Cancer's new Face: Roger Ebert

Over the weekend, I got a note from Susan with some questions about head/neck/oral cancers. I started digging around on the 'net, looking for information on head, neck, and throat cancers. Any and every search combination of those cancer terms kept returning a familiar name: Roger Ebert.

I'm sure most people know Roger Ebert - one of the best film critics and long time contributor to the Chicago Sun Times. As a kid, I remember watching "Siskel and Ebert" on TV and thinking they had the BEST JOBS in the world - watch movies, eat popcorn, write a movie review! What could be better than that? I'm sure I was caught up with the 'watching' and 'eating' part of the movie review. Being a film critic is definitely not easy; countless hours go into researching, watching, and writing about a movie. His career has spanned decades and he's reviewed thousands upon thousands of movies. He's dedicated to his craft and has had a phenomenal impact on the movie industry.

Ebert's struggle with cancer started in 2002 when he was diagnosed with thyroid cancer. I vaguely remember hearing the news back then. I thought it was sad the Ebert would have to deal with cancer so soon after Gene Siskel's death in 1999 from brain cancer. I lost track of the severity of his illness after 2002. I was surprised to read he needed additional surgery for cancer in his salivary glands in 2003. Cancer invaded his right jaw bone requiring more surgery in 2006. Part of his jaw bone was removed during this surgery causing considerable disfiguration and the loss of his voice. Over the past few years, he's had additional operations in the attempt to restore his voice. He's also lost his ability to eat or drink, and takes all his nourishment through a feeding tube... Yet, through it all, he continues to review movies.

Ebert's always had a way of making me see things in films I'd have missed if I hadn't read his review. His commentary on the lighting, the musical score, the dialog, the bit actors always brings another dimension to a film. There were times when I'd read a review and I'd run right out to watch the movie again, just to "see" what he's written about in such an eloquent and vivid way. He has a way of critiquing a film that peels back layer after layer - you begin to experience hidden emotions and feelings that are right there in the open, on the big screen.

Esquire Magazine just published a lengthy article on Ebert. As a cancer survivor, I struggled to read the entire article. Cancer has a way of striking your soul and haunting you at unexpected times. Reading about Ebert stirred long lost memories and feelings. I finished the Esquire article, sat back on the couch, turned off my computer and started to cry. My heart ached for the man, a bittersweet ache in a way.

I hadn't seen a recent picture of Ebert until I read the article. You might look at his picture and see horror, sadness, pain, fear, disgust, anger..... You might look away. It's not easy to look at a picture of a man missing part of his jaw.

I see courage, tenacity, hope, strength, and beauty. I see cancer but I also see a man, standing tall after years of physical struggles and illness. I see a glimmer of happiness in his eyes. Maybe that's what I've learned from Roger Ebert, the film critic - I've learned to look at Roger Ebert, the cancer survivor, and see beauty and hope. Cancer has a face - it's Roger Ebert.

In an interview in 2007, when Ebert was asked what he thought the paparazzi would make of his post-surgical look, he replied, "Frankly my dear, I don't give a damn." I think that says it all.

Tags: Roger Ebert, cancer, oral cancer, thyroid cancer

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Comment by Janeen on March 3, 2010 at 6:41am: Alicia,
I saw him yesterday on Oprah and was amazed. I too remember hearing that he had cancer but then I never heard anything more about it. I was shocked by his appearance and until they said his name, I had no idea who he was.
His story is AMAZING! He's an incredible man who continues to review movies. He's been through so much but he his attitude and spirit seem unphased by his experience or in some ways even more uplifted. I saw that same beauty and hope that you did. I saw the courage, tenacity and strength. What I saw was nothing less than a miracle.

Comment by Susan M. on March 3, 2010 at 9:53am: What a great post Alicia! I have to agree that when I read the articles over the weekend I too was touched by the encouraging aspects of his story and struggle. I'm glad you brought it here and added your personal perspective.

Health Activists - you can follow Roger Ebert on Twitter at @ebertchicago!

Comment by Susan on March 3, 2010 at 10:53am: Great post Alicia! I didn't know about Robert Ebert's story. What an inspirational and courageous man.

Comment by uvmer on March 3, 2010 at 7:36pm: Nicely written my friend.
uvmer

Comment by e-Patient Dave deBronkart on March 4, 2010 at 12:56am: So. Tough subject, in a way. For me Ebert's story is absolutely inspiring.

I'm going to talk about my own POV for a minute, then switch to Ebert.

When I faced the reaper, I found myself negotiating - with myself, I think; negotiating with my own perceptions of what's really happening. From the very beginning, death was right in my face; as is famous now, my median survival at diagnosis was 24 weeks. (And by the time I found that number, two weeks had passed.)

So while we scrambled for a treatment plan, I concocted ways of looking at the situation that left me an opening to survive. Years earlier a friend had his wallet pickpocketed while on an airport shuttle bus, losing ID and cash and priceless photos of his kids when young. He was upset. I said "Well, one way to look at it is to imagine that you actually got murdered, and as you were dying you thought 'Couldn't we do this over, so maybe I just lose my wallet??'" He said it completely changed his outlook.

So now I negotiated with my own point of view. I learned that many people are found, on autopsy, to have a cancer unrelated to their cause of death. Someone on ACOR pointed out that if you get killed by a bus, you didn't die of cancer. So if you didn't want to die of cancer, you got your wish!

Ultimately I realized that the game is entirely to live long enough for something else to get you first. And, of course, to live as well as you can, in the process.

And that brings me back to Ebert. I first learned of his disease in January, when he wrote that what he misses most is going out to eat with friends - because he can neither eat nor talk anymore.

But he's dealing with it.

Clearly, he has made a deal like "Well, what if I got umpty more years and maybe just, like, lost my jaw?" And just as clearly, he's glad he has those years, and is stopping at nothing to enjoy the hell out of them.

Personally I can't wait until his Hawking-like voice synthesizer is finished, built from snippets of his own often-recorded voice. I absolutely expect that we'll then hear some version of his voice again, reviewing the movies. Won't that be incredible? Won't that be an unbelievable "You can't stop ME, cancer" moment?

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And all of that in no way diminishes what it's like to face the reaper. My task, as go around speaking at conferences (like the HIMSS health IT conference this week), is to wake people up about the fact that bad news is likely to smack their family in the face someday, and when it does, they'll want healthcare to work really reliably. In the process of doing that, I revisit those scary first days. Often I choke up. It was a Not Fun time.

And boy is this all a testament to the human spirit in the face of adversity. You know that better than I.

Comment by Ellen S on March 7, 2010 at 12:35am: Roger Ebert inspires me too. His is the face of a warrior. His photo, a picture of primal victory. Cancer may have claimed a few of his parts, but the sum of the man has very little to do with anything physical.

Personally, I think he's beautiful...

Cancer's new Face: Roger Ebert

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