Monday, May 22, 2017

Looking for Light at the End of the Tunnel

"'The Diving Bell and the Butterfly' is a film about a man who experiences the catastrophe I most feared during my recent surgeries: 'locked–in syndrome,' where he is alive and conscious but unable to communicate with the world. My dread, I think, began when I was a boy first reading Edgar Allan Poe's 'The Premature Burial' at an age much too young to contemplate such a possibility."

Roger Ebert

When I was 13 years old, I broke my right arm and had to wear a cast for eight weeks.

I'm right–handed, which means I had to function without the use of my dominant arm for two months. It was during the school year, and it was extremely challenging for me to try to write with my left hand.

I adapted the best I could, and my teachers were understanding. And, after eight weeks, I was permitted to use my arm again.

At least once in our lives, I suppose, everyone is faced with the deprivation of something that one has come to take for granted. Usually that deprivation is limited in some way — and temporary.

And that is the key point, isn't it? It is temporary. I didn't like wearing a cast or having to try to do things with my left hand for eight weeks — but I knew it wouldn't last forever. I knew there was light at the end of the tunnel. I could see it. With both eyes.

And that was the point. There was light at the end of that tunnel.

It's been a long time since I broke that arm, but I have thought about it frequently over the years, often in the context of incarceration. When I worked as a newspaper reporter, I covered the police and courthouse beat for awhile, which meant I had to cover trials from time to time. Those trials involved offenses that, if the defendants were found guilty, would mean time in prison.

I'm not sure when I started thinking about my broken arm in the context of incarceration, but I kind of feel like it must have been when I was covering trials. It has continued to this day.

Some of the offenses carried lengthy — but limited — sentences; people convicted of such offenses knew they would spend several years in prison, but their incarceration would end someday.

But most of the trials I covered were murder trials — and, while there were exceptions, most of the defendants knew that, if convicted, they could expect to spend the rest of their lives in prison. There would be no light at the end of that tunnel.

Jean–Dominique Bauby, editor of Elle magazine, was not convicted of a crime, but he faced a kind of life in prison when he suffered a massive stroke in December 1995 that left him with a condition known as "locked–in syndrome" a condition in which the patient is almost entirely paralyzed but is, nevertheless, aware of what is happening around him/her and able to communicate only through eye movement and blinking. In more extreme situations, the eyes are paralyzed as well.

In this condition, Bauby dictated his memoir through a tedious eye–blinking procedure in which his assistant would repeatedly recite the alphabet until he blinked to indicate which letters came next. It took an average of two minutes to dictate each word.

The memoir was turned into a movie that made its debut 10 years ago today at the Cannes Film Festival. The book and the movie were titled "The Diving Bell and the Butterfly." Director Julian Schnabel was rewarded with Best Director at the Cannes festival.

Schnabel, by the way, was nominated for Best Director at the Academy Awards but lost to the Coen Brothers, and the movie was nominated for three other Oscars as well.

"Like a sailor seeing the shore disappear, I watch my past recede, reduced to the ashes of memory."

Jean–Dominique Bauby (Mathieu Amalric)

To a casual observer, Bauby appeared to have a wonderful life. He was editor of a popular magazine. He had a beautiful ex–mistress (Emmanuelle Seigner), with whom he had three children, and a beautiful new mistress. But then he had his stroke.

Most of the muscles in his body were useless after that, but his mind remained clear, and his imagination was strong. I'm a writer, and I can say that many things could be taken from me and I could manage somehow, but if I no longer had a clear mind and a strong imagination, I would not want to keep going.

Bauby had both of those things, but he still didn't want to keep going — at first. The writer within him knew there was a story that needed to be told.

That story was rich with ironies.

A few days before his stroke "Jean–Do," as he was known, was visiting his frail 92–year–old father (Max von Sydow) and gave him a shave because he could not shave himself.

After Jean–Do's stroke, his father observed in a phone call to his son (with his assistant interpreting his eye movements for his end of the conversation), that they were both locked in — he was physically unable to leave his apartment and his son was locked inside his body.

That was his perception. He wanted to be with his son but he couldn't. Others couldn't bring themselves to face the new reality. Their perceptions frightened them too much.

We all face barriers in our lives. Jean–Do's father faced a physical barrier. The others faced an emotional barrier.

That is certainly something I have experienced first hand. Most of the time I have not known I was seeing someone for the last time, but there have been a few times in my life when I have seen someone and I knew — usually because of a medical condition — it would be the last time, but I could never bring myself to say the word goodbye.

Perhaps it seemed too much like giving up. I regret that, but I don't regret feeling afraid. It is a natural, honest and normal human response. It is all a matter of perception, I suppose.

All my life I have heard that perception is reality and that may never have been more true than it was when applied to the life of Jean–Dominique Bauby.

The stroke was the reality, but it was the perception that colored the picture for Bauby and those around him. He saw his affliction as being like one of those heavy diving bells that divers once wore to get a constant supply of oxygen when they were in the water. Bauby felt the diving bell was dragging him to the bottom of the sea.

But many of those around him did not see a diving bell. Instead they saw his spirit as a butterfly that was rising above it all.

Thus the name of the book — and the movie.

And as grim as the topic may sound, it really is a rewarding movie experience.

I want to read the book.