I’m Still Here
A long post — —
“Not everyone dies from AIDS. Many of us are alive and well and living …. everywhere where AIDS has reared its ugly head. The uncritical repetition of the myth that everyone with AIDS dies denies the reality of–but perhaps more importantly, the possibility of–our survival.
So, despite the distorted picture of AIDS passed on to journalists by researchers, the reality was that everyone was not dying from AIDS. It especially became clear over time that people whose only opportunistic infection with Kaposi’s sarcoma were often able to lead quite normal lives and were surviving significantly longer than other people with AIDS. But for whatever reason, these seeds of hope never gestated in the public consciousness.
The uncertainty about my own “right” to claim that I have AIDS–and that I’m a long-term survivor–has caused me a great deal of pain. When I’m “good,” when I tow the party line and talk about my feelings, no one questions my right to represent myself as a PWA. But when I’m “bad,” when I insist on talking about science or politics, some of my critics claim that I have no right to speak as a PWA. Frankly, I can’t fathom why anyone would pretend to have AIDS. There are easier ways to be photographed with Liz Taylor.
What has it meant that hope has been so long denied? I suspect that it has had murderous consequences on two levels. If there’s a biologically definable will to live, it probably requires hope to sustain itself. The media’s obsession with death and dying may have suffocated the spirits of countless people with AIDS.
“I’m not immune to the reinforcement of hopelessness that surrounds me. That reinforcement causes despair, and I believe that despair kills people with AIDS as much as any of AIDS’ physical manifestations.”
Those of us who’ve insisted on the possibility of surviving AIDS have been patronized, handed Kubler-Ross, sent into therapy, or faced the charge of AIDS dementia. Those caring for us could humor our illusions and ration out their emotional strength, certain that, however draining, however horrible it is to watch the progress of AIDS, the end was inevitable. Admitting the possibility of survival will mean that people around us suffer the disappointment of our hopes along with us in a new way. If death from AIDS is not inevitable, then each death is uniquely painful. And each struggle to survive is uniquely empowering.
Although I’m winded from five and a half years (for me it’s been 34 years on July 16, 2024) of more or less peacefully co-existing with AIDS, I must now readjust to the possibility of lymphoma. Even in dark moments, when doubt and hopelessness threaten to overwhelm, I am aware of an almost palpable will to live. The preciousness and exhilaration of living overwhelm.”
Michael Callen in 1988
I realized today some could consider me a rarity if you will. A survivor. Even a Long Term survivor of AIDS. Truth is at 34 years with the disease there is some truth to that. With that comes a price that is paid. That concerns about my “health” cloud your decision to consider me for anything from the mundane to the big events. It hurts like hell. Like my survival means nothing! That you can’t risk whatever it is you feel is at risk considering me for anything. I was overlooked for selling shoes at goddamn Macy’s for heaven’s sake. We NOT aren’t talking about brain surgery here. It’s just seeling flipping shoes, for heaven’s sake! “We’ve decided to go in another direction in our hiring.” Like ok, whatever, girl!
Honestly, it has been the invisibility I have felt that I’ve battled for three very long years. Feeling like I’m no longer needed. That I paid my dues, it’s time to move on. Let someone else take over. Becoming Mr. Cellophane, if you will:
No matter what it has been the answer has always been dead silence. from being someone’s Drag Mother, or doing podcasts about the pioneers of the LGBTQIA+ movement that have been forgotten, and even a mural project. All leading to nothing. Repeatedly begging to help in many causes, many issues, many organizations… and zippo!
The issue is there is, in my humble opinion, so much work to be done on so many fronts that I see…. and maybe I’m not aware of all the work that is being done…. or the people who are doing it. I see a huge need that I know I can fill. For some reason, reaching out to so many on so many things just ends up with dead ends and I’m left beyond frustrated. LGBTQIA+ Senior rights and issues, Trans rights, and the fight against the evil trying to stop letting us live our lives as OUR lives, Long-term HIV/AIDS Survivors, and our health issues as we age!
I have felt incredibly lucky for having lived this long, and my health is what it is. I religiously take my meds, otherwise I wouldn’t be here to begin with. Battling Kaposi Sarcoma not once, but three times; when years ago you did not survive one round of KS. I feel like I have SO much to give, but it also seems no one wants or needs anything and the one time I let my guard down and asked for help when I truly needed it I ended up burned big time.
But what has happened? I’m not sure what the issue is… but it’s gotten old quickly… to have to keep begging to be involved only to be ignored. Maybe I’m asking the wrong people. Maybe the timing isn’t right. Maybe a dear friend is right that it’s ageism. But seriously what do I have to do? Forty years in activism, 40 years in drag, 34 years living with AIDS, starting and running a big non-profit for 10 years, countless meetings with legislators, congressmen, and a former Vice President for god’s sake; I’d think if you’re an LGBTQIA+ business or non-profit organization you’d kill for someone with my background. That, sadly, has not been the case. WHY? I wish I truly knew.
“If death from AIDS is not inevitable, then each death is uniquely painful. And each struggle to survive is uniquely empowering.” Michael Callen got it right here. The struggle to survive. Maybe that is a post in itself? As well as an honest conversation about that pain. Maybe part of that is in this post. Maybe, this can be the true start…
If you’re with an LGBTQIA+ organization or business reach out. I’m open to advice, support, and even job offers.
