The Guardian
By Roger Ebert

Guardian Note: Roger Ebert is regarded as one of the greatest film critics in the world. But after being diagnosed with thyroid cancer in 2002, he was left unable to speak, eat or drink. In an extract from his new book, Life Itself, he explains how his life has been changed.

OCF Note: We highly recommend reading Mr. Ebert book “Life Itself”. For those that read this news feed – whether you do as a dental or medical professional, or as a patient, survivor, or caregiver; it holds much wisdom that you can apply in your own world.
Life Itself: A Memoir

My secret as an interviewer was that I was actually impressed by the people I interviewed: not only by Bill Clinton, John Wayne or Sophia Loren, but by Sandra Dee, Stella Stevens and George Peppard. I am beneath everything else a fan. I was fixed in this mode as a young boy and am awed by people who take the risks of performance. I become their advocate and find myself in sympathy. I can employ scorched-earth tactics in writing about a bad movie, but I rarely write sharp criticism of actors themselves. If they’re good in a movie, they must have done something right. If they’re bad, it may have been the fault of the filming conditions or editing choices. Perhaps they may simply have been bad. I feel reluctant to write in a harmful way; not always, but usually.

My job involved doing a great many interviews. I was always a little excited by the presence of the subject. The best interview I ever wrote was one about Lee Marvin, in Esquire in 1970. I sat in his beach house in Malibu for a long afternoon of drinking and he said exactly what came into his mind. There was no press agent present and no mental censor at work. He didn’t give a damn. I was a kid he’d never heard of, but that afternoon he gave me the opportunity to write accurately about exactly what it was like to join Lee Marvin for an afternoon of desultory drinking. I took notes. Later, typing them up, they came to resemble dialogue. They weren’t interrupted by questions, because I realised quickly that questions and answers were not going to be happening. Lee was passing time in public.

In those days, movie stars didn’t move within a cocoon of publicists and “security”. Then, it was possible for Charlton Heston, Cliff Robertson and Clint Eastwood to walk into a place like O’Rourke’s pub and have a drink and not give a damn. The master of that was Robert Mitchum, who had never given a damn about anything. The “bad publicity” he got for posing at Cannes with a topless actress or being busted for pot only enhanced his aura, because he’d spent no effort in trying to be someone he wasn’t.

What the interviewer has to understand is that he is not a friend or a confidant. He has engaged in a superficial process for mutual benefit. In a few cases, I have become, if not friends, at least very friendly with actors or directors. I felt bonds with Werner Herzog, Martin Scorsese, Robert Altman, Paul Cox, Ramin Bahrani, Errol Morris, Jack Lemmon, Walter Matthau, Shirley MacLaine, Clint Eastwood, William Friedkin, Mike Leigh, Sissy Spacek, Michael Caine, Atom Egoyan, Paul Schrader, Brian De Palma, Francis Coppola, Jason Reitman. I am a good friend of Gregory Nava and Anna Thomas, whom I met at the Chicago international film festival in 1975 and whose El Norte (1983) was the first epic of the American indie film movement. I felt a meeting of the minds with Robert Mitchum, but that was because of who he was, not because of who we were together.

Losing the ability to speak ended my freedom to interview. There are new stars and directors coming up now whom I will never get to know that way. Tilda Swinton, Sofia Coppola, Ellen Page, David Fincher, Colin Firth, Jennifer Lawrence. I’ve never even had a proper conversation with Philip Seymour Hoffman, Marisa Tomei, Edward Norton, Darren Aronofsky, Catherine Keener or George Clooney. I tried a few interviews using the voice in my computer while tape-recording the answers. I got some good answers, but you couldn’t call these conversations.

I’ve felt better about another approach: I ask prepared questions and take digital video of the response, finding that being on camera inspires more conversational frankness. During those interviews, I pause to type up follow-through questions. All the same, my last real interview was at Cannes in May 2006, when I talked with William Friedkin, Tracy Letts and Michael Shannon, the director, writer and star of Bug. That was a movie I was eager to discuss. Now that is all in the past.

After a movie at the Lake Street Screening Room in 2002, there was a note for me to call my doctor, Bob Havey. “I have good news and bad news,” my doctor said.

“What’s the bad news?”

“The tests came back. You have thyroid cancer.”

“What’s the good news?”

“You have the kind you want to have. It’s one of the rare cancers with a 99% cure rate.”

He explained that I would have thyroid surgery, a common operation. After I recovered, I would check into a hospital room for two days and drink a shot glass of radioactive iodine. The achilles heel of my particular cancer was that it finds iodine delicious. It soaks it in and the radiation kills it, no matter where those cells may have spread to.

