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Mask, or, Losing Face

By fogcityjohn

July 19, 2010

"[F]or to lose one's face is to lose one's spirit, which is truly the 'face', the dancing mask, the right to incarnate a spirit ... It is the veritable persona which is at stake ..."

Marcel Mauss

You almost certainly wouldn't notice it if you saw me, but I wear a mask. It's not the kind you buy at the novelty store for Halloween, though. My mask is actually extremely unobtrusive. In fact, that's its intended purpose, to keep me from standing out.

You see, not long after my diagnosis, I developed lipoatrophy, a condition in which one's subcutaneous fat -- the fat beneath the skin -- wastes away. For months I watched, horrified, as my face changed before my eyes. It became more drawn as my cheeks slowly melted away. My lips grew thinner, and the corners of my mouth began to turn downward. The layer of fat underneath the skin was vanishing, and with it the face that my mind had come to identify as me.

If you'd seen my old face, you might well wonder why anyone would make a big fuss over losing it. I wasn't what most people would call particularly handsome. I freely admit my face wasn't anything special in the looks department, but it was me. Over the decades, that face had become my mental image of my persona. Those of us with HIV all know that the virus can change how we look at ourselves, but I hadn't really expected that it would actually change how I look. I didn't realize that HIV might rob me of the physical embodiment of my identity -- my face.

I sought treatment for my lipoatrophy, but I discovered there was none to be had. No one fully understands what causes it, and so there are no therapies or cures. The only available remedy was cosmetic filler. I tried Sculptra injections, but my condition kept getting worse, and I got tired of shelling out money for a filler that wasn't permanent. Eventually I decided to go to Tijuana for treatment with PMMA (polymethyl methacrylate), a permanent filler that's available in Mexico at a reasonable cost.

Over the last three years, I've had three PMMA treatments. The procedure involves the injection of PMMA microspheres beneath the skin. In the weeks following the procedure, the body encapsulates the microspheres in collagen, and it's the collagen that fills in the wasted areas. So gradually my face filled in, but my "new" face isn't the same as the old one. The differences are mostly minor, and for the most part they're too subtle for anyone but me to notice.

In some ways, my new face is "better" than the one it replaced. Lipoatrophy has rid me of the bags around my eyes and removed the slightly sagging flesh in my cheeks. The collagen that encapsulates the PMMA microspheres is firmer than fat, so my new face has a smoother, more uniform appearance. Gone are the laugh lines and crow's feet. They've been plumped up by filler. Because of the effects of the filler, most people are surprised to learn I'm nearly 50. They look at my smooth, unlined face and tell me they'd have guessed I was 40, or even 35.

I'm mostly happy with the work of the plastic surgeons I've seen. They've made it possible for me to conceal my illness from the world at large and thus to escape the stigma that comes with looking like one has HIV. I'm not out to my family about my serostatus, and the filler has kept them from suspecting that anything is amiss. For all of that I am grateful.

But while this treatment has masked my illness, it can't restore to me the thing I've lost -- my image of myself. Simply put, I no longer look like me to me. The face I now see in the mirror is not that of the man I used to recognize as myself. It is instead a facsimile of my face. It's an excellent fake, one that's good enough to fool pretty much everyone. Oh sure, those who haven't seen me in a very, very long time may pause and comment that I look different somehow, perhaps thinner. My usual response is just to laugh and ascribe any perceived change to my rapidly receding hairline. So far, that's never failed to satisfy them.

Thus this mask fools everyone but me. One perverse effect of this is that it has made it almost impossible for others to understand my loss. When I try to explain my profound disappointment over the changes in my appearance, friends tend to say, "You look fine!" Or they'll say, truthfully, that they can't see much difference. They mean all this in a good way, and they intend their words to be comforting. Yet I am left feeling like the victim of a robbery that no one will believe took place.

I know there's no way to recover what I've lost. My old face, the one I think of as the real one, isn't coming back. Forced to choose between my mask and the gaunt, wasted look of lipoatrophy, I've readily chosen the mask. But there are mornings when, as I prepare to shave, I look in the mirror and I long for that old face, the one with the lines and creases, the heavy eyelids, the dark circles, and the sagging skin of approaching middle age. I yearn for the face that reflects my spirit, the one my mind still tells me is the "real" me -- the face forever replaced by this mask I cannot remove.

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See Also
An HIVer's Guide to Metabolic Complications's Lipoatrophy Resource Center
Ask a Question About Facial Wasting at The Body's "Ask the Experts" Forums
More Personal Accounts of Facial Wasting (Lipoatrophy)


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Outlier: My Unusual Journey With HIV



My name's John. I'm 49 years old. I'm a lawyer by profession. I now live in beautiful San Francisco, California, after spending a long time on the east coast. I was diagnosed in 2004, so I've been positive for something like five years.

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