Wednesday 2 May 2012

One Man's Opinion: The Diving Bell And The Butterfly

When I bought my copy of The Diving Bell And The Butterfly it was for research purposes. I intended to write about (and am writing about) someone with locked-in syndrome. 

To help me decide that this was the book for me, the publishers had generously placed on the cover the recommendation from someone at the FT  who had said it was 'one of the great books of the century'.

It's certainly a very moving book and, should you want to dig into what is said, a profound one.  Reading about someone who can't move their body, has hearing issues and can only use one eye (for seeing and for blinking out the story) it's difficult not to think about life and it's many facets.

The story is a surprisingly light read in many ways, a very easy and gentle passage from beginning to end.  The style is descriptive and personal, yet slightly removed from real anguish and joy.  Hard not to be impressed by Bauby's philosophical stance.

Here's a quote about when he first sees his reflection after the massive stroke that left him in his condition:

'Not only was I exiled, paralysed, mute, half deaf, deprived of all pleasures and reduced to a jelly-fish existence, but I was also horrible to behold.'

There's a rather dry humour in the statement and it's a humour than runs right through the piece.

My favourite chapter is about Bauby and a colleague of his who spend a day at the races.  The newspaper they run has a sports reporter who knows his horses and the whole of the office is relying on the duo to get their bets down for the big event.  The section tells a lot about who Bauby was before the stroke as well as much about how he was afterwards.

I was struck by the tenderness and also by the absolute frustration of a man who has young children and how the love they share is tested and stretched.  Not to mention that he knows he shan't see his father again - young Bauby is in his prison and his dad is too frail to leave his apartment.

There's a reminder right through this that whoever we may be, it's likely that there'll be a time when all our memories are distilled into short measures.  The people we have been will have faded and we'll have to manage to make the most of what we are left with and what we remember.  It's a reminder that when a person is wheeled passed us that however misshapen or twisted the body might be, the mind might be sharp and active on the inside.  And if we need to treat the most vulnerable members of our world with respect, shouldn't we also try and apply such principles to everyone?

I work in a school with an 'Exceptional Needs' unit and try to be smiley and positive every time I see the kids there.  What I feel I need to do from now is to take that a little further in terms of the communications I offer.

Another thing occurred to me as I was reading.  It provided an excellent mirror to hold up to Stona Fitch's excellent 'Senseless', highlighting just what a well-written tale that is.

It took only a couple of hours to complete and is broken into very neat chapters (I guess the act of blinking out a story is exhausting), but I'd recommend it to anyone who's feeling a little sorry for themselves, anyone who likes descriptions that border on the poetic and anyone who has ever wondered just how bad a Sunday can get.

It's not even close to being the greatest book of the century.  Maybe not even that close to being the best book of its year, or even month.  Still, I think you might benefit from a read of it.  Digest it and go out there and try and make the most of your day.  I for one will be trying.


  1. I missed the movie and didn't even realize it was based on a book. How do people endure such things. I wonder where my need to live and such infirmities meet? What could or would I tolerate?

  2. I missed the movie, too, Patti. I think I'd rather have the book. What we could tolerate is something we'll hopefully never have to fully explore. In spite of this man's condition, he's almost up-beat at times. Memories can be powerful medicine - we should all save them up for the fallow periods.