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Friday, October 25, 2024

"The Diving Bell And The Butterfly" by Jean-Dominique Bauby

 

My wife Candice and I just finished reading this fine little book by Jean-Dominique Bauby in the manner in which we have been reading books regularly for several years now.  While Candice washes our breakfast dishes, I read aloud from whatever book we are reading at the time.  When she finishes washing the dishes, I stop reading and rinse them.  I put them away later.  We alternate who chooses the next book we read, and this one was her choice.  Our previous book which I chose was "Band Of Angels", a novel by Robert Penn Warren which I wrote about at this link.  For us, this book is personal.  Bauby was the editor of "Elle", the French fashion magazine, when he suddenly, and apparently without any warning, suffered a severe stroke in his early forties which left him with "Locked In Syndrome".  Locked In Syndrome is a condition due to a stroke or other form of brain damage which leaves the patient completely paralyzed, unable to move or speak, and without any realistic hope of recovery.  Usually, the patients mind is working perfectly well inside a completely dysfunctional body.  Sometimes, as in Bauby's case, the patient is able to blink one or both eyes which is utilized to facilitate a form of communication.  Bauby, his friends, family, and providers were trained to use an alphabet system with the letters of the alphabet arranged in order according to their frequency of use in French, his native language.  The person communicating with such a patient is required to read the letters one at a time, wait until the patient blinks in response to a letter, write that letter down, and repeat the process until a word is spelled.  Then a sentence, and thus a conversation.  Bauby and a young female employee of his publisher utilized the system for him to write this book which is, understandably, only 132 short pages of about 175 words each for a total of approximately 23,000 words. Admittedly, that is a small word total for most adult non-fiction books.  But for a book which was produced using the method described above, it is a phenomenal piece of work for both Bauby and his publisher's employee.  


 

For my wife and I, the book is a personal matter for two reasons: 1) my wife has been in a wheelchair for about 26 years, and in a power chair for about 5 years due to a rare genetic disorder; 2) when I was an undergraduate at Morehead State University, I had a professor whose husband, a retired psychiatrist, suffered a massive stroke which left him with "Locked In Syndrome".  On one occasion, my former professor told me the story of her husband's stroke and eventual death.  They utilized some such system of eye blinking to discuss his condition, absolutely devastating prognosis, and their possible options in the matter.  Admittedly, they were a couple who were unusually prepared by their professional lives to deal with such an issue in their private lives.  Her husband was a retired medical doctor and psychiatrist who had run a large state operated mental health treatment system.  His wife was a doctoral level professor of social work who had also worked in mental health setting in the past.  But, as she told me the story, it was obvious that she was still totally devastated by the decision they had reached in his case.  They had discussed their problem and their options, as I described above, and her husband chose to be disconnected from life support and to die rather than to linger for whatever time the health care system could have kept him alive.  Admittedly, my wife and I have a very unique perspective from which to assess Bauby's incredible little book.  


 

The book is written in very short chapters, very little pages, and is an incredible read both for its brevity and its breadth in how much information it contains.  Bauby says little until almost the end of the book about the actual event of his stroke.  It moves from short segments about his life in a state government operated system for very difficult neurological cases in France to segments about his life before his stroke to other segments about how he spends his time when he is alone in his hospital bed.  He discusses his creation of fantasies about what had previously been his goals and dreams, his life with his young children and wife, and his professional life as the editor of a major French fashion magazine.  This is a book which a good reader can finish in a single sitting.  But it is also a book which can require some time between sittings for the reader to absorb and process the information it contains.  This is an incredible book and well worth reading by every reader  



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