National HIV/AIDS Long-Term Survivors Awareness Day

Let’s Kick ASS—AIDS Survivor Syndrome is the lead sponsor of the annual National HIV/AIDS Long-Term Survivors Awareness Day 2015 was amazing. We are making plans for much bigger commemoration this year. Yes, we are already planning it.

Watch this space. Let’s Kick ASS goes public.

 

 

 

 

 

Let’s Kick ASS—AIDS Survivor Syndrome is a U.S. 501(c)(3) non-profit organization.

NHALTSADNational HIV/AIDS Long-Term Survivors Awareness Day

A Day to Call Our Own

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.”

To learn more visit on the web at NHALTSAD.org and LetsKickASS.org

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

Twitter: @AIDSsurvivors and @LetsKickASS_org.

 

 

 

 

NHALTSADA Day to Call Our Own

ABOUT LONG-TERM SURVIVORS AWARENESS DAY

The first-ever National HIV/AIDS Long-Term Survivors Awareness Day (NHALTSAD) will be held on June 5, 2014. This day commemorates the profound experiences and unique issues of long-term survivors, both HIV-positive and negative, who are still alive despite the devastating toll from surviving the most significant epidemic of our time. Let’s Kick ASS—AIDS Survivor Syndrome is the lead sponsor and organizer for this AIDS observance day. This year’s theme, “We’re Still Here,” reflects the strength and resilience of the generation of survivors who lived through the darkest decades of the AIDS epidemic—the 1980s and 1990s. The We’re Still Here Campaign continues the work of Let’s Kick ASS by focusing on the lives of long- tem survivors. By optimizing self-empowerment, increasing visibility, and ending stigma, NHALTSAD puts long-term survivors on the AIDS agenda. Our goal is to empower survivors to find meaning and purpose amidst the rubble of lives so terribly impacted by AIDS.

Let’s Kick ASS PSA featuring National HIV/AIDS Long-Term Survivors Awareness Day June 5 from Let’s Kick (ASS) on Vimeo. We find ourselves in uncharted waters. NHALTSAD is especially urgent now as the CDC reports that there are an estimated 60,000 Americans who have been living with HIV for more than 25 years. AIDS Survivor Syndrome (ASS) and post-traumatic stress (PTS) among survivors is very real. Long-term survivors feel forgotten and increasingly hopeless. Some are ending their lives rather than live on with survivor’s guilt, depression and anxiety associated with post-traumatic stress.

This observance day occurs on the anniversary of the first published report of what came to be known as AIDS. On June 5, 1981 the CDC’s Morbidity and Mortality Weekly Report (MMWR) published a brief account of five young gay men that had been diagnosed with Pneumocystis carinii pneumonia (PCP), indicating signs of severely compromised immune systems. That report sent huge shockwaves throughout the LGBT community and eventually, around the world. The time has come to talk about what it means to be a long-term survivor. We are asking the media, community groups and AIDS service organizations to find ways to highlight individual stories of survival.

On NHALTSD, in San Francisco, Let’s Kick ASS is holding the first AIDS Survivor Summit, a health fair with workshops, presentations and materials tailored to long-term survivors. It will be an event created by, for and about long-term survivors.

Other jurisdictions are encouraged to acknowledge this day in ways that feel significant to them. It could be as simple as hosting a potluck in one’s home or as large as putting together a town hall meeting where numbers of survivors can come together. The important thing is to honor the experience and losses of long-term survivors and work towards a productive future. For more information and a calendar of events coast-to-coast please visit www.NHALTSAD.org

To have your event listed, please send an email to AwarenessDay@LetsKickASS.org and we’ll add you to our national calendar.

 #NHALTSAD #LongTermSurvivors #AIDSSurvivors #WereStillHere

Twitter: @AIDSsurvivors

Facebook: https://www.facebook.com/NationalHIVAIDSLongTermSurvivorsAwarenessDay

Thunderclap: https://www.thunderclap.it/projects/8932-long-term-survivors-day-jun-5

Twitter: @LetsKickASS_org

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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. www.LetsKickASS.org

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Info About NHALTSAD

Let’s Kick ASS is the lead sponsor and organizer of the first-everNational HIV/AIDS Long-Term Survivors Awareness Day on June 5th, 2014 spotlighting the needs and realities of those longest affected by the AIDS epidemic.

Our theme for this first awareness day is “We’re Still Here” which speaks to the resilience and tenacity of long-term survivors who lived through the darkest days of AIDS.

With courage and compassion, they survived the darkest days of the AIDS epidemic. Without access to effective treatments, we were forced to rely on each other and ourselves. As individuals and a community, we exhibited strength we didn’t know we had.

On June 5th National HIV/AIDS Long-Term Survivors Day we are calling on our community to come together again to face the conundrums of midlife and aging to envision our future.

This nationwide grassroots forum is the first Bay Area forum by, for, and about survivors both HIV-postive and negative. Though the effects of living with HIV are more challenging we acknowledge that there were caretakers, friends and lovers who remarkably remain negative through this crisis. They deserve recognition too.

We all have valuable lessons to teach our community and the world about living and survival—it’s time to embrace our role as elders, teachers and leaders.

Let’s Kick ASS is the lead sponsor of the day but we want community groups, individuals and AIDS service organizations everywhere to commemorate the day in ways that are fitting for the people in there communities.

 

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