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I'm Dancing as Fast as I Can

An Insightful, Funny Account About How HIV Has Changed One Man's Life

September/October 1999

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

The funny thing about HIV is that it changes everything in your life. Funnier still, at the very same time everything stays the same. It's a regular laugh riot.

Good thing -- Perfect, uncontestable excuses, anytime, anywhere.

Bad thing -- They're quite often true, and ya can't use 'em on the family cuz they don't know the deal yet.

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The high velocity melodrama associated with a positive test result, including the storm clouds, the rolling thunder, the Tammy Faye Bakker eyes, the wailing, the whole "woe, woe is me" kielbasa, inevitably segues into yet another tired afternoon rerun of Match Game with all those sad celebrities who are both funny and not funny. Because ya aren't, ya aren't, yarn't gonna die anytime soon... which, hello, is a major drag at first realization. Talk about a downer, you have all this emotion going on, you're feeling the absolute worst you've ever felt, you're a sorry sack of sick, Death has come a knockin', and all you want to do is to invite it in, offer it a tall glass of cool, refreshing tap water with a flexi-straw, and take to the bed wearing something silk, accessorized perhaps by a huge turban and a pair of supersized Jackie O's, and whisper feebly as you chain smoke (what does it matter anymore?) and prepare to call it in, cash in your chips, check out of this taco stand. Of course it's all shot in high contrast black and white, lots of shadows, very film noir, and as your many distinguished guests file by to pay you homage one last time, they can't help but remark to one another how valiant you're behaving under such grim circumstances. "He's so brave." they say. None of them can even believe it, no one else would be so strong as this. Comparisons to Mother Theresa, or at least the Flying Nun, seem appropriate. "There but for the grace of God," they say. Your quiet strength is helping everyone else cope with the immense pain of losing you. It's quite glorious, actually. The director loves your work, this is going to be your thirty-two-ouncer if not your Magnum Opus. At one point the camera catches one perfectly formed teardrop rolling down the drawn face of your first major love, the one who pulverized your heart and made you run into traffic and cry and scream and smash things (there'd be so many more). He's flown in from Philadelphia (isn't that ironic?) to say goodbye and regret how he hurt you, begging for repentance, wishing it could all be different, somehow, somewhere. Such wasted opportunities, the end so very near. "You'll miss me when I'm gone," you croak, dismissing him with a heavy sigh and an exhausted wave of a gloved hand. He is overcome by grief and impending loss, the camera witnesses his crumpling just outside the door, just outside your field of vision. Fade out.

Well. The next morning the alarm goes off at the same time and you awake in that same puddle of drool on your pillow. Your breath still stinks. You gotta pee. You gotta make some coffee, get ready for work, there are bills to pay. People to see. Trains to catch. Because yarn't dying (anytime soon). The world, believe it or not, is still rotating on its axis, probably just to spite you. The guy on the corner still stands in his balcony and pretends he's Evita, hollering and carrying on, shaking his fist at the thousands of little voices in his head. Yarn't dying just yet, get used to it. Get over yourself, there are people with worse problems than you, and again probably just to spite you, they don't know what you're going through, don't care, and never will. Yarn't dying, Blanche. Besides, your costume's looking tatty, you've bent the Jackie O's in your sleep and the turban has unraveled. And the camera makes you look fat, the crew is cranky, and the director is hitting on your ex.

Good thing -- People feel sorry for you.

Bad thing -- People feel sorry for you.

This disease is a mind fuck. For many of us, thanks to all the "arsenals" and assorted horse pills out there, our personal viral companion is going to take a long, long time to finish its number, which is a doozy, being sung in Latin, off-key, with no intermissions. Many of us will pass on due to other causes, ya know, hit by a car, struck by lightening, Mad Cow, dingo stampede, shot point blank by a foaming Charlton Heston. Yet every day with HIV you confront the cold reality of your own mortality, of the precious fragility of your life. And being impatient, you would just like to get it all over with. Pronto.

Well good luck.

The first irony. In the almost four years that I've been HIV positive, I've been seriously ill several times, in the hospital a couple, and close to cashing it in once. All this not from HIV related causes but from asthma, an often deadly, pain in the ass, complicated long term illness I've had since birth, thirty-three and a half years ago.

The second irony. The HIV didn't make me sick until I started on the meds that are going to help keep me well. Now this is the one that really gets me. I started on a triple combo a couple of years into this whole thing, this bizarre journey, when I was feeling perfectly fine. Everything had been just Peaches and Herb, very 70's radio on your AM dial, except for the latest blood work that showed a marked rise in my viral load and a marked decrease in my CD4s. Oh super. I felt great, but there it was in black and white, the disease was progressing, numbers don't lie, better do something about it. So I finally succumbed, to the mantra of "hit hard, hit early", to the strange glamour of cutting edge HIV therapy, to those ubiquitous ads that made me think I'd be hot and buff and glossy, shooting the rapids in a kayak, if I only were cocktailing.

So I signed up. What choice did I have?

