"Oh my God, you are so thin."
Skinny by nature, I've heard this all my life. Often, when other women comment on my weight (or lack thereof), it is with a twinge of jealousy. But today, when I run into a good friend I haven't seen in two years, I detect something else in her voice: alarm."You are so, so thin. Are you OK?"And with her question, the walls of justification I've erected against the changes that have crept up on my body over the last few years come crashing down. My shrinking calves are from wearing nothing but high heels the past three months, I've told myself. My gluteus maximus has become more minimus from riding my horse again after a winter of rest. As for going from a size 8 to a 4 in two years, so what? Thirty-five seems high time to lose that baby fat. And as for my drawn face, let's face it, I thought -- I'm getting older. Friends my age also have the beginnings of sunken eye sockets, depressed temples and a general look of things giving in to gravity.The problem is, my careful rationale ignored a critical difference between my friends and me: HIV. I have it, they don't. True, thanks to an AZT, 3TC and indinavir (Crixivan) power-combo (begun within days of my diagnosis six years ago), I have an undetectable viral load and a reasonably sized army of T cells. Generally, I feel great. But, seeing my friend's stricken face today, I wonder if the very meds that have saved my life have cursed me with the look of death.The topography of my face has unquestionably changed. My lips and the bridge of my nose protrude much more than before. The twin peaks of my cheeks now jut above hollows that used to be full. You could use my jaw to open an envelope. And the lines from the bottom of my nose to the corners of my mouth look like a "before" ad for Botox."I'm fine," I say to my friend today. "Just a little stressed, I guess."But now I wonder: Is mine the new face of AIDS?At home, a few days later, I am obsessed with the extent of my body changes. I slip a pencil under my butt cheek, at the top of my thigh. It clatters to the floor. It's official: My ass is grass. I tilt my head back and lay the pencil between my protruding cheekbone and eye socket. It stays there. There is no question about it: All four of my cheeks have fallen and can't get up.For many women, the revelation that excess fat has melted from your face and derriere would be cause for celebration. But for me, clearly, judging from my friend's reaction, it's a cause for concern. Could this be the onset of lipodystrophy -- that dread, mysterious disorder of medicated HIVers where too much fat vanishes from some places (like your arms, legs, butt and face) and too much shows up in others (shoulders, breasts, stomach)? Am I to awaken one morning soon with an enormous buffalo hump? A pendulous paunch? Is my body, still the same 5'8" and roughly 125 pounds it's been for the past 15 years, to become some weird amalgam of Frosty the Snowman and Olive Oyl?Or am I just wasting away?Though I'm embarrassed to admit it, my first concern is not whether or not I am sick -- it's whether I look sick. It's not that I categorically value beauty over health. It's more a matter of not wanting to lose control of my body, and therefore, my privacy. Here in white, upper-middle-class, suburban New Jersey, it's hard to imagine a warm, welcoming response should I, say, show up at the tennis court sporting an "I HAVE HIV!" t-shirt. So I have chosen not to disclose my status for fear of the whispers that would certainly roar behind my back. Though I may eventually disclose, I want to decide when.
But of all the people I've worried might disclose my status without my approval, my own self -- via my body -- wasn't one of them. Until the other day. Bumping into my friend made me feel strangely exposed, like the emperor when he finally realizes he's not wearing any clothes.
I have my reasons for not wanting to look like I have HIV. One, the same reason I choose not to tell everyone I have it: I do not want to be treated like a person with a disease. The few people I have told -- my family, a few close friends, lovers -- try to treat me as if I am normal. But there's always a subtext of concern for my well-being. Though people's understanding of HIV has come a long way, I still fear that if I were to tell the world about my status, I would experience less casual contact -- which makes me feel normal, which, in turn, makes me feel healthy. I have the opportunity to make the people in my inner sanctum comfortable with HIV and confident it won't affect them. I don't have that luxury with the world at large.
Two, how I appear is also just important to me. I've been lucky enough so far to have no explicit outward manifestation of the cellular war raging inside me. That makes me feel good, despite the unseen rigors of the struggle. Somehow, I see the superficial exterior as the final line of defense. And I'm afraid that if that line gets crossed, I'll feel like I'm fighting a losing battle.
Three, HIV has already left me sexually hog-tied, and I don't mean in a good way. I feel like I have to be extremely careful about sex, the way my body interacts with an HIV negative lover. I was never one to flaunt my body or my sex -- but now that actual sex has become more complicated, the way I look provides an alternate channel through which I can express myself sexually. I may not be able to tear some guy's clothes off with wanton abandon, but maximizing whatever physical attributes I have to make a man want to tear off mine releases sexual frustration. Sort of.
Four, I worry that I will repel potential lovers. Men "brave" enough to sleep with me need to banish the thought of HIV to the edges of their brain, at least in the heat of the moment (what's worse than self-conscious sex?). This has got to be easier when I look robust and rosy-cheeked. It's also got to be easier for potential lovers to have faith in my longevity and thus consider me a viable love pursuit if I'm glowing with health.
