What issue packs the community center? Facial wasting. Joe Westmoreland reports
In September, with New York City’s fashion week in full swing, I went to a seminar hosted by Bristol-Myers Squibb (BMS) on the “latest advancements” in treating lipodystrophy. I don’t have “puppet face,” but I have had body wasting. At one point, I lost 40 pounds. I was a walking skeleton—face caved in, no meat on my bones—although inside I still felt like my “old” self. People on the street stared at me with pity. Sometimes I’d look in the mirror, shocked at my eyes popping out of my head. I kept thinking, “I should be grateful I’m alive instead of worrying about what I look like.” But I worried. Then my doctor switched my combo, and I gratefully gained my weight back.
The room at New York City’s gay community center was hot, stuffy and packed with 200 middle-aged gay men (and a few women) waiting for a glimmer of hope. Most faces in the crowd showed wasting, from hardly noticeable to deep wrinkles where full, round cheeks once were. It reminded me of myself.
The first speaker was David Butcher (real name!), MD, a long, lanky HIV specialist. “I thought I’d show you some of my garden photos to break up the monotony of all these charts,” Butcher said. After every few lipo facts, he’d slip in a slide of his boyfriend in their garden, a banana tree, his dogs curled up asleep. He made a point of telling us that Zerit (d4T) has a bad rap—unfairly. In his expert opinion, Zerit does contribute to lipo—but so do other drugs, so does HIV. A man in a business suit asked if he knew which company made Zerit. “Bristol-Myers Squibb,” Butcher said matter-of-factly. A few people laughed. The BMS reps, young women who’d greeted us smilingly at the door, stared at the floor.
The audience was restless. “Does any-one recognize this butterfly?” Butcher asked of another garden photo. No response—facial wasting is no garden party, Doc.Today, with all the amazing, life-extending drugs, living with AIDS is like an endless endurance test. It’s terrifying when your face changes: Your image of yourself slips away, and there’s nothing you can do. It’s AIDS playing another cruel joke. Too bad that Butcher was standing in front of us saying there was no “latest advance.”
Next up was Stacey Silvers, MD, a local plastic surgeon in a tan pantsuit. “With lipodystrophy, you can’t build muscles in your face like you can the rest of your body,” she said. In her view, neither collagen implants nor silicone injections work very well. The guy next to me, John—toned, muscular body and high cheekbones—said softly, “I’ve had seven collagen injections. When the swelling went down, the collagen had already dissolved.”
“It’s time to think outside the box,” Silvers was saying by way of introducing her own pet procedure, mid-facial implants. You choose the style of cheeks you want from a catalog, then Silvers makes a few tiny incisions under the lip and over the gum and slips in small wedges of clear, hard plastic. “Think of it as putting tent poles under your cheeks to hold them up,” she said cheerily.
She showed us before-and-after slides of two men and one woman with mid-facial implants. They really did look better! Suddenly we were all sitting up and paying attention.
“Any questions?” Silvers asked, still facing the screen. Two men who looked like a couple whispered back and forth. One raised his hand. “What about infections? Is that a problem?”
Dr. Silvers put down the remote control. “It’s not a problem for you. You’ll be sedated! But it’s a problem for me because I have to tug and pull to get the implant out,” she said. “But I can do it, and they can be re-inserted after the infection clears up.”
Looking around at the audience, Silvers suddenly said, “Let’s face it—we’re all desperate. Whatever you can do that works is very important.”
What else was there to say? Some people went for the coffee and chocolate cake in back, but more moved up front to talk with Silvers. She stood surrounded, passing out her business card. I went for the dessert and saw my friend Kevin, waving a piece of cake. “Too bad we can’t apply the fat in this cake directly to our faces!” He told me about his recent surgery: Fat from his back was put into his sunken cheeks. “I hadn’t felt like going out in public for three years. It’s not just vanity. There’s more to living with AIDS than high T cells.”
I left the seminar disappointed. It seemed drastic to say our only hope is plastic surgery. Not that I have anything against the miracle of modern technology —my entire immune system is bionic. Later I read about the news that 75 percent of HIVers said they’d rather go off meds and risk their health than have lipo and look like a freak. That really disturbed me. In a more perfect world, facial wasting could be worn as a badge of courage. After all, we’ve been through hell and back! But that’s not our world—even for one evening when we’re all together. For now we do our best to fit and keep on marching.