Kicking ASS: Long-Term Survivors of HIV/AIDS Take Control of Their Destiny
In the three decades that our world has been affected by HIV/AIDS, we have seen a rollercoaster of delayed responses, community togetherness, activism, drug advancements, and continued new infections. Thankfully, today's epidemic stands in sharp contrast to the early days of AIDS.
Those who experienced the early years, however, describe it as a battle -- a war really -- one that claimed too many lives and left a community psychically devastated. For those who managed to make it out alive, especially those who are HIV-positive, life has changed dramatically. What once was a community of support has in some cases left these individuals feeling isolated and disconnected, as priorities in the HIV agenda have shifted. Many of these long-term survivors don't necessarily connect with what's currently happening in the HIV community, and frequently feel abandoned due to their being "healthy" and alive. But what many may not realize is that although these survivors are indeed alive, they aren't necessarily living with perfect mental health. Aside from most long-term survivors, a large percentage of the HIV community has failed to acknowledge that experiencing the traumatic events of the early start of the AIDS epidemic can be devastating, often resulting in serious mental ramifications.
After 25 years of living with HIV, Tez Anderson's life had begun to unravel to a point where he contemplated ending it all. "Learning that I was going to live caused more upheavals than learning I was going to die," he said. "I had spent a quarter of a century, over half of my adult life, 'dying,' and I had not planned on living."
Anderson seroconverted in 1983 at the brutal start of the HIV/AIDS epidemic, yet wasn't actually diagnosed until 1986 after moving across the country from Atlanta to San Francisco. A month before his 26th birthday, his doctor told him that he had less than two years to live. During this time period, there weren't treatments like today, and there certainly wasn't a lot of hope for those diagnosed. "I made plans to die," recalled Anderson. "I bought books on death and dying, and even purchased Louise Hay's book on hope, but thought it was the dumbest thing I'd ever seen, and didn't buy into the false version of hope she was selling, so I accepted my fate and made plans to die."
When Anderson hit age 45, he experienced what he describes as a "life crisis" -- he wasn't prepared to grow older with this disease that was supposed to take his life many years before. "I found myself terrified that I might grow old with HIV and I had not planned for it," he said. "I'd given up so many hopes and dreams as a young man because I was dying, so I felt bitter and very much duped."
Time passed, and Anderson's depression grew darker and more prolonged. He became detached and withdrawn, and continued to bottle up his feelings as the majority of his support system, including a number of his HIV-positive friends, had died. Although Anderson had managed to overcome the most difficult years of HIV, it wasn't without a struggle. "While I looked fine, I had few T-cells and painful neuropathy, and along the way I had PCP. I lived with 13 T-cells for eight years, I had viral meningitis in 2006, and there were the lesser signs of illness that in my mind signaled impending death -- thrush, weight loss, fatigue, etc.," he recalled. Feeling helpless without anyone who could understand what he was going through, Anderson continued to keep his struggles with HIV a secret.
In 2007, Anderson lost his job due to what he described as "mental stress." His friends and co-workers couldn't relate to what he was going through and most wrote him off as just being angry. "I remember being resentful that they thought of themselves as smart people but were clueless about the reality of my life," he said. Anderson was clearly suffering and at one point seemed to be having symptoms of neurocognitive disorders. He once again reached that dark place, and over the next four years became obsessed with killing himself. "I was depressed, anxious, angry, hopeless, and withdrawn, and spent nearly four years in sort of purgatory," said Anderson. "I had alienated most of my remaining long-time friends and 'family of choice' because I had become so ornery and such difficult company."
It wasn't until what seemed to be the lowest point in his life that something sparked while watching a news segment about post-traumatic stress and Iraqi war vets. "They ticked off all my symptoms," said Anderson and proceeded to list them out: "depression, anxiety, anger, loss of future orientation, hopelessness, sleep disturbance, nightmares ... and I began to cry."
What Anderson and many others had lived through was a war of sorts -- and this revelation is what triggered him to prepare for his next move in life, one that would not only affect him, but help countless others in the process.
Surviving a Plague
AIDS activist Spencer Cox died in December 2012, after he stopped taking his medication and is said to have given up. His death shocked treatment advocates. Distraught, they experienced a wake-up call as they hadn't had in years.
Cox wasn't the only long-term survivor giving up. "I lost a lot of my comrades when they turned to drugs and alcohol to try and cope," Anderson recalled.
Wanting to name the thing that was causing long-term survivors to kill themselves, rather than live with the trauma of the loss, grief, and survivor guilt, Anderson and his husband Mark Ruiz came up with AIDS Survivor Syndrome, and freely admits to the awkward acronym. "What we needed was a way to defeat it," he said. "I was slightly obsessing over this idea one morning and thought to myself, 'We need to kick its ass!'"
