Monday, February 21, 2011

the diving-bell, the butterfly and the lucky man

I spent a lovely day with Iris and Rosa today (even though Rosa was a little under the weather). In the afternoon, despite the rain, we walked to the harbourside and visited SS Great Britain. We enjoyed fruit juices and muffins in the café and we chatted and laughed our way through the afternoon. It was all effortless and hugely enjoyable - simple pleasures!
After Stuart had collected the girls at the end of the afternoon, I continued to read Jean-Dominique Bauby’s beautiful and remarkable little book “The Diving-Bell and the Butterfly” - you may have already come across it yourself. After suffering a massive stroke, the author was paralysed from head to toe (locked-in syndrome) and he “dictated” the book using his left eyelid.
Within minutes of the girls’ departure, I read the following extract (Bauby had been playing “hangman” with his 10 year-old son) and it made me realise just how fortunate my life has been…. and just how much we take for granted:
My heart is not in the game. Grief surges over me. His face not more than two feet from mine, my son Theophile sits patiently waiting – and I, his father, have lost the simple right to ruffle his bristly hair, clasp his downy neck, hug his small, lithe, warm body tight against me. There are no words to express it. My condition is monstrous, iniquitous, revolting, horrible. Suddenly, I can take no more. Tears well and my throat emits a hoarse rattle that startles Theophile. Don’t be scared, little man, I love you.”
I love you.
Photo: Rosa+Iris eating their Christmas lunch!

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