I watched a film last night. Just by chance I saw the promo for it while watching the television news service earlier in the week. I had heard something about the film a couple of years ago then forgotten about it, until now. The film was “The Diving Bell and the Butterfly”, which is the story of Jean-Dominique Bauby, the French Editor-in-Chief of Elle magazine. At forty-three Jean-Do, as he was known to his friends, had a stroke which left him completely paralysed other than the ability to blink his left eye. He suffered what is called “locked-in syndrome” where a person’s completely functional mind is locked in a body which no longer works. I liken it to being buried alive: shudder the thought. But here this man was, in that condition. With the aid of his speech therapist,Jean-Do was able to communicate by blinking when the letter of the alphabet he wanted was reached by someone reciting them in order. That way he could build words and at least get across what he was thinking.
Before his stroke Jean-Do had a contract to write a book. He had plans to write about the Countess of Monte Cristo, same story of revenge, but with a woman as the lead character and set in the modern day. He decided to still write a book, but as an account of what his life was like, trapped in a non-functioning body. The publisher found him someone who was prepared to take the “dictation” one letter at a time. At one point in the film it is made clear that the process was extremely long and tedious. At least in the beginning it took about 5 hours to write one page
The closing scene opens with him asking, through his one letter at a time process “Do we have a book?” The ‘secretary” held up a copy of the published work for him to see. He had done it. Amazing story.
What really struck home for me, however, were a number of touching moments when, with the aid of a voice over, Jean-Do’s thoughts were shared throughout the film. He made the point that although he was no longer able to experience things with his physical body, much like being in a deep-sea diving bell, he still had his memories and imagination which gave him the freedom of a butterfly to experience any thing he chose, anywhere, any time.
Truly a touching film, “poignant” the critics called it. I have his book on my short list of must reads.
As i reflected on the film I put myself in Jean-Do’s place. How would I cope if something like that ever happened to me? My wife and I have discussed my wishes should something ever happen to me. It was quite natural for us because she works in aged care and has to deal with death and dying in her daily work. I remember at the time of our discussion, the point at which I wanted no further active treatment would be when I could no longer communicate. Watching the film took me back to that discussion.
Here was a man, who, but for the training and insight of a speech therapist would have been trapped for the rest of his life with no way of relating to the world outside his body. Yet, the tone of the film was very positive Though everything we take for granted had been taken away from him, Jean-Do was very much alive. Such is the tenacity of the human spirit. Even in our worst possible moments, surrounded by destruction and devastation, that little flame of life burns bright. That for me is the inspiring story of Jean-Dominique Bauby. Given his situation, Jean-Do’s story surely is the one that ranks as “things couldn’t possibly get any worse.” Yet despite that or, perhaps more, because of it, he was able to share his inspiring story with the rest of the world. He died only days after his book was published, but his legacy lives on. Rest easy Jean-Dominique Bauby your work here is finished.
If you are a lover of the ocean and spend any time in Egypt, then you owe it to yourself to try the diving and snorkeling that are available in the Red Sea. Heading to the beach of the Red Sea is an absolute essential, as the pristine waters...
