The Diving Bell and the Butterfly

A well written and well made movie, based on an extraordinary true story:

At the age of 43, on December 8, 1995, Bauby, editor of ELLE magazine, suffered a stroke. When he woke up twenty days later, he found he was almost entirely speechless; he could only move his mouth a little, grunt, and blink his left eyelid.

Despite his condition, he authored the book The Diving Bell and the Butterfly by blinking when the correct letter was reached by a person slowly reciting the alphabet over and over again. Bauby had to compose and edit the book entirely in his head, and convey it one letter at a time.

The movie reminded me of Mar Adentro, another true story, as well as the classic Johnny Got his Gun (and read the book, even if you disagree with it's politics. You can buy it for a pound here.)

And it might say something about me, but the thought that kept torturing me throughout watching The Diving Bell and the Butterfly had to do with the communication system devised by Bauby's speech therapist:

The entire book was written by Bauby blinking his left eyelid. An amanuensis repeatedly recited a frequency-ordered alphabet (E, L, A, O, I, N, S, D ...), until Bauby blinked to choose the next letter. This made dictation more efficient. The book took about 200,000 blinks to write and each word took approximately two minutes.

Having someone recite a frequency-ordered alphabet is, of course, not efficient at all - unless your sole purpose is to minimise the number of required blinks, a minor consideration in this case.

I can think of a hundred different schemes to arrange letters so as to make the whole process of communicating letters more efficient, ranging from morse code to a mobile-phone style categorisation of letters.

Keep in mind that Bauby's ability to see, hear and think were not at all impaired, and he could easily master any such scheme very quickly.

So, a little more thinking going into this would have allowed Bauby to increase his speed of communication with the outside world and, yes, his quality of life dramatically. As simple, and as sad, as that.

by datacharmer | Wednesday, February 06, 2008
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  1. matthew Says:

    I'm completely in agreement wrt both your opinion of the movie, and of the transcription scheme. I actually found it distracting, because I kept coming up with better/quicker ways of choosing the letters --why didn't they incorporate eye direction?!