the diving bell and the butterfly

An ordinary day. At seven the chapel bells begin again to punctuate the passage of time, quarter-hour by quarter-hour. After their night's respite, my congested bronchial tube once more begin their noisy rattle. My hands, lying curled on the yellow sheets, are hurting, although I can't tell if they are burning hot or ice cold. To fight off stiffness I instinctively stretch, my arms and legs moving only a fraction of an inch. It is often enough to bring relief to a painful limb. My cocoon becomes less oppressive, and my mind takes flight like a butterfly. You can wander off in space or in time, set out for Tierra del Fuego or for King Midas's court. You can visit the woman you love, slide down beside her and stroke her still-sleeping face. You can build castles in Spain, steal the Golden Fleece, discover Atlantis, realise your childhood dreams and adult ambitions. 

I've just finished reading this wonderful true life story by a man whose only means of communication is to blink. One blink means no; two blinks mean yes. Bauby had 'locked-in syndrome' since his brain stem stroke, a condition that made him a quadriplegic - trapped in a motionless body but alive with a beautiful mind. For the past two weeks, Bauby was with me as I entered his world on the tube. I read each word in a way I don't usually do for novels, as I realised how much effort it must have taken for him to express each and every letter. This was a young chap (father of two young kids) whose life completely misfired all of a sudden, yet he could reflect all of life's misgivings with such wry humour that made me smile and sigh at the same time. He communicates using an alphabet board. Not a usual ABC sort - but one that arranges letters according to the frequency of its use in the French language. So the 'listener' has to read out each letter on his board and watch out for his blinks that will indicate 'Stop, that's the letter I want'. And together, both Bauby and the listener spelt out and inferred what he wanted to say. 

Humour might get lost through this exchange, but it was the only thin thread through which Bauby was able to maintain his connection to the world that forgot him too easily. It's a Conversation in which was unsaid probably said more. The alphabet board was set up by his speech and language therapist actually. In a lovely way that reminds me of how meaningful my job will be, Bauby blinked:

The identity badge pinned to Sandrine's white tunic says 'Speech Therapist', but it should read 'Guardian Angel'.