What can long-term survivors teach the world?
First Generation by Chuck Willman
My name is Chuck Willman. I tested positive for HIV in 1988. In 1995 I had progressed to “full-blown AIDS.” Despite my long battle with AIDS, my only awful and debilitating ailment is peripheral neuropathy in my legs, which makes it difficult for me to walk, especially late in the day. I have been very fortunate not to have had many hospital stays (actually one for meningitis); I am a cancer survivor (not HIV-related); I have a fantastic doctor here in the Las Vegas area; and a partner of more than twenty-four years. I live a rather quiet life. I stopped working in 2006, and live on Social Security Disability benefits and Medicare like a lot of you do. I write poetry, erotica, essays, book reviews, and I’ve been lucky to have had several of these things published over the last few years. That’s me in a nutshell.
I do not, however, have a large group of friends, or much of a “community” around me, which I regret and miss. The “community” here in Las Vegas is quite spread out, and, unfortunately for me, clustered around gay nightclubs here. (As an old guy—I’m fifty-one—once I take my evening medications, I’m pretty much shot by 8:30–9:00 p.m., usually in bed by 9:30–10:00! Living in a twenty-four-hour city when a lot of activities are scheduled for late(r) in the evening makes it difficult for me to meet new people. Besides, I have trouble getting around much of the time.
Because of this fact—and I doubt I’m the only “PLWA” over forty years of age in similar circumstances—I wanted to write about things that affect those of us who have lived with this insidious virus for at least twenty-plus years. After speaking with a few others that fall into this category, I was interested in finding out more about our experiences, our lives.
In my opinion, an enormous chasm—more like the Grand Canyon!—has developed in the LGBTQ community, especially for those of us infected (and that may be true for the community that you predominantly identify with, as well). As I mentioned earlier, I’ve lived with the virus for twenty-four years. Many of you have lived with it for a long time, too. And we’ve all watched friends and lovers die—in some cases losing our entire family of choice, a generation wiped out by this virus. And with each passing, it feels like we’re moving up a little closer to the edge of the cliff, waiting and hoping we’ll be spared for a while longer.
The stigma of living with HIV/AIDS is still very strong, even within our own community. We’re slammed in the face with it. Even taking our daily medications doesn’t give us a break; we have to look and remember! And we spend a lot of time defending ourselves and what remains of our lives. We’re told to “make lemonade out of lemons” (great advice if your lemons aren’t poisoned!). Or “just be happy—be positive!” (hard to do when you feel like hell, you’re in pain, and it feels like no one cares). On top of being sick, we can feel isolated and angry…the list goes on. I wanted to address these and other issues that face us “long-timers” not lucky enough to “pass” anymore in most cases because of the horrid side effects of medications we’ve been on for years, changing our bodies forever. For those of us who have been around before it was even called AIDS, the fact is: everything is very different for us. That’s the audience I most want to reach. And some of what I have to say will apply to those over and under fifty, no matter when they were diagnosed, too.
I wanted to write a column dealing with specific issues for those of us infected for twenty-plus years—basically an “AIDS & Aging” column. Some examples are: AIDS and depression, feeling “invisible”—finding a place to be heard; love or sex, or just fitting in (including social media); disclosure; resources from living wills to navigating the Social Security Administration, Medicare, Medicaid; traveling (lots of places where “we’re” not welcome!); among others. A lot of this information will come from me, but there will be times when facts, data and resources will be given. And I’d love to hear from you! E-mail me at [email protected] if an issue/topic/problem pops into your head. I hope I can be of some help to you, and I’m very happy to be doing this!
Chuck Willman is a self-taught writer with poems published in Assaracus: A Journal of Gay Poetry, A&U: The 2oth Anniversary Anthology, forthcoming from Black Lawrence Press, Nurturing Paws (Whispering Angel Books), and Christopher Street magazine. His erotica has been published in Cruising and forthcoming in Big Man on Campus, both Cleis Press anthologies, and other stories have appeared in FirstHand, Manscape, and Guys magazines (under the pseudonym Ethan Cox). He has essays published and forthcoming in The Other Man (JMS Books) on sex and HIV/AIDS. Chuck lives with his partner of twenty-four years in the Las Vegas area. E-mail: [email protected]