And in March of 2012, Let's Kick ASS (AIDS Survivor Syndrome) was realized by simply registering the LetsKickASS.org domain online. "When I started talking to friends and began reading reactions to Cox's death, I realized I was not alone, and it all became very real," he recalled.
Anderson was in good company as well. He was meeting with peers from ACT UP Golden Gate, including Matt Sharp, who became the co-founder of Let's Kick ASS (LKA) with him. "We eventually held a first LKA meeting with about 10 people and agreed to hold a town hall meeting to bring together long-term survivors, listen to their needs and concerns, and begin to confront and address the issues," said Sharp. The first planned town hall meeting brought together 250 people. Following is an excerpt from that meeting held September 18, 2013:
The Definition of Brave: "With courage and compassion we survived the darkest days of the plague. Without access to effective treatments, we were forced to rely on each other and ourselves. As individuals and a community, we exhibited strengths we didn't know we had. Now let's all come together again to face the conundrums of midlife and aging to envision our future. As survivors we 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."
The organization is dedicated to reclaiming lives, ending isolation, and helping long-term survivors envision a future that they once might not have dreamed of. It is raising awareness about the half-million people who came of age during the 1980s and '90s when HIV was considered a death sentence. It's their goal to address the psychosocial, mental, and behavioral determinants of health and illness among long-term survivors everywhere. Their focus is to help heal the trauma of those who survived the AIDS epidemic by bringing people together, building a community, and ultimately making their lives a little better, emulating the same togetherness that brought people together at the height of the epidemic.
LKA is now run by Anderson and Sharp in a small office in the heart of the Castro neighborhood of San Francisco, one block from where ACT UP Golden Gate once met on a weekly basis. LKA collaborated with the Shanti Project, a 40-year-old peer support organization for those living with HIV or other life-threatening illness, to secure funding for the new organization. Sharp is LKA's only employee, working part-time. Anderson is a volunteer, due to his disability status. In addition to the two co-founders there are other core members who help run the group and organize and plan for the larger town hall meetings. Additional volunteers help with other projects and office duties. LKA does not have a membership process; therefore there are no official members.
Let's Kick ASS is primarily focused on mobilizing the community of long-term survivors, both HIV-positive and HIV-negative, who survived the initial years of the HIV/AIDS epidemic. Coming together to address the many issues of long-term survivors is their top priority.
"Tez and I both experienced and felt many of these issues, but as LKA started mobilizing the community in San Francisco and all over the country, the recognition of these and similar issues has been seen all over," said Sharp. "We knew we had touched a nerve when so many people showed up to the initial town hall meeting, and people all over the country started contacting us once they saw our website and joined our Facebook page."
Together with their team, Anderson and Sharp have accomplished a tremendous amount in a short time. Beyond providing community support and outreach with their gatherings, meditation groups, and outings, in their first year they have held six town hall forums. They also organized the first National HIV/AIDS Long-Term Survivors Awareness Day (June 5, 2014), and a coinciding day-long summit. Additionally, they have helped establish a working group in San Francisco's city council that addresses the needs of aging HIV-positive seniors, and collaborated to create support groups for people age 50 and older in existing non-profit organizations.
Across the Country
"Because of the work we have done over the first year, we have started a movement that has begun to mobilize new chapters in Portland [Oregon] and other cities," said Sharp. "We began to make a place in history; we became part of the HIV/AIDS agenda that had previously been hijacked by the focus on at-risk HIV-negative populations."
Although AIDS survivor syndrome has not yet been officially studied, LKA is working to help change that, especially with regard to the resilience of survivors. "We have ample anecdotal information to let us not delay helping folks restore a sense of meaning and well-being," said Anderson. "People need help now and research is slow ... we know it's real as we get letters from people all over the globe, thanking us for validating their experiences." In the meantime, LKA wants to continue to raise awareness of the lives of survivors. "We are a diverse lot -- there are a lot of women and transgender survivors -- every gender, race, and sexual orientation," Anderson said.
In a short time, Let's Kick ASS has established itself as a much-needed resource and organization for many people living in San Francisco and across the country. "We hope to begin a national network, reaching out to other cities and jurisdictions that hope to begin their own LKA groups," said Sharp. And to help with that goal, they plan on traveling to several cities to help mentor those long-term survivors who are seeking organization. "There are so many lessons to be learned from long-term survivors, and we hope to teach as well as learn," said Sharp.
The Long Road
Unless you have personally lived and experienced it, it's hard to describe or understand what life was really like before the advancements in HIV treatments emerged. "We were simultaneously patients, caretakers, and warriors when we were young," Anderson said.
He and many other long-term survivors have felt marginalized in the most recent years of the HIV agenda, so many of them living in silence, confusion, depression, and loneliness. What Anderson and Sharp have created together has already changed lives, and will continue to do so as their message of community building and support continues to spread.