But my sun dappled technicolor fantasies on how I would triumph over this wily virus were usurped by the opposite of "glossy", which I guess might as well be called reality. And as those Buddhists might say, "reality bites". It's certainly not Hollywood, it's more like Milwaukee, really. The only "shooting rapids" I've dealt with have been diarrhea... catch the wave. Exciting, unpredictable diarrhea. Farts gone terribly wrong, split-second timing marking the difference between "fresh" and "soiled". If glamour is nausea, fatigue and headaches, gagging, choking, farting, and burping, then call me CoCo cuz I got it down cold, dahling. Puke is the new puce. High collars are back, the better to camouflage that lipodystrophy that's become so popular. Ah shucks, sarge, I may be able to climb to the mountain top and shake my fists at the sky, but I'm gonna have to rip down my cargos and frantically squirt a nuclear, membraneous gruel from betwixt my firm glutes as soon as I get there. But hey, I've got well over 700 CD4s and the virus remains undetectable.

Good thing -- Constipation is not a concern.

Bad thing -- Diarrhea for eternity.

I have a friend who's positive. He attempted going on drugs a couple years back and, surprise, surprise, they made him completely miserable. Did he gut it out? Did he go from combo to combo 'til he found something that fit, if not perfectly, close enough? No, he just quit, refusing to let his life be substantially diminished by the myriad debilitating side effects most of the meds deliver with such oomph, such gusto. He hasn't taken anything since, he remains healthy, feels good, and remains blissfully clueless as to his viral load and CD4 measurements, showing little concern for the obsessive-compulsive tracking many of us get caught up in. He feels good. He's happy, vital, living a fuller, more active life than most people I know.

How stupid is that?

I take twenty pills a day. Sixteen of which are enormously enormous. Glaxo gets all thrilled with itself when it combines AZT and 3TC into one pill, Combivir. I say big deal, those pills were tiny to begin with. Big fuckin' whoop. Why do sixteen of mine, those protease inhibitors called Agenerase, have to be big enough to gag even the most talented of throats? Why the hell can't they combivir those suckers? Twenty pills a day. Twenty pills a day, that for the first several months made me sick to the gills, and still do to this very moment as I write this, just not as severely. Twenty pills a day that are helping contribute to the very real threat of deforestation I pose via my generous, ongoing use of mass quantities of toilet paper. Twenty pills a day that remind me how "sick" I am, keeping me tethered, enslaved to the idea of "disease". Ah the emotional and mental battles. Can I do this forever? Can I take 7300 pills a year, endlessly? Can I remember every time? Can I resist the temptation to skip, to indulge in a drug holiday here and there? Can my body tolerate it all? And what will happen when it can't?

Good thing -- Denial's not an option.

Bad thing -- Denial's not an option.

My friend is a brilliant guy. He's well-informed about HIV and AIDS. And he's made a conscious, conscientious decision not to join the hysteria fostered by pharmaceutical companies, doctors, the media, and yes, us, and he's decided to wait. Happily. Maybe he won't make it twenty years. But the time he has here won't be spent gagging down toxic dolls, oversleeping, undersleeping, canceling business appointments and social engagements. It won't be spent fighting heartburn and managing gastrointestinal distress, it won't be spent atop every toilet in the city, and it won't be running out of the bakery because the smell of fresh bread is all of a sudden repulsive. It won't be chained to tests and percentages and numbers and every new meaning of "undetectable", over every fabulous new therapy that's mo' bettah.

Not yet at least. Because he has a life.

My way is to stay the course, stick with the program, tempted though I've been to say take it and shove it. Because it is working for me, and it's giving me a chance so many never had. I'd be a fool to screw that up, wouldn't I? Not to say that it doesn't suck, because it does. It sucks big time. It just doesn't suck as bad as it used to.

Some Advice

Do healthy things to make yourself feel good. Get a massage. As often as you can. See a shrink. For as long as it takes. It doesn't have to be all about your HIV status, but dealing with the issues you have, dealing with your life, will make you feel better, will make you healthier, though it may not be easily measured by a test result on your chart. It's all about that mental/emotional/physical equation. Healing energies need to be directed towards all three. Taking the pills and showing up for blood draws is not enough, you have to find joy in your life if you're going to survive. Call it coincidence, but since I started shrinking regularly, which began around the same time I started on meds, I have progressively felt happier and more secure about myself, concurrently noticing a decrease in allergy and asthma problems, even a lessening of my combo's side effects. (Could I really have just spent a long weekend away with my honey and not had even one squirt of diarrhea?) Or maybe I'm just not letting them bother me so much. Whatever, they're not dominating my life like they once did. It's about accepting and loving yourself. And I'll tell ya what, love is the best complementary therapy going. First love yourself (essential), then love your mom, love a puppy, love a friend, love a lover. And let them love you back. Love, just love. Love each other like crazy, act the fool, sing off-key, write bad haiku, pick up the phone, drop a card in the mail, rub their belly, pat their head, tell them how important they are in your life, cherish their existence in innumerable small ways. Enjoy who they are, not who you'd like them to be. Do let love in your life, be open to it, be willing to experience it, and I'll guarantee you that the diarrhea won't seem so catastrophic, the heinous pills won't seem so heinous. For simply and profoundly, love is the answer.

Good thing -- Making the best of a bad situation, and having it work.

Old Tibetan saying -- "It is better to live one year in the life of a Tiger, than to live 15 years in the life of a sheep."

Don't know about you, but I feel g-r-r-r-r-reat!

Got a comment on this article? Write to Jim at jimberlypickett@aol.com.

To read more of Jim Pickett's columns, click here.

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!



  
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This article was provided by Positively Aware. It is a part of the publication Positively Aware. Visit Positively Aware's website to find out more about the publication.
 
See Also
Day One With HIV: Finding Out Your Status, in Your Own Words
TheBody.com's HIV/AIDS Resource Center for the Newly Diagnosed
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