Dropping the Ball

Dropping the Ball
Is it time to forge new connections & strengthen our AIDS communities?
by Chuck Willman

I’m angry. So as I write this, I cannot promise it will be a joy to read or digest. For that, I will apologize now. But I hope you’ll indulge me for a few minutes anyway.

I’m angry with myself. I’m getting over yet another “reaction” to something that I woke up to one morning; my entire body—neck to toes—covered and inflamed with painful, raised, purple dots, welts, and what looked like scratches from the claws of a big cat I had managed to escape. SHINGLES?! That was my first guess. But I looked on-line for images and mine didn’t look the same. I felt better about that, but it still didn’t explain anything. Actually, it looked as if I had been trapped in a phone booth, completely nude, with a couple of large wasp nests tossed in and opened up for, say, a couple hours! Clothing, bedding, upholstery, even an attempt at a cool spray in the shower was torture. And this wasn’t like the petechiae I had written about in a previous column.

Naturally, this meant another mad dash to find out what was going on. My doctor wanted blood first (the phlebotomist had trouble actually finding anywhere to poke me since the veins in my arms looked as if I had been on a year-long heroin bender). But she finally found a spot and got her pint out of me.

Jump ahead. Brand new problem for me: palpable purpura, which has a wide selection of causes, but looks hideous (like big, dark lesions mixed with purple spots and raised blister-like marks—pretty). I just couldn’t wait to go out in public! Even my doctor, who has seen damn near everything, was just shocked at how badly and quickly my ailment had progressed. I got a steroid shot of Kenalog—a thick, white cream-like concoction that felt wonderful flowing through what looked like a knitting needle into my non-existent ass. It’s taken several days to even notice a fading of the patches, lesions, spots, and blisters. But the condition is finally clearing up.

So why am I angry, you may ask?

I read a brief profile of Sean Strub’s new book, Body Counts: A Memoir of Politics, Sex, AIDS, and Survival, in OUT magazine last month (Mr. Strub was also profiled in the recent documentary, How to Survive a Plague.) A&U reviewed it last month, and I, personally, can’t wait to get my hands on a copy.

Strub suggests “activism has been kind of romanticized,” and that HIV-related stigma, like new infections among gay men, is getting worse. After three decades of surviving, he bemoans the loss of a communal support system: “When someone tested positive 15 or 20 years ago, there was a loving LGBT community that took on this epidemic as a shared responsibility, that put their arms around you and said, ‘We will get through this together.’” Now, that sense of care and a unity around the cause have disappeared, with negative effects: “Young people often don’t know anybody—or don’t think they know anybody—with HIV, and the LGBT movement has largely left AIDS behind.…There’s a real sense of not wanting people to forget and yet being surrounded, particularly in gay culture, by a world that has forgotten. There is a kind of compulsion to tell that story, and as time passes there are fewer and fewer around who can speak first hand.”

Arrow aimed, fired, and a direct hit into my chest!

I’m angry with myself for continuing to isolate myself and not connect as I once did with infected peers.

I left my doctor’s office that day actually eyeing about six other men, my age (I’m fifty-two), looking exactly like me: frustrated, diseased, outcast, and alone. What kept me, while waiting for more bloodwork to be ordered, along with my walking papers that day, from at least saying “Hello,” or making some contact as fellow-fighters, all of whom also swam in their comfy sweats, bodies deteriorating, skin as bad—or worse—than mine? I couldn’t take just a moment to sit next to one or two of them out of common decency to reach out? An “ever feel like a phone call, or cup of coffee somewhere?” kind of thing?

I’m not suggesting that saying “hi” or acknowledging other AIDS patients my age will “fix some disconnect” I experience of my own. But would it have killed me to introduce myself in a city that—in my nearly fifteen years of experience living in Las Vegas—lacks a cohesive HIV/AIDS community? Why not begin one? Maybe it would do wonders for me. I’m not out to save the world, but it does take a village…doesn’t it?

I left for my next appointment, a little teary-eyed and alone. I used to be stronger and more adaptable; more willing to put myself out there.

Instead, I came home, had a good cry, and went to bed with my beloved dog, Buddy, next to me.

I felt awful.

Along with being a contributing writer for A&U, Chuck’s had other work published in journals, magazines, anthologies,
and e-books.