The Diving Bell and the Butterfly, by Jean-Dominique Bauby (which was recently made into a major motion picture that I have not seen yet), is essentially a memoir. But way different than most memoirs. It is a recounting of tragedy by its victim, but told with a triumphant spirit that defies the tragic end that looms. If the title hadn’t already been used, I might even refer to this book as a heartbreaking work of staggering genius.

For those of you who don’t know, Bauby was 43 years old in 1995 and was the editor of French Elle magazine — a well-traveled journalist and father of two young children who had lived quite an interesting life up until December of that year, when he suffered a massive stroke that left him with “locked in syndrome”, in which he was completely paralyzed except for his left eyelid (which he could blink). But unlike most forms of paralysis, he could feel his body — he just couldn’t move it. Locked in syndrome is what gives the book its name; Bauby refers to his condition as like being locked in a clear diving bell, unable to interact with the outside world, but with his mind behaving like a butterfly, flitting freely along inside the diving bell.
Other elements of his particular condition are worth noting as well. For instance, his right ear was completely blocked, but his left ear amplified and distorted distance noises. It was like having a bionic ear that allowed him to hear the slightest distant noises, but not always in a good way. If a tv was left on, or if bells rang in the distance, it could be an ear-piercing experience that he could do nothing to stop. And the condition in general left him at fate’s mercy because he could do nothing to correct what would normally be to you or me nothing more than tedious little annoyances, such as covers bunching up under him. Let alone what happened when his catheter came loose (which happened at least once), and he became uncomfortably drenched with no way of informing his caregivers.
The book was dictated by Bauby during his stay at the Naval hospital in Berck-sur-Mer, on the French Channel coast. He dictated the book, letter by letter, to a speech therapist at the hospital, using a special alphabet layout in which the letters are arranged in order of their frequency of use in the French language; she would read off the letters in that order until Bauby would blink his left eye, signaling that she should note the letter at which he stopped her. And the book gave me chills as I read the story, thinking about it in the context in which it was transcribed.
Bauby’s wit and sense of humor are in full effect, despite his condition. He talks of taking vacations in his mind, in which he re-travels to the corners of the globe with no physical or financial restraint. He jokes about Hong Kong, a place he has never actually visited, but which was the site of a global conference hosted by Elle. In describing Hong Kong, he references the Felix Bar in the Peninsula Hotel, which was decorated by the French designer Philippe S., and he says:
The fact is, my likeness adorns the back of a chair in that lofty luxurious watering hole. I, who hate to have my photo taken, was one of dozens of Parisians whose portraits Philippe S. incorporated into the decor. That photo, of course, was taken some weeks before fate turned me into a scarecrow. I have no idea whether my chair is more or less popular than the others, but if you go there, for God’s sake don’t tell the barman what happened to me. They say the Chinese are superstitious, and if my true fate were known, not one of those charming little Chinese miniskirts would ever dare sit on me again.
Bauby also references the sinister character Noirtier de Villaforte, from Alexander Dumas’s The Count of Monte Cristo, who was described by Dumas as a “living mummy”. In fact, Noirtier — who was slumped in a wheelchair and could communicate only by blinking his eye — was, according to Bauby, literature’s first, and so far only, case of locked in syndrome. Bauby had recently re-read that classic, and had toyed with the idea of writing a modern version of it. Only to be stricken with that rare condition that plagued one of its villains. That’s not necessarily irony, but it’s certainly tragedy.
Bauby died just two days after the French publication of his book. But we are all fortunate that he was able to muster the strength and the courage, and obtain the assistance necessary, to share his thoughts and his story before he passed away. It is a wonderful sad book.