The Diving Bell and the Butterfly

You may have read Jean-Dominique Bauby’s book “The Diving Bell and the Butterfly” or seen the film based on it. It is a story about his experiences of “locked-in syndrome”, dictated by him using only one of his eyes. I read the book three years ago in a hospital when I was very weak from M.E. and had spent several weeks mostly bedridden. Because of my own circumstances, the metaphor of the diving bell and the butterfly really spoke to me: I felt it described how my M.E. felt like.

Physically of course, my illness was not even close to being as extreme as Bauby’s full paralysis (after all I could dress myself, eat and even walk a few meters to the bathroom). However, my body felt so heavy, as if I had lead weights attached to my arms and legs, so the idea of being physically trapped inside a diving bell did not seem too dissimilar. And when the body is severely restricted in what it can do, and the physical environment does not change at all from one day to the next, it is the mind that starts taking over. In the absence of any other stimulation the mind, free like a butterfly and able to go to all those places that the body cannot, starts making its own entertainment.

I am not saying all this to get the sympathy vote, not at all. What I am trying to say is far more positive than that. What I found was that when I spent most of my time resting in bed, effectively in a kind of sensory deprivation, my mind and imagination really woke up, and started producing wonderful thoughts and images, whether ideas for art work or perhaps business ventures, wish lists for holidays or other fun things to do. And it hasn’t really stopped since then, even though physically I am much better now. So many wonderful and creative thoughts, every day – it’s the best part of having such a quiet life.  

I have heard many people with M.E. say that they discovered creativity during their illness. That is exactly what has happened to me. It might not have happened without my “still life” and all the silence that has set my mind running. That is a great gift.

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