s news, HIV health stories and theater reviews throughout the U.S. She has contributed to other publications, including The Village Voice, Gay City News, Chelsea Now and The Advocate, and lives in Brooklyn, New York, where she writes about local restaurants in her food blog, http://brooklyniscookin.blogspot.com/

Comments

  • Anonymous, 2014-06-06 02:05:41

    National HIV/AIDS Long-Term Survivors Awareness Day Seattle, June 5 We who are of a certain age - we are all children of the plague. Whether poz or neg, those of us who’ve survived these thirty years - we have all lost at least some of these: friends, family, community, career, youth, future, health. And we’ve also lost at least some part of these, even more valuable things: our minds, our hope, our souls. Now our plague has become a "manageable condition", and some around us are wondering: what was all the fuss about? There is no way to tell them what it was like to be at ground zero, let alone what it was like to remain there for decades. All we can do is tell ourselves that, whatever part we played in the drama, we did what we could. It was all we could do. And that was the best we had. We tell ourselves this despite the huge ironies which confound us. The irony of surviving thirty years while living day-to-day, unable to plan beyond a six-month to two-year plan. The irony of outliving healthier friends and younger lovers. The irony of being on the front lines of sexual freedom in our teens and twenties, only to turn into pariahs and lepers in our thirties, forties and fifties, and then to subside into sexual and social irrelevancy in our aged days. Those very same days which we struggled so mightily to hang on to. Some of us ask why, and get no answer. Some of us just go on, regardless, not knowing what else to do. Some cling to the flotsam and jetsam of the lives we once had, some flock to newfound philosophies, some to things we only pretend to believe in. In the end, there is only this to be said: from out of a withered and bleak landscape we have claimed and kept some small piece of life as our own. And so, for whatever it may be worth, we’re still here. Jack John Hall? Seattle


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