I first read this extraordinary book when it came out in 1997 and somehow it seems to be the perfect book to read again at the end of 2020 which has seen so much tragedy throughout the world. Jean-Dominique Bauby was editor in chief of Elle magazine in Paris when a brain stem trauma put him first in a coma and then as he comes round from that he is completely paralysed, able to move only his left eyelid, his mind however was still as active and alert as ever. Locked in Syndrome is fortunately rare but a book written from inside the prison of an body unable to move is even rarer, that the book is this good is probably unique. The diving-bell of the title refers to his immobile but still painful body whilst the butterfly represents his thoughts flying free, beyond the confines of his hospital room. The book was dictated by Bauby winking as letters were laboriously read out one at a time by his assistant, Claude Mendibil, and she then slowly composed the words and then checked that each one was correct. The chapters are short but each one took days, if not weeks, to dictate one letter at a time as Claude repeatably read out
E S A R I N T U L O M D P C F B V H C J Q Z Y X K W
The sequence of letters is not alphabetic as that would have taken too long, instead they are in order of frequency in French, by comparison in English the first twelve letters would be ETAOINSHRDLU.
The chapters vary in subject from hopeful, when he feels a little progress has been made or he is recounting a good day going along the seafront at Berck-sur-Mer, which is where the hospital is, in his wheelchair to sad when things are not going well or the small frustrations at his inability to communicate to all but a handful of people who can use his letter system, there are also two chapters recounting dreams he has had which are comic and moving at the same time. Because the chapters are short you can pick the book up whenever you have a spare few minutes and enjoy the next beautifully written passage and feel that you are catching up with his oh so slow progress. It should be a depressing read, but it isn’t, each small victory over his condition is celebrated and he is funny in the good times.
It is only in the penultimate chapter that Bauby addresses the events of Friday the 8th December 1995 when his life was completely turned upside down. As he says in the book he knew he needed to cover this but was avoiding it for as long as possible. The day starts so normally with time in the office before heading off to collect his son for a trip to the theatre and a meal before spending the weekend with him. He had separated from his wife a few months earlier and had not spent quality time with his son since then. Sadly soon after collecting Théophile in what was fortunately a chauffeur driven car he started to feel unwell and collapsed with the massive stroke that would put him in a coma for twenty days
Bauby died on the 9th March 1997 just two days after the first edition of this book was published in France and sixteen months after he first slipped into a coma but he left us a great book of tragedy and hope. In the final short chapter he was making slight progress with speech training and could grunt (his word) along to a simple tune and although this was a tiny step forward you feel his joy at this triumph over adversity but sadly he succumbed to pneumonia before getting much further.