And, finally, I don't care what Kate Moss' or Gisele's bodies suggest about the fashion world's ideals of beauty: No man or woman wants to sleep with a bag of bones.
That's it, I decide. It's time for professional help.I go see Sue, an HIV nutritionist in my doctor's clinic. As Sue measures my arms, waist, hips, butt and calves, I desperately wish I had taken my doctor's recommendation and had this done early in my HIV diagnosis to establish baseline figures.
Sue connects me to a machine that measures how much fat, muscle and water I have in my body (bio-impedance anyalsis). Then, she pinches my little folds of fat between calipers. The computer crunches my numbers: I am below (but not too far below) average weight for my age, sex and height. Big whoop. This has been true forever. But my lean body mass is low. She suggests we talk about diet.
I stall. Am I really going to confide to this legume-and-soy-eating, over-calciumed, perfectly hydrated specimen that my breakfast today consisted of coffee with six sugars, two Diet Cokes and a package of icing-covered butterscotch crumpets? I think not. I don't go so far as to say I had a grapefruit, but I only confess to one Diet Coke and half the package of crumpets.
"Let's meet again," sighs Sue. "You need nutrition lessons."
One week later, I'm back in Sue's office. "How's your appetite?" Sue asks. "Pretty good," I tell her. What I don't tell her is how much I hate to eat alone, or how I'm convinced my compromised immune system has given me a bird dog's sense of smell that makes me overly sensitive to certain aromas -- even ones I used to love like broccoli, fried chicken and Swiss cheese -- and kills my appetite. I don't confess I'm often too tired to cook, or too depressed to make a meal. I certainly don't tell her that sometimes I have a few glasses of wine to relax my mind and never get around to turning on the stove.
But I guess I don't have to tell her all this. Do you ever invite friends over for dinner, she asks, if only for a simple meal?
Good suggestion. Why haven't I tried it before, when it's certainly crossed my mind? Because on the nights I most need support, I am afraid to turn to the people who know about my status. Having told them, I feel a huge responsibility to minimize their worry. My family and friends are so fearful for my health, I don't want to torture them until I have no choice (and, hopefully, that day will never come). Maybe I'm a martyr, but I still see asking for help as an admission of things going downhill. Thus it remains something I'm not able to do at this point.As for my current lover, he is long-distance and not always available to be by my side. He is also struggling to learn about and cope with the disease. I can't help but fear that if I appear needy, it will lessen the chance that he'll seriously commit to us.
I tell myself I don't ask for help because I don't feel desperately in need of it. I also think that admitting I need help is surrendering in a way I'm not prepared to do yet. I guess that's why, on days I need company the most, I often eat alone.Sue has a lot of other good suggestions -- about my dietary and sleep habits, about ways to battle depression, and about the value of counseling and support. She thinks talking to a professional might be a healthier way to quiet my mind than imbibing half a bottle of chardonnay. I agree, and tell her I have a therapist, but that she's not always around during one of my tailspins.
Sue takes my picture from the front, back and side, and tells me we'll repeat this whole ritual in a couple of months. Then she sends me home. Don't worry, be happy, she says.
I am. For a couple of hours. Then I'm back at the mirror, which appears to have gone totally funhouse on me. I hold up pictures of my mother in her mid-30s against my reflection to determine whether I am succumbing to the virus or just old age. I decide that indeed I do look like her -- as she is now, that is, at 58. In the photo, her high pile of beautiful jet-black hair, neatly bound with a ribbon, crowns a 35-year-old face that clearly looks younger than mine currently does. Not that she had fewer wrinkles or better skin tone at that age. But whereas mine looks weighted, worried, hers is carefree and confident.She is still head-turningly beautiful today. But I, if few others, can discern when I see her the shadow of fear and anxiety that veils her face, too, for having confronted this disease in me. I'll never forget the look on her face the moment I told her of my diagnosis. It was the expression of a mother tigress encountering her slain cub -- primordial and animal and terrifying. It's an image I have tried in vain to erase from my mind's eye -- my mother's face tortured by the pain of thinking me dead.
Luckily, we've had happier moments together since then, despite our shared shadow. Like the day we sat together in the waiting room for my first post-diagnosis AIDS-doc's visit, playing Hangman. I racked my brain to come up with the second letter of her two-letter word. She stared at me, smiling faintly.
It was "IV." My mother and her gallows humor.
Stay pretty by dying young, Deborah Harry once said. Well, I decide I neither want to die young nor live looking like hell. So today I call Donna, my doc for the last three years, to see what I can do if my body starts to totally wig. Donna makes me feel much better. For starters, as my "numbers" are good, she urges me not to stop taking my drugs on the chance it'll make me look better. She reminds me that much of my health is due to my excellent adherence. I say I will not head for a drug holiday -- yet.