The thyroid surgery was successful. The radiation treatment was bizarre. I was shown into a hospital room where surfaces were covered with white paper. I drank the tasteless cocktail. For two days, no one was permitted to enter my room and my meal trays were pushed through the door. I wore clothes I could throw away and resurrected an old laptop that would have to be mothballed for radioactivity. At the end of the time, a nurse came in wearing protective gear and checked me with a Geiger counter and I was sent home with instructions not to sleep in the same bed with my wife, Chaz, for two weeks or sit next to a pregnant woman on an aeroplane.

The radioactivity in the iodine, I was told, was about 5% as powerful as the monthly radiation treatments I, and thousands of children, had been given in the 1950s for ear infections and acne. Those treatments paid off half a century later in a boom for the formerly rare thyroid cancer. Now all I had to do was figure out the correct dosage of Synthroid to take every day for the rest of my life.

A few years later, I went in for a routine scan to check for any new problems. This time, the news was not good. My doctor sent me to a specialist, who explained cancer had been seen in my right lower jawbone. It wasn’t the same cancer as affected my thyroid and I guessed exactly what it was. In 1988, a cancer had been found in my right salivary gland. There was a lump there clearly visible in a photograph of me. When Christopher Hitchens fell ill, people wondered why he hadn’t noticed a lump on his clavicle. Maybe it was because you don’t want to notice such things.

I had been shaving over the lump for some months in the 1980s before my doctor palpated it and sent me to the specialist who was impressed; this cancer was so rare he’d never seen one in 35 years of practice. He was like a hunter bagging a unicorn and told me with some pride that a colour slide from my tumour had made the cover of the Walter Reed military hospital’s research magazine. It was the kind of publicity difficult to turn into Nielsen ratings. My tumour grew less rare in the years to come – the childhood radiation had probably caused it. Because I was born four or five years earlier than most of the boomers, I was the canary in their coalmine.

The surgeon, Harold Pelzer, took his time and got everything. “You have no more tumour,” the specialist said, adding: “It is very slow growing, but the odds are it may return after some years.”

It did. It had probably hidden in my mandible. This time, Dr Pelzer took one of those plastic models you always see in medical offices and measured a length of mandible a few inches long. This, he explained, would be removed and replaced with a bone graft taken from the fibula in my calf— one of the bones we don’t need. Dr Neil Fine, an expert plastic surgeon, would do this and patch me up so that after healing there was every reason to expect I’d be back on my TV show.

That’s not how it worked out. All by myself, with nobody to blame, I found out about the work in neutron radiation being done at a handful of hospitals. It was much more powerful and narrowly targeted than gamma radiation. The leading specialist was said to be Dr George Laramore at the University of Washington Medical Centre in Seattle. “My equipment is made for your tumour,” he told me. “Of course you should have surgery first.” Harold Pelzer also recommended surgery first. So did Havey. But no. I became convinced there was a shortcut that would avoid plastic surgery and a healing period and have me back on the air much more quickly. I insisted. My doctors and Chaz advised the path of caution, but I cited reams of web printouts indicating what a miracle this neutron radiation was. Eventually, it was decided to give it a go.

The internet is said to be responsible for helping patients take control of their own diseases. Few movies are ever made about sick people courageously taking doctors’ advice. No, they get bright ideas online. I believe my infatuation with neutron radiation led directly to the failure of all three of my facial surgeries, the loss of my jaw, loss of the ability to eat, drink and speak and the surgical damage to my right shoulder and back as my poor body was plundered for still more reconstructive transplants. Today, I look like an exhibit in the Texas Chainsaw museum.

I mentioned in my blog that I can no longer eat, drink or speak. A reader wrote: “That sounds so sad. Do you miss it?” Not so much really. The new reality took shape slowly. Understand that I was never told that after surgery I might lose the ability to eat, drink and speak. Eating and drinking were not mentioned and it was said that after the first surgery I might be able to go back to work on television. Success in such surgery is not unheard of. It didn’t happen that way. The second surgery was also intended to restore my speaking ability. It seemed to hold together for a while, but then, in surgeon-speak, also “fell apart”. In both cases, the idea was to rebuild my face with bone and flesh transplants from my legs to restore an acceptable appearance.

Both surgeries failed because microsurgery to reattach blood vessels broke down. Dr Fine had done an exemplary job both times, but the neutron radiation was there ahead of him and the tissue could not hold. In the second, a vein was used to carry blood from a healthier area into a more threatened one. Dr Fine instructed nurses and interns how to listen to this vein, and I listened in myself: a soft pulsing flow. One day, it could not be heard. The transplanted flesh would die and had to be removed. Both of these surgeries eventually resulted in catastrophic bleeding of a carotid artery.

