February 26, 2013
Twenty Years and Counting
by Tom Judson
A long-term survivor reflects on his journey with HIV.
I didn't expect to live long enough to write this when, 20 years ago today, my doctor called to tell me that my HIV test had come back positive. The news hit me like a bomb; hyperbole or not, back then it was still pretty much considered a death sentence. Dazed, I replaced the phone in its cradle. Almost immediately it rang again.
"Are you all right?" asked the voice on the other end.
"Mom?" Huh? Had the doctor immediately phoned her to tell her that I had seroconverted? Then again, when I came out at 19, it was more my mother announcing that she had "always known" than me spilling my big gay news to her. But still! "Um, yeah, I'm fine," I told her. "Why?"
"I just heard the World Trade Center was bombed."
From the living-room window of my apartment, you could see the Twin Towers, but where I lived in the East Village was distant enough that on the morning of Feb. 26, 1993, I was well out of harm's way. I assured Mom that I was fine and hung up.
My thoughts then turned back to my health status. Though new to my bloodstream, the virus had already had a big impact on my life. Living in New York City in 1993 meant that I had many friends who were infected. My partner, Bruce, was HIV-positive when we met three years before. And the "death sentence" aspect of it didn't throw me as much as one might expect; I had been an avowed atheist since I was a teenager and possessed an unshakeable belief that there is no life after death. As far as I'm concerned, the end is the end. Full stop.
But the community of theater folk to which I belonged had already been decimated by the disease, and more and more people were dying on a depressingly regular basis. It got to the point that I was afraid to pick up the phone. With black humor I kidded my ill friends that they'd better let me know well in advance when they planned to expire, because my services as a eulogist were in great demand. In those days, if you went for several months without hearing from a friend, you just assumed that he was... pfft. Even general conversation suffered; you didn't ask how So-and-so was, or how many T-cells Whatshisname had, simply because you were afraid of the answer.
Mostly we didn't discuss our individual situations more than necessary, on the theory that if it wasn't talked about, it might just go away.
On the afternoon of my diagnosis, Bruce and I took the train up to his folks' house in Rhode Island for the weekend. All day Saturday I ruminated silently, hoping to confirm that my ideas of life and death were as rock-solid as I claimed they were. Here was my foxhole; would I remain a nonbeliever in the face of what was sure to be a premature, possibly horrific death? Sunday morning, when Bruce and I went to pick up the bagels, we drove past a cemetery that is known to have graves that predate the American Revolution. As I rested my forehead against the cold glass of the passenger window, looking at the ancient markers, it occurred to me that most of the folks lying there in the ground had probably faced similar existential crises of their own. Like me, they pondered the uncertainty of their remaining days. I imagined them lying awake, fretting over their fates.
And still they all died.
Boom. That was just the kick I needed. Yes, I really did believe the things I said I believed. Of course, I didn't want to die young, but why spend any of the time that I was still breathing worrying about it? No, I probably wouldn't live to see the year 2000, an event that I had looked forward to since I was a kid. OK, but the important thing is, what's for lunch?
On the trip back to the city, waiting in New Haven while they swapped diesel for electric, I gazed out the train window and looked at the advertising posters lining the platform. One in particular caught me eye, and I turned to Bruce and said flatly, "I just want to live long enough to see Cats close."
Bruce died three years later, in the spring of 1996, our strategy of denial having failed. That November my counts had fallen to the point that my doctor suggested that I start on meds. I refused; any interest I had in seeing in the new millennium had died along with my husband. Fortunately, like a determined ray of sunshine that finds its way through a sidewalk grate to the subway platform below, a moment of clarity pierced the fog of my grief, and I realized that there might come a day when I did want to live, and that if I died because I refused medication when it was offered, I would feel really, really dumb.
So how do things stand today as I mark the 20th anniversary of my initial diagnosis? I'm healthy as all get-out; my counts that should be high are high, and them what should be low is low. And it turns out that being alive is terrific; I've had a heck of a lot of fun since my drugs kicked in.
Sadly, I lost Bruce and most of my friends. I even outlived the World Trade Center. And much to my surprise, I was around to celebrate as the 20th century slipped into history. But I'd have to say that of all the milestones I've passed since that shocking morning two decades ago, the thing that pleases me most is that I lived to see Cats close.
Tom Judson is an actor, musician, composer and author. This article originally was published on The Huffington Post.
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comments 1 - 9 (of 9 total)
mike, zambia, 2013-03-15 00:25:14
Tom, you are strong and an inspiration.I was diagonised in 2011 and my cd4 is above 500 but not on med.how can I live longer like you.
mike, florida, 2013-03-14 10:21:26
I have been poz since 84' still going. Just changed med's two months ago. Doctor surprised that Im still around.
Alejandro, Bogota, Colombia, 2013-03-13 22:34:01
Thanks so much for this inspiring and encouraging story. I have been poz for nearly two years now, and I still do not know whether or not I should start on meds. The idea of having side effects scares me more than any idea of death. Here in Colombia the provided meds are generic and I suspect they are not as good as the ones you get in the US. I am still searching for some encouragement and good information. Your story helped me lots. Thanks for sharing
Randy, Houston, 2013-03-05 16:55:36
Tom--thanks. It's been 20 years for me too. Back then I just wanted to see Cher do another film. It turns out that being alive is sooo much better than Burlesque.
Jim, Pittsburgh, 2013-03-05 15:05:14
Tom - thanks for your article. It made me sad as I have gone through a lot of the same things you mentioned. But your punchline at the end made me laugh out loud and that was a nice mixture of feelings - sadness in my memories but also joy in them. I have been positive for over 25 years and doing very well. But I like you, have lost every friend who was also positive that long ago. I often wonder how my life would be if some of those really close friends were still around. Thanks again!
Chris, Azle,Texas, 2013-03-05 09:49:39
26 years and counting here.To me it has been a blessing in disguise as it truly has made me aware of what the truly important things are.
Steve Sawicki, Baltimore, 2013-03-05 09:30:46
Thank you for this article, and congratulations on your milestone! In June I reach my 2-year mark. The news hit me like the proverbial ton of bricks. Your words, and your journey, are an inspiration. Keep up the good work, and the positive outlook (no pun intended).
Chad, Adams, MA, 2013-03-04 07:23:20
Wow, my infection is my own fault i was tricked into the married deprived sex and the guy wasnt married but full of a huge toxic viral load looking to pass it on to younger naive guys who were either bullied or fatherless (he told me this in a letter) i suffer severe pancreatitis and on the verge of homelessness, You're turn around and courage to see life is special and inspiring.Manhunt and online meets are bad. full of mostly (not all) but selfish bad angry men.i gave older a chance. got hiv
Iain, Manchester, UK, 2013-03-01 19:11:22
comments 1 - 9 (of 9 total)
Such a tearful, and emotional tale. 17 years here and stronger thanks to my better half. I'm oddly luck in not having lost anyone to HIV, despite most of my friends being +ve. Great to see another account of why HIV is not a case of "shut up, take a couple of aspirin and wait" like the earlier days. Be happy, be strong my friend.
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