Over the last 30-plus years I’ve lost hundreds of friends, acquaintances, and co-workers to HIV and AIDS. In the 25 years since I first tested positive and started treatment, I’ve developed strange maladies such as thrush, kidney sludge, and shingles. I’ve been poked, prodded and bled, started and stopped PCP prophylaxis, and made out living wills and medical powers of attorney. I’ve stood in protest and marched on Washington, walked marathons and participated in a bike ride. I’ve fallen in love, and broken hearts.
I’ve probably been on ten different drug regimens during that time, which most likely saved my life but definitely have taken their toll. My viral load is undetectable, and my CD4 T-cells and CD4 percentage are near what a normal, healthy HIV-negative person my age might be expected to have. But as the population of people living with HIV and AIDS ages, we’re beginning to understand that there is much more to the story than simply numbers and percentages. Underneath the surface of the syndrome we know as AIDS lies a darker and much more sinister enemy. Those of us who have come through the fight know that enemy intimately, and we have the battle scars to prove it. But we need new tools and weapons
to fight it.
I was first diagnosed with post-traumatic stress disorder (PTSD) shortly after I tested positive in 1989 and went into psychotherapy. PTSD, as defined by the Mayo Clinic, is a mental health condition that’s triggered by a terrifying event—either experiencing or witnessing it. Not everyone who experiences the event will develop PTSD; they may just have difficulty coping for a while, but eventually they’ll adjust and get back to their “normal” life. It’s only when symptoms (which can manifest as intrusive memories, avoidance, negative changes in thinking or mood, or changes in emotional reactions) start to cause significant problems in social or work situations and relationships, that it becomes a more serious issue.
While my PTSD was related to childhood sexual abuse, it was triggered by living through a holocaust and ending up testing positive myself. The disorder was no less real to me, however, and I still struggle with the effects to this day.
That’s why I was simultaneously elated and deflated when I read some of the many responses to our last poll question (see previous page). We asked individuals what are the three most important issues facing long-term survivors, and I identified with many if not all of them. As I pored through the 10 or so pages of comments, the words loneliness and isolation came up over and over again. I kept thinking to myself, what can we do? How do we reach them and let them know they’re not alone?
In this issue of Positively Aware you’ll meet some of the people who are reaching out, and taking matters into their own hands. People like Tez Anderson and Matt Sharp, two amazing individuals who’ve been through the battle and somehow made it out alive, and who are now using what they’ve learned to help their fellow warriors, who often feel alone and voiceless. You’ll hear from Rick Loftus, HIV activist-turned-physician/researcher, and read about some of the pioneering work he’s spearheading in the area of HIV and aging. Activist and author Nelson Vergel talks about the price we’re paying for having survived, and the need for special services for AIDS veterans. And long-term survivor and advocate/speaker Maria Davis tells us in an interview how she uses her own story to help others, and to let them know there’s hope.
As many people pointed out in response to our poll, our doctors, friends, and family often expect us to just be grateful to be alive. But if being alive means a lifetime of depression, isolation, stigma, survivor’s guilt, crippling side effects, and fatigue—just to name a few—it seems reasonable to question if it’s worth it.
Just as veterans returning from war may have difficulty re-assimilating, long-term survivors of HIV/AIDS can often feel out of place and useless. We need to be sure that we pay respect to our own soldiers, and let them know we appreciate all that they’ve been through. We need to set up programs and services designed and tailored specifically to our own unique needs as AIDS veterans. It’s time for us to create the structures and support systems that will help our veterans financially, mentally, and physically, well into their golden years. They—we—deserve no less.
It’s necessary to hear and share these stories, for they define a generation. We have the opportunity to learn from our past, and to mentor and teach an entirely new generation—while honoring our history, and the fallen.
Take care of yourself, and each other.