I was flat on my back for long periods after the surgeries, to avoid stress on the sutured areas. Muscular degeneration took place and I graduated from intensive care to the Rehabilitation Institute of Chicago to learn to walk again. At the start, they winched me out of bed in a sling. I eventually walked well enough, but never again with the happy stride of the previous few years.

My surgeon had a national reputation and was known as a perfectionist. I could tell he was disappointed that his best efforts had failed. He and Dr Pelzer came to me with a third idea, which they felt might be safely attempted. By now, there was no pretence of “restoration” and the goal became simply to repair the opening in my chin. Both of my fibulas and both of my thighs had already been plundered. It would be necessary to transplant tissue from elsewhere.

Chaz and I flew to Houston to get an opinion from Pierong Yu, a surgical specialist at the MD Anderson Cancer Centre. He proposed moving a flap of tissue from my right shoulder and rotating it to fasten under my chin. This had the advantage of preserving its existing blood supply. The surgery worked better than we’d dare to hope. In a mirror, I saw myself looking familiar again. But after a little more than a week, that surgery failed too. Radiation damage again. A fourth surgery has been proposed, but I flatly rejected the idea. To paraphrase a line from the orchid collector in Adaptation, I’m done with surgery. I should actually have stopped after the first, but then I had no idea of the troubles ahead. If I’d had no surgery, the cancer would have continued to spread and today I might probably be dead.

Since removing the cancer was the primary objective of the first surgery, it’s unfair to call it a failure. I’m very aware my cancer is very slow growing and insidious. The bastard is quite likely lurking somewhere as I write. I’m 69, but in excellent health. I would be obscurely pleased if something else carries me off before that insidious cancer wins its waiting game.

During the entire period of my surgeries, I was nil by mouth. Nobody said as much in so many words, but it gradually became clear that it wouldn’t ever be right again. There wasn’t some soul-dropping moment for that realisation. It just… developed. I never felt hungry, I never felt thirsty, I couldn’t be angry because the doctors had done their best. But I went through a period of obsession about food and drink. I came up with the crazy idea of getting some Coke through my G-tube. My doctors said sure, a little, why not? For once, the sugar and a little sodium wouldn’t hurt. I even got some tea and a little coffee. I couldn’t taste it, of course.

Returning to the original question: isn’t it sad to be unable to eat or drink? Not as sad as you might imagine. I save an enormous amount of time. I have control of my weight. My blood pressure and cholesterol would make any doctor cheer with joy. Everything agrees with me. And so on.

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 with pals and vicariously enjoy the conversation. 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.

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 realise it, but we’re at dinner right now.

When I was a student, some group had a day every year where their members walked around campus blindfolded to raise money for charity. 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 realised that 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.

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 my own words for text to speech; or 3) select words and phrases from the selection on the Proloquo program on my laptop or iPhone (but here my mind goes back to Monty Python’s Hungarian phrase book sketch). Signing doesn’t work at meetings unless you want to say things like yes, no, so-so or shrug your shoulders – things everybody understands.

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 Mac, 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 pockets 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.

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. 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.

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. 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 mummies 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 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 colonise all available facial skin. Later, I saw it idealised 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.

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.

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. After the third surgery, 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. It was, I am convinced, the fault of the earlier pre-surgical radiation I insisted on, hoping for an easy way around surgery. It 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 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.

‘Kindness” covers all of my political beliefs. I believe that if, at the end, according to our abilities, we have done something to make others a little happier, and something to make ourselves a little happier, that is about the best we can do. To make others less happy is a crime. To make ourselves unhappy is where all crime starts. We must try to contribute joy to the world. That is true no matter what our problems, our circumstances. We must try. I didn’t always know this and am happy I lived long enough to find it out.

One of these days, I will encounter what Henry James called on his deathbed “the distinguished thing”. I will not be conscious of the moment of passing. In this life, I have already been declared dead. It wasn’t so bad. After the first ruptured artery, the doctors thought I was finished. Chaz said she sensed that I was still alive and was communicating to her that I wasn’t finished yet. She said our hearts were beating in unison, although my heartbeat couldn’t be discovered. She told the doctors I was alive, they did what doctors do and here I am, alive.

Do I believe her? Absolutely. I believe her literally. I believe she was actually aware of my call and that she sensed my heartbeat. I believe she did it in the physical world I have described, the one that I share with my wristwatch. I see no reason why such communication could not take place. I’m not talking about telepathy, psychic phenomenon or a miracle. The only miracle is that she was there when it happened, as she was for many long days and nights. I’m talking about her standing there and knowing something. Haven’t many of us experienced that? What goes on happens at a level not accessible to scientists, theologians, mystics, physicists, philosophers or psychiatrists. It’s a human kind of a thing.

This news story was sourced and vetted for accuracy and appropriateness by the Oral Cancer Foundation.