What You Lookin' At?
Unlike Reinaldo Arenas, Cuban author of the AIDS memoir Before Night Falls, I'll never be on my deathbed writing about -- being on my deathbed. It's only after I've gotten to the safe side of a tough situation that I can examine it. My recent experience with HIV wasting is a case in point. It's over -- for the time being, thank God. Now I can milk it dry.
But first, meet me as a kid. A fat kid -- 5 feet tall by 150 pounds wide -- a tubby pouf sporting a pompadour and cowlick, cockeyed horn-rims sprawled across my face, and black cotton X-PlodoPants bursting at the seat. Let's face it, no junior queen wants to be exiled to the fat kids' haberdashery, "husky" and "fashionable" being oil-and-water terms. Intensifying the mix was my mother, a woman concentrated on Maximum Presentability, social status be damned. This is a lady who hauled out the spike heels, girdle and chignon for K-Mart trips ("attention shoppers: talent scout in aisle 3!"). And it's not as if no one noticed; a plump sissy is an irresistible target for bullies of all ages -- other kids and adult men with "issues" pounce with equal ferocity. Fortunately, by ninth grade I had slimmed down, blended in, and haven't been overweight since. But, oh the scars run deep.
Leap forward a few decades and I'm a gay man in Manhattan, living in a culture where presentation countsandcountsandcounts. I joined a gym, cultivated pecs and washboards, and was able to say that I was pretty damned pleased with myself (and, in spite of continuing therapy, able to ignore that wretched chubby kid cowering deep in my gut). As for buying into gay New York's "looks are everything" message, I was primed -- clearly.
And so, the seasons danced by. If you're like me, as you grow older -- especially if you happen to mature at the same time -- it becomes natural for the workouts to grow less compulsive and the need to keep on top of the edgiest trends, hottest labels, and coolest stuff to ebb. Not that you've become immune to fashion -- it's still a priority, just not the priority.
Hear me well: I have nothing against looking good as I age -- but the Botox/lipo route just isn't for me. For one thing, I'm not delusional. Martha Stewart herself can't hot-glue cotton balls to a rat and call it a French poodle. For another, I'm old enough to remember what happened to Totie Fields, a fellow diabetic. Since I'd rather not be remembered as a dead, one-legged comedienne, elective surgery isn't a good choice for me. I find simple merit in reaching my half-century mark with something to show for it -- a pulse, for one thing; so many of my friends didn't make it this far. When I go out, I'll be pleased to look like a really pulled-together forty-nine-year-old -- nothing spectacular; certainly nothing flashy -- absolutely nothing scary.
I've been scary -- twice. Which is to say that in the past three years I've had two episodes where I've become so thin that people stare. Now, I don't have a press agent to deny the obvious ("She's not too thin! She's a natural size zero!"), nor do I possess the anorectic's trick of discerning something other than the mirror's horrible truth. When I'm deathly skinny, I see it. Cheekbones spike where I had none. I stare out through vacant eyes and crack a tight rictus when an easy smile is called for. I read it on the scales -- no "well nourished" adult man of 5'8" weighs 120 pounds. I feel my 29"-waisted pants slip past fashion's boundaries, and, Jesus, even my hair looks burdensome and false, as if I'm balancing a fresh batch of Dynel to sell in the village marketplace.
I also see other people seeing it. Folks who've known me for years and remember what I'm supposed to look like fail to find the words when we meet, horror trumping candor. I don't mind when they freeze up or when they tiptoe around it. (I actually yearn for someone to blurt out, "Yo, Calista! You servin' sauce with those ribs?" so I can wittily crack wise.) But mostly, people cringe. That hurts, and causes me to shun the day. My inner butterball wants to curl up into a lump, pull down the shades and sleep for a week.
How does this happen, this wasting? Why has this happened twice? I didn't catch on the first time, but I think I've finally figured it out. Both times, my meds -- or rather my uncanny ability to tolerate large dosages and many pills -- have gotten me into trouble. Instead of discovering that my body is hurting soon after beginning a new regimen, I can go for months, adding a bonus PI or experimental nuke now and then, perking along just fine. And then, imperceptibly at first, my body turns against me.
The pleasure of food begins to wane; nuance and subtlety going first, until finally everything tastes like the box it came in. Pounds slowly start to drip off like wax down a candle. The less I eat, the less I'm able to keep down, and the spiral continues. Nausea becomes a constant comment. Incontinence is the norm. Soon, weight that has been slinking away suddenly starts flying off. Attempts to add bulk with power-packed canned shakes achieve maintenance at best. Elation gives way to frustration as the few pounds gained during the day disappear overnight as if I'd spent eight hours jumping rope instead of sleeping. Back where I started. Double Dutch bust.
