Life Itself: A Memoir

by Roger Ebert

  What I miss is the society. Meals are when we most easily meet with friends and family. They’re the first way we experience places far from home. Where we sit to regard the passing parade. How we learn indirectly of other cultures. When we feel good together. Meals are when we get a lot of our talking done—certainly most of our recreational talking. That’s what I miss. Because I can’t speak that’s another turn of the blade. I can sit at a table and vicariously enjoy the conversation, which is why I enjoy pals like my friend McHugh so much, because he rarely notices if anyone else isn’t speaking. But to attend a “business dinner” is a species of torture. I’m no good at business anyway, and being forced to listen to a lawyer for much more than half an hour must be a violation of the Geneva Conventions.

  When we drive around town I never look at a trendy new restaurant and wish I could eat there. I peer into little storefront places, diners, ethnic places, Asian noodle joints, and that’s when I feel envy. After a movie we’ll drive past a Formica restaurant with only two tables occupied, and I’ll wish I could be at one of them, having ordered something familiar and reading a book. I never felt alone in a situation like that. I was a soloist. When I moved north to Lincoln Park and the Dudaks’ house, Glenna Syse, the Sun-Times drama critic, told me about Frances’ Deli on Clark Street. “They make you eat your vegetables,” she told me. There were maybe a dozen tables inside, and you selected from a steam table the day’s dishes like roast chicken, lamb stew, lake perch, and the veggies, although one of them was rice pudding. You want roast chicken, here’s your roast chicken. It was so simple it almost made you grin. You didn’t even have to ask for the bed of dressing on which it slumbered. Frances’ has moved into a larger space across the street but nothing much else has changed. Nobody will look at you funny if you bring in the Sunday paper and spread it out. And breakfast? Talk about the breakfast. If a place doesn’t advertise “Breakfast, Lunch and Dinner” and serve tuna melts, right away you figure they’re covering up for something.

  Until 2010 there was a place called the Old Timers Restaurant across the street from the Lake Street Screening Room in Chicago. I loved that place. No fuss, no muss, friendly, the owner stands behind the cash register and chats with everybody going in and out. I’ve ordered breakfast at lunchtime there. “You’re still serving breakfast now?” I asked. “Hey, an egg’s an egg.” This sentence, in a Web review, perfectly describes the kind of place I like: “A Greek-style chow joint replete with ’70s wood paneling, periwinkle padded booths, a chatty waitstaff and the warble of regulars at the bar. Basically, if you’ve ever had it at any place that starts with Grandma’s, Uncle’s or any sort of Greek place-name, you can find it here.” Yes. The Old Timers was busy, popular, and needed. In the summer of 2010, it closed without notice and was replaced by a high-rent Einstein Bros. Bagels. Formica eateries are the lifeblood of a city. On Lake, between Michigan and Wabash, Chicago has opened a dead zone.

  What’s sad about not eating is the experience, whether at a family reunion or at midnight by yourself in a greasy spoon under the L tracks. The loss of dining, not the loss of food. Unless I’m alone, it doesn’t involve dinner if it doesn’t involve talking. The food and drink I can do without easily. The jokes, gossip, laughs, arguments, and memories I miss. I ran in crowds where anyone was likely to start reciting poetry on a moment’s notice. Me too. But not me anymore. So yes, it’s sad. Maybe that’s why writing has become so important to me. You don’t realize it, but we’re at dinner right now.

  49 MUSING MY MIND

  I WOULD FANTASIZE about being blind or deaf. As a child of four or five I went through a weird stage where while lying in bed at night I would pretend I was paralyzed and imagine people coming to admire the brave little saint. I smiled and told them to pray the rosary. It never occurred to me that I might lose my voice. People on the street would try to sell those little cards showing a few symbols of sign language, and I assumed they were con artists.

  On campus, some group had a day every year where their members walked around blindfolded to raise money for charity. They depended on the kindness of strangers. They said they were “finding out what it’s like to be blind.” They weren’t doing any such thing. They were finding out what it’s like to be blindfolded for a day. Someone who doesn’t speak for a day has no idea what it’s like to not speak at all. If you’re in a country where no one understands you, that’s not the same, because you can speak.

  After losing my speech, there was never a single day when I realized that was what had happened. It became real to me gradually over a period of months, as one reconstruction surgery and then another failed. I edged into it, eased by a muddle of pain medication that for the first year made things foggy in general. My throat didn’t hurt; my shoulders and legs were giving me the trouble, after they had been plundered for spare parts.

  Blind people develop a more acute sense of hearing. Deaf people can better notice events on the periphery and comprehend the quick movements of lips and sign language. What about people who lose the ability to speak? We expand other ways of communicating. I can use my own pidgin sign language, combining waving, pointing, shrugging, slapping my forehead, tracing letters on my palm, mime, charades, and more uses of “thumbs-up” and “thumbs-down” than I ever dreamed of. Yet I know all about people responding “I don’t know what you’re saying.” I especially know about having the answer and not being able to express it, and how the flow of a meeting gets away from you while you’re desperately trying to write, or type, or signal what you want to say. People respond as if they’re being sensitive and polite, but unconsciously they’ve started to think of me as a little slow.

