I watched the movie “The Diving Bell & The Butterfly” last night. I was recommeded this movie by a friend, Etta, after telling my her about one of my clients who cannot speak and can only nod his head. I was explaining to Etta about how I communicate with this client by asking only “yes” or “no” questions. This movie really moved me. I’ll tell you a little bit about it;
This is a masterpiece of a movie about Jean-Dominique Bauby, a French fashion magazine editor who in 1995 suffered a massive stroke. He slipped into a coma that lasted 20 days and awoke to find himself paralyzed from head to toe. He was diagnosed with a rare neurological disorder called locked-in syndrome.
Bauby retained vision and hearing, and his mind continued to function perfectly, but his body was almost completely paralyzed. Astonishingly, he succeeded in writing an entire book (that went on to become a bestseller!), although he could blink only his left eye. A speech therapist suggests a system of communication where they arrange the alphabet in the order of most frequently used letters, then Bauby chooses the letter he wants by blinking his one eye when the speech therapist reads it aloud. Using this method, word by word, blink by blink, he dictated his memoir, The Diving Bell and the Butterfly, which was published in 1997.
Before his stroke Jean-Dominique led a life of glamour, pleasure and self-indulgence as the editor of Elle magazine. He was a loud and opinionated, just like my client, whom I know has so many profound and verry deep questions. I know that my client longs to have fun and controversial conversations, and I want so badly to be patient enough to engage in this sort of conversation. But, boy it is taxing.
This movie has prompted me to be even more patient with my client, by allowing him to speak more than I already try to. This movie demonstrates the painstaking repetitiveness that is absolutely necessary in order to give people who are non-verbal all of the freedoms of speech that they deserve. You can imagine after going through the alphabet three times, to obtain three letters, that if you got one of the letters wrong it takes quite a lot of patience to go backwards and figure out where you went wrong.
The meaning behind the title is beautiful. Bauby felt as if his body were a “diving bell” a dead weight of a body sinking further and further underwater, while his mind was a “butterfly.” He felt that his mind could soar into whatever parts of the world that he wanted. His imagination was colorful, exciting, and light as a feather. Combine the two and you get “The Diving Bell and The Butterfly,” a dead weight of a body married to inspiration and a vivid imagination.