She shares the good news: There are strategies to combat advancing lipodystrophy, starting with good old exercise (more weight-lifting than aerobic) to prevent further loss of muscle, and even to rebuild it. She thinks the isometric effort of trying to stay on my horse daily is a good thing.
I'm especially happy to hear this. Barbells can be ignored, but Andy -- who needs me for food, water and exercise -- cannot. Truth be told, I need Andy as much as he needs me: Just being around him lifts my spirits, and on those days when I don't want to be alone but eschew reaching out to my fellow homo sapiens, his unconditional affection is a lifeline. I bought Andy the year I was diagnosed. He is my link to normalcy -- my reminder that I am the same person I was before HIV came to live in my body.
Finally, we get down to what I really want to know about, like liposuction to remove unwanted fat deposits and surgical implants to rebuild atrophied areas. She even mentions plastic surgeons capable of implanting custom cheeks and chins.
She suggests I think about things and come back in a few weeks to discuss minor surgical options. I leave wondering if she has a secret stash of Botox she'll dispense for compassionate use.
A few weeks later, I'm back in Donna's waiting room, surrounded by all manner of people with various states of HIV. Some have drawn faces and thinner arms and legs, but no one seems in pain or acute fear. Dare I say they look...good?Most assuring is that there's less of a divide between most of them and me. We seem to be in a similar boat -- holding steady against the tides of HIV progression. Years ago, I felt guilty for sitting among so many very ill people when I was healthy. In the middle of empathizing with them, it struck me that it was only a matter of time before I too was turbaned and hooked up to an IV. It made me angry and frightened and very uncomfortable.
Today, there's more of an unspoken shared vibe of hope and strength. I recognize Marla, whom I met last year, and notice that she looks much improved. A strikingly pretty African-American woman, she looked like she was pushing 40 and was walking with a cane this time last year. She'd seemed too overwhelmed or weak to care about her appearance. Her hair was an unpurposeful mess, her clothes simply there to cover her body. Today, she enters the room unassisted, her hair neatly combed back, looking and walking like someone about 30. We talk and watch TV. Things could be worse, we laugh: We could be guests on the "Jerry Springer Show."
I pick up a recent issue of Vogue. Flipping through, I discover, to my horror, that butt implants are now in, uh, vogue. It's just my luck that when my body finally syncs up with fashion, fashion changes its fickle mind. Now, baby's gotta have back?! Thanks for nothing, J-Lo. I resolve that I, for one, would consider a butt implant only if my tush went so AWOL that I needed it just to have something to sit on.
A young man comes in and sits beside me. He's dressed in extreme biking gear, sleeves rolled up above his elbows. He's strapping, healthy and robust (just like in those HIV drug ads some people have accused of misleadingly making HIVers look "too healthy." Hah). His veins bulge like those of a marathoner, as do the veins of many medicated HIVers who've lost some subcutaneous fat. Rather than conceal them, though, he seems to display them with pride.
I look down at the network of hypervisible veins beneath the skin of my own arm. Though I have been self-conscious about them in the past, there is something reassuring about being able to see my blood pumping around my body. That said, they also serve as a sign that I'm not like everyone else -- and maybe, too clearly, signal that I have HIV.
I scan the faces around me. We're all different: ages, sexes, races, sexual orientations. There are differences in the way we relate to our scars from our battle with HIV, too: Some of us hide or downplay them. Others, like the biker, flaunt them as though they were badges for having endured the disease. Marla too seems proud of her body; her jeans hug her skinny legs and a tank top reveals her stick-skinny arms. An older gentleman, in contrast, seems self-consciously concealed in a bulky turtleneck and voluminous pants. I look down at Vogue again and shiver a little with the irony. One thing's for sure. No man-made face, boobs or butt could be more beautiful than the resilience and dignity of the people in this room. Every one of us has been transfigured, inside or out -- and sometimes badly disfigured -- but we are still sitting here on this hot summer day in 2002, 21 long years after it all began -- watching Jerry Springer, and alive.I reintroduce myself to Marla and tell her how wonderful she looks. She says I look good too -- really good. "You shouldn't read stuff like that," she says, pointing to the magazine on my lap. "Don't you know that no one in real life looks like people in magazines?" She winks at me. And suddenly I get it.I put Vogue aside, say goodbye to Marla, and slip out of the waiting room. I'll call Donna tomorrow, to say maybe we can discuss fixing my face in the future. It's not broken yet.Driving home, I catch my reflection in that most unforgiving of looking glasses -- the rearview mirror.I try to see myself through Marla's eyes, and decide that maybe my cheeks aren't gaunt so as much as they are...chiseled. Maybe my newly prominent mouth is a little Mick Jagger-meets-Angelina Jolie sexy. And that jawline that could open an envelope it's so sharp? Maybe it's distinguished.Maybe it's all relative. Maybe though I don't always like what I see in the looking glass, I need to remember that as long as I see someone there, I'm still here.Maybe that's the real beauty of a face.
Names throughout have been changed for privacy.