This was recently published in POZ magazine. You can read it by going here: http://www.poz.com/articles/tez_anderson_2676_25646.shtml
A Day to Call Our Own
Poz Op-ed. By Tez Anderson
It has been 33 years since the CDC first announced the mystery illness that would come to be known as HIV. For the next twenty years AIDS would hit the gay male community hard. As a community we would care for and bury hundreds of thousands of our loved ones. Without effect treatments, thousands of us became caretakers while preparing to die ourselves. It was a traumatizing time.
So why are the survivors of the HIV epidemic treated like the Rodney Dangerfields of AIDS—we get no respect? Everyday there are stories in the media about survivors, someone who, despite the odds, survived something horrific. Think about the reverence with which we view survivors of the Holocaust. Then think about how survivors of the AIDS epidemic are regarded. Most of my fellow survivors feel invisible and forgotten by their own community. Owe it our perpetually youth-obsessed culture. We are not in the zeitgeist. It is time to change that.
On May 25 HBO premiers the film version of Larry Kramer’s play The Normal Heart set in the early days of the plague. Eleven days later, on June 5, 2014, Let’s Kick ASS—AIDS Survivor Syndrome is starting the first-ever National HIV/AIDS Long-Term Survivors Awareness Day (NHALTSAD.org). That day is the thirty-third anniversary of the first CDC announcement of AIDS.
The theme for this inaugural observation day is “We’re Still Here” reflecting the resilience and determination of a generation of survivors who lived through the darkest decades of the AIDS epidemic—the 1980s and 1990s. It is a day to celebrate our survival and begin envisioning the future we never imagined. Our twenties and thirties were consumed with illness, death and fear. It is up to us to insure that the next twenty years 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.
We are not limiting the term “long-term survivors” to those who are HIV-positive. We recognize that we could not have survived without the caretakers, friends and lovers who remain HIV-negative. They are survivors of the AIDS epidemic too. They are largely overlooked and taking care of their psychological health is crucial to keeping them negative.
Our goals for that day are embodied in our mission statement: Let’s Kick ASS is a grassroots movement of long-term survivors, positive and negative, 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.
We have some psychosocial hurdles as survivors that we need to clear. The concept of AIDS Survivor Syndrome (ASS) is new and it has not been studied nor recognized. I know this because my journey as a survivor involves a very dark, confusing time. After living with HIV for 25 years I came unglued. Nothing made sense. I was going crazy. It often felt like I was trying to catch a waterfall with my hands. I had more questions than I had answers.
How had I lived this long? Why had I survived when so many of my loved ones and community had died? What was my purpose now? Why was it so hard to go from dying to living? Why the fuck had I not planned for retirement? With all the plans I made, living was among them. When my possible longevity sent me into a tailspin. I could only sleep with heavy doses of sleeping pills and I never felt rested. I was exhausted and acted out. I became angry and withdrawn while trying to pretend that nothing was wrong. My occasional bouts of depression grew darker and refused to lift. I started making plans to kill myself. I could not explain it to anyone because I didn’t understand it myself. My life had become unmanageable and eventually I contracted cryptococcal meningitis and nearly died.
I had spent years adjusting to the idea of dying. I made piece with dying as I sat beside my dying lover’s bed and gave him permission to go. When I was dying and everyone around me was dying I had a purpose. My crisis came I realized that I might live another 25 or 35 years. It also felt like we were being swept under the rug. People wanted to forget about AIDS and we survivors were reminders. But I took a handful of pills everyday to keep alive. AIDS was and is a daily fact of life for me.
Most mental health professionals treat depression, anxiety, sleep disorders as unrelated and not the natural response to a long, sustained trauma. Living with so much death while preparing to die young for a quarter of century fucks with your head. I remember the day that saw a piece on TV about vets and PTSD. I couldn’t stop crying. Could my reactions be post traumatic stress-related? After years of feeling out of control things began to make sense. My therapist thought I might be on to something. It was not until I began sharing my story that I realized that I wasn’t the only one stumped by survival.
Then in December of 2012 activist Spenser Cox died. After his death there we accounts that he’d stopped taking his meds. The treatments he’d help bring to market. He seemed to give up. He had helped our lives but no one could save him. His death occurred around the time of several suicides by long-term survivors. It was in response to those deaths and my own experience that I called two friends from ACT UP Golden Gate and started Let’s Kick ASS.
It started as an art project in my new long-term survivors group. Others painted, wrote and expressed his and her survival though the arts. I created a logo and learned to make a website. Let’s Kick ASS grew to a Facebook group. We just filed our papers to become a non-profit. I no longer take anti-depressants, sleeping pills nor Xanax for my anxiety. I now have a purpose—healing wounded AIDS warriors. We went through a war and some of us survived. I have a community again filled with people I love and who seem to like to me too. I’m too old to be this corny but damn if it doesn’t feel good.
I hope on June 5 and the rest of the year you’ll find ways to seek out survivors and listen to them. Do not just accept “I’m fine” when you ask, “How are you?” Listen to them. Acknowledge that they’ve come through the fire but they can dream and be happy. Sure there is still plenty to complain about and much work to be done. But on June 5 let’s just come together and say “Congratulations on surviving.”
If you in the Bay Area please join us for the AIDS Survivors Summit/San Francisco 2014 AIDSSurvivorsSummit.org.
We are also on Facebook: https://www.facebook.com/AIDSSurvivorSyndrome