The Simon Heng Column

From time to time, people have suggested that I write down my experiences as a disabled person. And, from time to time, I would like people to have some idea of what it is really like to acquire and live with a severe impairment, how it has affected my relationships with family, particularly my children; the many ways in which it has changed the way I see the physical and social worlds, for example.

At times like these, it’s good to point out that somebody has already written about something similar, and some of the thoughts that they provoke, much better than I could.  I’ve been re-reading The Diving Bell and The Butterfly, by Jean-Dominique Bauby.

Bauby was editor-in-chief of the French edition of Elle magazine. At 45, he had a massive brain-stem stroke, which left him in a coma for months, after which he could control the movement of his left eyelid only.

His speech therapist introduced him to a version of the communication board, which will be familiar to anyone who has worked with people with communication difficulties. This version  consisted of the letters of the alphabet, rearranged so that the most frequently used is at the beginning, and the least used at the end of the list.

A person would read out each letter in turn, and he would blink when they arrived at the one he wanted. In this way, words and sentences were slowly, painfully built up: he says that he spent the time between sessions composing and editing his paragraphs ready for dictation. And I thought it was difficult enough using voice-recognition software.

The result of this was a short book, not much more than 100 pages long, made up of short chapters, each of which contains an incident or memory to demonstrate how his life and his
perspective on life changed.

I can identify closely with many of his sentiments. From the way it was received at the time of publication, Bauby succeeded in striking a chord in many people who have not shared our experiences.

Read it.

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