In 1998, NBC Nightly News interviewed me at home on the eve of that year's International AIDS Conference. The word had been dribbling out that protease inhibitors, much touted, didn't work for everybody. Resistance threatened to sink our ship of hope. As one of the "failures," they wanted to spend a few hours with me to see how's doing with the terminally flunked. So a producer, a cameraman and a soundwoman trooped into my apartment while I displayed my overflowing medicine cabinet like a demented game show model (You've won a year's supply of Imodium!). Ever the gracious host, I made a huge bowl of gazpacho (which I had no appetite for, of course, but the crew devoured) and expounded on my dismal prospects. As expected, two hours of relative congeniality was pruned to a cranky 10-second sound bite. But far more appalling was seeing my skinny self on TV for the first time: old, tired, and emaciated. It was truly an "Interview with the Vampire" moment and I prayed that the folks back home weren't tuned in.
Thankfully, the family didn't see me then, and there would be no homecoming this go-round, either. A surprise appearance in my condition would have been like a visit from a funhouse prop. Not that I was anxious to sit still for a four-hour train trip -- in my current condition a subway ride across Manhattan was a vomit-inducing, diarrhea-restraining ordeal.
Besides, I was stockpiling the Imodium for a real vacation -- a week in the desert near Palm Springs. My friend, Mike, has a place on the edge of Joshua Tree and I was much looking forward to a serene, meditative, high-desert experience. But at 5:00 a.m., two days before the flight, my eyes popped open and I knew, right then, that there was no way I could tolerate a five-hour plane trip, much less the cab to the airport. I was defeated, and since I couldn't swallow much of anything else, I swallowed the cost of my non-refundable tickets. Then, on top of feeling sick and depressed, I became angry.
When I get angry, I get arbitrary. So I stopped my HIV drugs. All of them. All at once. Need I tell you, taking six antivirals is a lot of heavy-duty medicine (my doctor calls it "do-it-yourself-chemo"). I was on Agenerase, Kaletra (which includes ritonavir), Epivir, Zerit and tenofovir, not to mention pills to counter the side effects and more pills to prevent the opportunistic infections I'm susceptible to, all topped off with daily insulin injections. Dropping the "big guns" turned out to be an inspired move -- within twelve hours, I had regained my appetite, energy, taste, and even a little enthusiasm for life. To careen from several months of 'round-the-clock feeling lousy to abrupt normalcy gave me fresh insight into the word "gift".
My doctor, it turned out, supported my impromptu strategy. I'll avoid the heavy-duty drugs for a while, then select a new regimen. (Though I can't imagine what. After years of dosing, my virus was no longer susceptible to any available treatment). I'll probably choose something that doesn't make my toes tingle and lets my triglycerides return from orbit. One recent bit of good news is that even staying on drugs that have failed can help keep the virus in check. And, this just in, according to the Phenosense report, I've developed a sudden, inexplicable sensitivity to Rescriptor, of all things. Life looks bright.
Now that I'm on the other side of this episode (I've gained 19 pounds in the past few weeks), I'm dealing with some lingering questions. The fat little boy -- the skeletal man -- are they two versions of the same creature? Do I have a set of inverted values working here, where whether or not I look right is of more significance than my underlying health? Possibly. After a point, living with this disease -- as much as it constantly reminds me of its presence and even though I know it could finish me off -- becomes a tad dull. Why shouldn't health issues and the mundane, quotidian cares of life, like "How do I look?" equalize over many years? Do I deceive myself into feeling good, even as I'm rotting away internally, so long as it doesn't impinge upon my comely form? Is my secret to tolerating a quantity of drugs sufficient to stun a horse due to good old-fashioned mind-body separation?
Frankly, I wouldn't be unique. I know many gay men, total knockouts, whose glittering surfaces belie the deterioration within. It's the old Dorian Gray thing -- a confident façade concealing a decrepit interior; Poe's House of Usher with vinyl siding. Or maybe (because he has to share such cramped quarters with all of that virus in there), it's The Revenge of the Fat Little Queen.
This article was provided by Gay Men's Health Crisis. It is a part of the publication GMHC Treatment Issues. Visit GMHC's website to find out more about their activities, publications and services.