Biographies & Memoirs

50

PUTTING A NEW FACE ON THINGS

WOULD I WANT to start over with a new face? Would I like to eat, drink, talk, and look like a normal person? Even if that person was a stranger? In theory, this is now possible. In Spain and America experimental face transplants have been carried out. The damage to my face is considerable, involving the loss of my lower jaw, but in New Scientist magazine I read an article about a ravaged face: “The team then replaced this with practically the entire face of a dead donor, including all the skin, muscles and nerves, the entire nose, the lips, palate, all the teeth, the cheekbones and the entire lower jaw. These were grafted by microsurgery to what remained of the patient’s own face, and the blood supply reconnected. In the final part of the operation, the surgeons transplanted bones and connecting nerves to the patient’s own face.”

The lower jaw! After all, I have much more real estate still intact than the Spanish patient. My first surgery was planned to restore my appearance to something close to normal, and the next two were to bring me “closer” to normal. At first it was hoped my drinking, speaking, and talking would return. All three surgeries failed, leaving me as I am today, damaged but happy and productive. I appear to be cancer free. Why should I complain?

I’d need to undergo rehabilitation to learn to speak again, but a Cleveland doctor says one of her face transplant patients, after two years, “can say all her vowels and has such normal sensation in her face that she can feel a kiss.” This is encouraging. After the day in first grade when Sister Ambrosetta taught us to chant “A, E, I, O, U… and sometimes Y,” I never thought the day would come when I couldn’t say my vowels. But I can’t, and don’t bother asking about my consonants.

What if I could go to Spain and return with a complete face? If you passed me on the street, you might mistake me for a normal man. Smaller children would no longer stare and ask their mommies about me. Actually, that part, I might miss. These days children look at me frankly, with natural curiosity. I smile and wave, and they often smile and wave back. I’m not your everyday face. I provide entertainment value. I also believe our society has grown more tolerant of disabilities; never once has a mother snatched the child away from such a sight as me.

All the same, I don’t have any desire for a face transplant. I knew that even while I was still reading about the transplants. I knew it for so many different reasons that it was hard to sort them out. Let’s set aside medical reasons and assume for the sake of argument that the operation would be a success. I still don’t want one.

I feel it would be an act of disloyalty to my own face. I have lived with it so long. In adolescence I studied it with fierce concentration in the mirror, convinced my nose was too long, my lips too fat, and my zits would colonize all available facial skin. Later, I saw it idealized in one of those unreal high school graduation pictures. Later still, recorded in states of hilarity during long nights of celebration and days with the friends of a lifetime. I saw my hair grow long and then longer. I saw sideburns appear and retreat. Twice I saw the beginnings of a beard and shaved it off. I saw it fatter and thinner. I saw my face grow smaller with diet and exercise. I saw it for the last time on the night before surgery, when I looked in a mirror and took a photograph that appears in this book.

For better or worse, it was my face, and today most of it remains. After a face transplant it would be somebody else’s face. Something within me might recoil at the sight. I have no squeamishness about wearing another man’s face after he has no need of it; I support transplants of all sorts, and when I die I hope my poor organs can be of use to someone. I wish happiness to the farmer in Spain and the woman in Ohio. I was tremendously moved to learn Robert Altman had lived for more than ten years with a transplanted heart. Think of the films he was able to make, the joy he was able to bring. All of that is good. If I should someday need a heart or liver, I will seek one. But this face, however imperfect, is still mine. I own it. I look out of it. I’m rather fond of it.

For some time after taking that “final photo” of myself, I avoided looking in mirrors. I knew the first operation had gotten the cancer but the reconstruction had failed. I vaguely knew what I must look like, but I didn’t want to see. I was still inside, right here, in my head looking out, and in my mind I still had the same face. I could even feel sensations in places I no longer possessed—the “ghost limb” phenomenon. How did I know I’m in my head? How do any of us know? That’s where my brain lives and where my eyes sit. I am not in my chest, my hand, or my foot. I live in here and operate all the rest like Iron Man. And in here, I still imagine the same face, no matter what you see.

Of course eventually I looked in mirrors and grew to accept my new appearance. After the first surgery it looked… well, better than it does now. After the second surgery, Chaz said I looked pretty good. For the third surgery, I went to the famous man at the hospital in Houston. He labored for hours. My memory is cloudy because of pain medication, but a few days later I clearly remember Chaz holding up a mirror so I could see what looked like an acceptable version of myself. A specialist at the hospital had studied my tongue, professed herself satisfied with its motion, and told me I might talk again. Things were looking up.

That surgery failed, too. I sensed that my surgeons on all three procedures were personally saddened by the outcomes. I was not just a case for them. Microsurgery is painstaking, long, and unimaginably difficult. The surgeon invests so much of his skill in the process that when a procedure fails, he mourns. I never thought it was their fault.

It was probably the fault of earlier presurgical radiation I insisted on, hoping for an easy way around surgery. In Seattle every day for a month, I was strapped to a table suspended over a huge open space so the neutron beam equipment could rotate around me in 360 degrees. A tightly molded mask prevented my head from moving. A clamp held my jaws immobile. Precise readings were used to target the beam.

The radiation created nausea. Ordinary food became impossible. I was given antiradiation shots in my stomach wall—so powerful the first was to cushion against the impact of the second. I was forced to drink Ensure, which actually tastes pretty good, but during those days I could hardly keep it down. In the mornings Chaz would order me two eggs and I’d do my best. It wasn’t until four months later that I ate another real meal.

But the radiation seemed to have worked. I could still talk. I went back on TV and did more shows with Richard Roeper. I went to Cannes. And then the cancer reappeared.

I’ve written before about how I’ve come to terms with my current appearance. The best thing that happened to me was a full-page photo in Esquire, showing exactly how I look today. No point in denying it. No way to hide it. Better for it to be out there. You don’t like it, that’s your problem. I’m happy I don’t look worse. I made a simple decision to just get on with life. I was a writer, and so I was lucky. I wrote, therefore I lived. Another surgical attempt was proposed, but I said no. Enough is enough. I will look the way I look, and express myself in print, and I will be content.

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