  I’m stuck with this and there’s no fix. I’m fortunate that I’m a writer and can express myself that way, but in a meeting or a group conversation I’m always behind. I want to contribute and people want me to, but it just doesn’t work. In the back of my head there’s the hope that maybe somebody with a bright idea will pop out of the woodwork and give me a solution. Not in my lifetime. I began to find some measure of serenity when I finally accepted that I would never speak again, and that was that. I went through three surgeries intended to restore some measure of speech, however imperfect. All three failed. All three removed just a little more flesh in an unsuccessful attempt to attach spare parts.

  So how can I communicate—not on the Internet, which I do easily, but in person at a meeting, a dinner party, or a social situation? I can (1) write by hand or on an iPad, (2) type spoken words for text to speech, or (3) select words and phrases from the selection on Proloquo or similar, more elaborate programs and devices. Signing doesn’t work at meetings unless you want to say things like yes, no, so-so, or shrug your shoulders—things everybody understands. True sign language is an elegant and complete medium and I have learned something about it, but one thing I’ve learned is that most people don’t understand it and never will. I may be inept, but in my experience of the Proloquo class of programs, the visual menus are slow and frustrating and hard to even see on a device like, for example, the iPhone. You find yourself with phrases like you find in those traveler’s books: Where is the toilet? What is the price? I am sick and need a doctor. Fill it up. My mind goes back to Monty Python’s Hungarian Phrase Book sketch.

  Text to speech has the advantage of being more precise and responsive. You type it, a program says it. There are purpose-built voice devices that are said to be quite helpful, but I find that my laptop computer is handiest. I’ve tried several voices and find that Alex, which comes built into the Macintosh, is the easiest for most people to understand. Chaz prefers Lawrence and his British accent.

  Writing on little notepads is quick and easy, but your messages have to be short, and people have to be able to read them. It amazes me how many people forget they use reading glasses. They take your notepad and move it closer or farther away from their eyes, trying to get it into focus, and finally say, “I think I need my reading glasses,” and then start patting their pocket
s or searching through their purses. Meanwhile, everyone else in the group is smiling politely. If even one of them tries to get in a few quick words, the conversation moves on and the moment is lost.

  A related problem is that some people don’t seem to keep conversations loaded in current memory. If something I’ve written is a reference or a punch line to what was said two comments ago, they have no idea what I’m talking about. If I try to explain, the flow is even more seriously interrupted. Do people assume I make random statements out of context? Fifty years as a newspaperman have trained me to listen and follow through. The conversations of some people seem to drift in an eternal present. I didn’t realize this so clearly before my current troubles.

  Here’s the point I’m at now. I find that I can weather about an hour of a business meeting before the bottled-up thoughts make my head explode. It’s so hard for me to express myself that I’ve become aware of the words ordinary people waste. It used to drive Gene Siskel crazy when people would call him on the phone and tell him where they were calling from and that they’d tried earlier or meant to call yesterday and ask him how the weather was. “Lip flap,” he called it. “What is the message?” he would interrupt.

  At dinner parties or social gatherings, I deliberately dial down and just enjoy the company and conversation. I’ve given up trying to participate very much. People mean well, but it just doesn’t work for me. I keep myself company. I don’t feel especially lonely by myself. I feel lonelier at a party, when I’m sitting to one side. I like our family and close friends because they’re used to me. But I’m never going to speak, and I may as well make the best of it.

  At first after losing my speech, I could not read easily, because sedation had undermined my attention span. I was depressed. I could turn on the TV, but why? My wife brought a wonderful DVD player to my hospital room, but I could not make myself watch movies. My life was stale and profitless. I would spend hours in a murky stupor. Knowing I had always been reading a book, my concerned wife began reading the mainstays to me: Jane Austen and Charles Dickens. I couldn’t follow.

  Curiously, my love of reading finally returned after I picked up Cormac McCarthy’s Suttree, a book I had already read not long before my first surgery. Now I read it two more times, reentering the same experience, the same occult and visionary prose, the life of Suttree so urgently evoked. As rarely before, a book became tactile to me. When Suttree stopped at the bus station for a grilled cheese, I ate it, and the pickle, and drank the black coffee. I began to live again through this desperate man’s sad life. In my chilly hospital room late at night, a blanket pulled around me in a wheelchair, a pool of light on the page, I found myself drawn into the story of Suttree with an intensity I hadn’t felt from fiction in years. I hungered for that book. I yearned toward it. Suttree was alive. He lived for me. How strange that a novel about such a desperate man could pull me back into living. I had no use for happy characters. What did they know?

  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 v
ersion 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.