Ebert now blogs and has an extremely popular Twitter feed. He writes about politics and social issues, and movies, and culture - and he cooks, and writes about food. Like any really good writer, Ebert can write about nearly anything that interests him and make it a good read.
So the man is missing part of his face, and he doesn't eat, and he doesn't speak. What does that mean? How does he live? One can get nourishment through a stomach tube, and many people communicate without verbally speaking. But the mechanical means of survival are the least interesting part of a disability story. How did he adjust? What helped, what hurt? Who is he now, and how different is it from who he was? Questions like that flood through my mind.
A writer for the New York Times recently began a story about Ebert with a classic - that is, cliched - lede about her personal awkwardness at being in a restaurant with a man with no jaw. Where should she look? What happens when it's time to order? Because, you know, other people's disabilities are all about your social comfort.
I've spent a lot of time listening to, thinking about and writing about people who live rich and fulfilling lives, and who have complex physical disabilities. Not "who live fulfilling lives despite disability"; I don't subscribe to the standard "overcoming obstacles" take. Every successful person has overcome obstacles, almost by definition. Some obstacles are more visible than others, and the ones that are visible - even for that person - may not even be the biggest challenges. For example, Roger Ebert is also a recovered alcoholic. Addiction is an obstacle that millions of people struggle with every single day, but it rarely shows.
At the same time, the "living a good life despite disability" angle imagines disability as outside the person, a separate entity to be pushed aside or clambered over on the way to normalcy. How can something so integral to one's identity be reduced to an impediment to be "overcome"? Physical disability is often deeply identifying, like gender, or sexuality, or skin colour. Are the essential facts of our lives merely obstacles?
I've come to think of the success-with-serious-physical-disability story as "transcending circumstance". The circumstance is unavoidable. It can't be denied or ignored. It must be dealt with. But how? Some people live in the past. Others carry their disability like a flag - always on display, but still at a distance. But many people incorporate their changed circumstance into a new identity; they embrace it and are transformed by it. Then they turn around and transform their world.
Transcending circumstance is not a solo act. It requires a strong support network, a lot of love, and access to excellent health care and rehab programs. It requires a fierce inner strength and self-awareness. It requires flexibility: a willingness to shed an entire way of being and enter into a new bargain with life. To move beyond regret for the past and fear of the future - to acknowledge loss, to mourn - and then to change. Inside. That is transcendence.
Here's an excerpt from Chris Jones' excellent story on Ebert that ran in Esquire this past March.
Ebert spent more than half of a thirty-month stretch in hospitals. His breathing tube has been removed, but the hole in his throat remains open. He eats through a G-tube — he's fed with a liquid paste, suspended in a bag from an IV pole, through a tube in his stomach. He usually eats in what used to be the library, on the brownstone's second floor. (It has five stories, including a gym on the top floor and a theater — with a neon marquee — in the basement.) A single bed with white sheets has been set up among the books, down a hallway filled with Ebert's collection of Edward Lear watercolors. He shuffles across the wooden floor between the library and his living room, where he spends most of his time in a big black leather recliner, tipped back with his feet up and his laptop on a wooden tray. There is a record player within reach. The walls are white, to show off the art, which includes massive abstracts, movie posters (Casablanca, The Stranger), and aboriginal burial poles. Directly in front of his chair is a black-and-white photograph of the Steak 'n Shake in Champaign-Urbana, Illinois, one of his hometown hangouts.
He believes he's had three more surgeries since the removal of his lower jaw; Chaz remembers four. Each time, however many times, surgeons carved bone and tissue and skin from his back, arm, and legs and transplanted them in an attempt to reconstruct his jaw and throat. Each time, he had one or two weeks of hope and relief when he could eat a little and drink a little and talk a little. Once, the surgery looked nearly perfect. ("Like a movie star," Chaz remembers.) But each time, the reconstructive work fell apart and had to be stripped out, the hole opened up again. It was as though the cancer were continuing to eat away at him, even those parts of him that had been spared. His right shoulder is visibly smaller than his left shoulder; his legs have been weakened and riddled with scars. After each attempt at reconstruction, he went to rehabilitation and physical therapy to fix the increasing damage done. (During one of those rehabilitation sessions, he fell and broke his hip.) He still can't sit upright for long or climb stairs. He's still figuring out how to use his legs.
. . .
There are places where Ebert exists as the Ebert he remembers. In 2008, when he was in the middle of his worst battles and wouldn't be able to make the trip to Champaign-Urbana for Ebertfest — really, his annual spring festival of films he just plain likes — he began writing an online journal. Reading it from its beginning is like watching an Aztec pyramid being built. At first, it's just a vessel for him to apologize to his fans for not being downstate. The original entries are short updates about his life and health and a few of his heart's wishes. Postcards and pebbles. They're followed by a smattering of Welcomes to Cyberspace. But slowly the journal picks up steam, as Ebert's strength and confidence and audience grow. You are the readers I have dreamed of, he writes. He is emboldened. He begins to write about more than movies; in fact, it sometimes seems as though he'd rather write about anything other than movies. The existence of an afterlife, the beauty of a full bookshelf, his liberalism and atheism and alcoholism, the health-care debate, Darwin, memories of departed friends and fights won and lost — more than five hundred thousand words of inner monologue have poured out of him, five hundred thousand words that probably wouldn't exist had he kept his other voice. Now some of his entries have thousands of comments, each of which he vets personally and to which he will often respond. It has become his life's work, building and maintaining this massive monument to written debate — argument is encouraged, so long as it's civil — and he spends several hours each night reclined in his chair, tending to his online oasis by lamplight. Out there, his voice is still his voice — not a reasonable facsimile of it, but his. [Read it here.]
From the New York Times this weekend:
He both writes and thinks about food in the present tense. Ask about favorite foods and he’ll scribble a note: “I love spicy and Indian.” An offer to bring some New Jersey peaches to his summer home here on the shore of Lake Michigan brings a sharp defense of Michigan peaches and a menu idea. “Maybe for dessert we could have a salad of local fresh fruits.”
“Food for me is in the present tense,” he said. “Eating for me is now only in the past tense.” He says he has a “voluptuous food memory” that gets stronger all the time.
“I can remember the taste and smell of everything, even though I can no longer taste or smell,” he said.
That is, he concedes later, a bit sweeping. He can’t remember the food at a French spa prepared by Michel Guérard, who has three Michelin stars. And he can’t recall the last meal he ever ate, because who knew then that surgeons would never be able to fix it all?
But he remembers everything about the food at the Steak ’n Shake. In the hospital, he told me, he ate Steak ’n Shake meals a bite at a time in his mind. Still, what he longs for most is the talk and fellowship of the table.
“The jokes, gossip, laughs, arguments and shared memories I miss,” he wrote in a blog post.
The eating itself is a side note, really. Anyone who has put together a winning dinner party understands that. But food — the cooking and sharing part of it — still means so much to him that he is publishing a cookbook this month. It’s based entirely on meals to be made in a rice cooker. The title is “The Pot and How to Use It: The Mystery and Romance of the Rice Cooker” (Andrews McMeel Publishing, $14.99).
How can a guy without a working tongue write a recipe?
And Ebert's blog and Twitter feed. About blogging, he says, "The blog has opened a new world just when I needed it."