Johnny,
I just finished viewing “How To Survive A Plague” the brand
new documentary chronicling the work of ACT UP and TAG in the late 80’s and 90’s.
I did not make it to the premiere showing in Asheville recently and this movie
has been on my “watch” list ever since I learned of it.
Watching this documentary was an emotional rollercoaster. Brilliantly done and visceral.
I cried multiple times and was angry just as many instances as well. You came to mind so many times while I watched
this; this was a painful reminder of how much I have missed you. It’s a stark marking of the passage of time, of good and bad memories, love and regret, and
the possibilities that could have been had you survived and lived on. But of
course that is not what happened. I mourned your loss for a very long time and
the seeming unfairness of it all. One of the stars of the documentary remarked
tearfully that “we all go off to war and some survive and others don’t. Those
who come back often wonder why they live on and others don’t.” I understand
this to a point and at that moment I grieved for you once again. You’ve been
gone for such a long time and yet remembering this cut deeply.
You hid your illness from everyone, including me. I wonder how
long you knew before things spiraled downward. It’s certainly not a criticism
of how you handled your affairs. I respect the need and the right for privacy
and confidentiality. Although times have changed since you've been gone, the
stigma associated with HIV is still very real and potent. Knowing what I know now, I wonder if you had
let others, others who loved you dearly to assist and bear some part of the
burden you felt, I wonder if you might still be here. I cannot imagine the
isolation that I imagine that you felt.
Talking to Larry after you died, he indicated that no one knew and that’s
the way that you wanted to keep it. Larry said that you had been ill for some
time and that you wanted to keep this hush hush. And then Larry disappeared, mourning your
loss and dealing with his own HIV status. I've been unable to find him anywhere, and so I assume the worst.
I watched this documentary with mixed feelings. I
simultaneously viewed this film piece through multiple lenses, that is, through
the eyes of a gay man and also and up and coming public health professional. I wouldn’t
say that I was conflicted; I’ll say rather that I saw two sides of the same
coin. And I also have the benefit of hindsight and context. These activists did
not have this liberty, they were fighting for their lives and for the lives of
countless others. They certainly got the attention that they wanted. They
forced others to consider what was going on, they were very “in your face.” I
certainly don’t blame them. We were in the midst of a plague, and our very
government did not give it the attention that was needed or deserved.
Politically, there was no political will to make any changes or concessions in
AIDS research. The topic itself was taboo as it revolved around issues of
gender, sexual orientation, sexuality, morality, intimacy and presentation.
That is, the populations first affected were not groups who were part of the
dominant culture and were suspect in areas of behavior and moral and social
standing. Religious fascists were quick
to claim that this was a just retribution from God Almighty, proof that anything
other that heteronormative roles/orientations/couplings were sinful and against
nature itself. No wonder people hid who they were. You are aware of my own struggles in living authentically and my journey in getting there.There was open hatred and
prejudice. There was violence. There was
talk about branding us and separating us from the general population so that we
would infect one another and die off. So much for love thy neighbor as thyself.
Some folks are better educated about it now, but sadly the stigma, prejudice,
and violence still remain. I am still
angry at these things. Foul and despicable folks like Jesse Helms and Anita
Bryant still make me shouting angry. I yelled at the television screen during
the documentary; I know you would have done the same.
It’s a fucking virus..a strand of RNA enveloped in a lipid membrane. That’s it. It doesn’t care about
sexuality, color, social standing, religious creed or whether you take it up
the ass or vaginally. It has a very specific niche, and proliferates under
these limited circumstances. Wherever there is a concentration of white blood
cells is where transmission can occur…semen, vaginal fluid, blood, and breast
milk. It has nothing to do with being good or bad, being godly or sinful.
The medicines that we now have would not be here if not for
the efforts of ACT UP and TAG. The issue had to be forced and these folks have
had a real impact on the lives of countless others. AZT was a beginning, a stop gap measure at
best, but it was a beginning at least. I don’t even know if you were being
treated with AZT during your illness. What I fear is that you were unaware of
your condition until the very end. That some lingering illness finally forced
you to the doctor (you had no health coverage I know) and that it was here that
you found out that you had AIDS. I recall our last conversation at your home
late one night, it was an odd conversation and I felt like you wanted to tell
me something. Or maybe I am not recalling correctly. I’ll never know and I am
left with the feeling that I missed out on something you were trying to say
that night. I’m sorry. "Until we know what we don't know, we can't let go."
From my public health training, I understand the need for
clinical trials and the money and time spent in research and development. No
use in chasing approval for a drug that does not have sufficient efficacy. The
documentary shows this clearly and it was something that ACT UP had to learn…the
hard way. As an organization, they
learned from their missteps and as a result some real change came. But I will
still say that had they NOT acted out as they did, we would not be where we are
today. It was a necessary revolution of sorts. But it came too late for your benefit.
And we all are at a loss from your absence. I want you to know that my research interests stem largely from
my relationships with you, Kevin, and Gary. All of you my friends, brothers and
lovers. I miss you most of all.
I’m in a good place now and about to complete my degree. I’ve
privileged to know others living with this “big disease with a little name” and
my life is so much richer for it. They
allow me to ask the difficult questions and to wrestle with the implications.
They are patient and kind in their responses. They have allowed me to document
some of their life stories and I hope to use this to tell anyone who would
listen that their stories and experiences are important. That it is not enough to treat a condition,
but equally important is to see the individual behind the health condition and to
respond accordingly. I’m sorry for what you endured. Thank you for being in my
life. Thank you for the continued inspiration. I love you.
Silence = Death Act
Up, Fight Back, Fight AIDS
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