The Diving Bell and the Butterfly

Tucson (5/4/08)

“The Diving Bell and the Butterfly” won an Academy Award as the Best Foreign Film for 2007. And its director, Julian Schnabel, won the Best Director Award at Cannes in 2007. Schnabel is better known as a painter, the one who used to attach dishes to the surfaces of his canvases. But “The Diving Bell and the Butterfly” is his third movie and all have been critical successes. The other two are “Before Night Falls” and “Basquiat.” I am not sure if he is still painting or not. If not, his second career is well launched.

The opening sequence to “The Diving Bell and the Butterfly” is a challenge to the audience: it’s frightening because you are locked inside the skin and perception of a man who is discovering he has had so serious a stroke that it has turned him into a quadriplegic. His only connection to the outside world was one eye. It was a terrible shock to discover you have what a doctor calls “locked-in syndrome,” and since the viewer is seeing within the framework of that one eye and hearing the patient, Jean-Dominique Bauby, talk to himself since he can think but not vocalize his thoughts, one has a real feel for what kind of isolation goes with the syndrome. In short, it is scary and profound. As viewer you have to overcome your own fear of a stroke, where it can leave you, like stranded alone on that desert island of the mind. (Bauby was 42 when he had his stroke.) But, fortunately, the film moves on to other perspectives, making it somewhat easier to watch.

Instrumental in Bauby’s summoning his will to live and to accomplish something despite the his handicap are ‘Three Graces,’ three women, all therapists, who vow to help him communicate and even to write a book about his experience. They do it by means of his blinking eye, a binary system of one and two blinks that identify the letter he wants the therapist to write down and thus how they build words, sentences, and paragraphs—a book. They use a chart that arranges the alphabet according to letters used the most and the least in a three-tier arrangement. It was a tedious system but they had nothing else to do. Bauby would wake at 5 AM and figure out what he wanted to say that day, and the therapists would come in at 8AM, and the two of them would work the rest of the day. The movie also makes clear that his memory and imagination were not crippled in any way, providing him with a lively and stimulating inner cinema on his desert island of the mind.

The movie was just released on DVD.

And now I feel compelled to include a personal note. The movie made me reflect on the women who helped me get through heart surgery a year ago. First of all there were the professional women, the nurses and nurse’s aides. Secondly, but not less in importance, were my ‘Three Graces,’ my wife and two daughters.

Several of the nurses were so kind and sweet I can’t say enough about them and how their care and attitude lifted my spirits when I sorely needed a healing boost. The surgeon was, at best, a peripheral figure, someone I saw for 10 minutes the week I was in the hospital after quadruple by pass surgery. It was the support of the women that got me through the experience AFTER the surgeon did his thing. A few were young and attractive too, which was a definite bonus, as it was for Bauby. Two were older matrons with plenty of savvy. I nicknamed them all ”The Love Squad.” I was glad to see any of them night and day. They gave me massages, they were at my beck and call, they took walks with me, and they talked to me about many things. Two of the gals had an art background, which was a real surprise. I had one of my daughters bring in some of my drawings. Naturally, they all praised me to the sky to make me feel good.

There was one gal I don’t think I’ll ever forget. She was a nurses’ aide; let’s call her Carol. She was 36 years old, raven haired, and had an irresistible bubbly personality, one of those women who light up a room when they enter. She was a real look-a-like of the French actress Juliette Binoche, a little heavier perhaps, but by no means Rubenesque. Her background was a surprise: she fought in the Bosian war for five years, against the Serbs. Five years! She’s lucky she got out alive after that long. She was married to a Tucson man, a Mexican American, probably a soldier she met during the war. Her sunny personality might have resulted from surviving the war. From here on out life was gravy. I will always be a little bit in love with her. She was a definite curative influence, a balm for body and soul.

My Three Graces were wonderful too. It was a trial for my wife, Carolyn Sue, because she dislikes hospitals and the medical establishment. But she was a trouper and came every day for at least a couple of hours. She was suspicious of doctors and had had some angry run-ins in the past, when I was in the hospital with a bleeding ulcer in 2000. But she brought me whatever I wanted from home and her quirky humor was always a pick-me-up. I appointed my oldest daughter, Nasima, who has a Masters degree in Medical Sociology, as my chief advocate. She had made it her business to know about doctors and hospital and procedures, and she did a great job for me. My younger daughter, Kaia, came to see me often and stayed as long as she could. She was 8 months pregnant at the time. All three of them were a pleasure to have around and buoyed me up every time they walked into my room.

One of the first things I did when I went home was write a letter of appreciation to the Supervisor of Nurses, telling him how great the staff had been. I mentioned each woman by name and I was pleased to hear that my letter was included in the nurse’s monthly newsletter. Those women made an experience I was not looking forward too much better than I expected it to be. When I reconsider the experience in my memory, I don’t think so much about the fact my chest was ripped open and strangers poked around inside, or about the pain and discomfort I felt for a month, but what is my paramount memory is ‘The Love Squad’ and what they did for me. Bauby and I were both very lucky to have been served so well.