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I love to read and sadly don't do it anywhere near as often as I should. It takes me a long time to find a book that really captures my imagination.
I first came across this book in 2006, when a friend at university brought it up in conversation. She's the kind of person who loves to read books that pull on your heartstrings or deal with difficult, hard-hitting subjects - not the kind of reading material that I actively seek out. My friend thought that this book might appeal to me because it was written by (and about) a Frenchman.
Anyway, it's fair to say that I didn't really think much more about it, until about a year later, when I stumbled across an article on the BBC about a film. The title rang a bell and I soon realised that it was based on the very same book my friend had recommended to me. The director, Julian Schnabel, was originally planning to make the film with Johnny Depp as the main character, but when Depp had to withdraw due to commitments with Pirates of the Caribbean, Schnabel decided that the only way forward was to make the film in French. He resisted a lot of pressure for the film to made in English, and even went as far as learning French in order to make the film. It was at this point that I realised that this could be something special.
I have since read the book in French and English and I have also seen the film.
You could say that Jean-Dominique had it all - he'd carved out a career in journalism, and was editor-in-chief of Elle magazine and though his marriage had broken down, he was in a new relationship and was he was father to two young children, Théophile and Céleste.One day, in December 1995, his world came crashing down around him, as a stroke left him quite literally a prisoner in his own body. In this book, he shares his memoirs of his life both before and after his accident.
Well, I've already told you a fair amount about the author. Jean-Dominique Bauby's memoirs are relayed to us in the present tense, which gives us a real insight into his condition, his thoughts and feelings.
As an established and respected journalist, one would expect the author to know how to string a decent sentence together. However, given the extraordinary circumstances in which this book was written, it's amazing it was even written at all.
Bauby's condition, which is known as Locked-In Syndrome, is an extremely rare one, which leaves its victim completely paralysed. In fact, Bauby has a very small amount of movement in his neck and his left eyelid. Herein lies the key to his only communication with the world around him. By blinking when a person reciting the alphabet got to the right letter, Bauby was able to dictate the memoirs, letter by letter. The system, which was introduced to Bauby by his speech therapist Sandrine, is made more efficient thanks to the alphabet being rearranged according to its frequency in the French language.
I love this book. At the risk of sounding a bit cheesy, I feel privileged to have read it - privileged that I can read it. It really brings home just how quickly someone's circumstances can change and how it affects not only them but the people around them. It's also amazing that someone in such a situation is physically able to write such a book, and can mentally find the strength to do so.
...on the translation
Jean-Dominique Bauby was French and as such this book was originally written in French. It has since been translated into numerous languages. The English version was translated by Jeremy Leggatt. I've never knowingly come across his work before, but I think he does an excellent job here.
I originally read this book in French, but it was well over a year after reading this that I was able to get my hands on the English version, so I was able to appreciate the translation in its own right. I have since reread the English while refering to the French copy in order to see how certain aspects have been translated (just because I'm someone who is interested in translation) and can say with some confidence that I feel this is a very successful translation. It reads extremely well and is beautifully written, as is the original. The translator has kept the French essence, keeping many of the cultural references in, only translating those which would really jar with an English readership, and doing so in a very sensitive manner.
I feel pleased to have read this in French and my own native language. My French isn't fluent, so reading the original version was a challenging and very rewarding experience. Reading the English translation was obviously not a challenging experience, but it was nonetheless a highly rewarding one.
I somehow feel that some of the original sparkle is gone and that Bauby's own words generally pack a greater punch, but this is always to be expected of a translation and parts of Leggatt's translation really blew me away.
...on the writing style
The entire book is dictated by Bauby in the first person. In total there are 29 chapters, including a prologue, but each chapter spans no more than a few pages. The short and snappy style shows the highs and lows of his condition, how one day he can 'derive a guilty pleasure from this total lapse into infancy,' and the next day, find his situation 'unbearably sad'. He manages to convey his emotions beautifully, and with him we feel a sense of hope in one chapter, to helplessness in the next, as he comes to terms with the tragedy of his situation. His wit and nostalgia will, at times, bring a smile to your face.
Chronologically, too, he takes us on a journey, whereby we see how he day-to-day life plods along now, at the pace of a deep-sea diver, while we flutter from memory to memory of his life before the accident, much like a butterfly.
And his memory is truly astounding - not just the memory required to even write these memoirs, but also his ability to recount and retell events from his childhood and early adulthood, such as a trip to Lourdes, right up to the day of his accident in extreme detail. He conveys his incredibly vivid imagination extremely colourfully to the point where his descriptions of the gourmet meals he treated himself to in his mind made my mouth water!
....on suitability and readership
I wouldn't say that this book has one particular group of society in mind as its readership - I think men and women of all ages and backgrounds could enjoy this book. Cultural influences on Bauby came through a lot - such as his apparent love of gastronomy and fine dining, as well as references to French writers, singers, and other icons. This may be off-putting to some, but I found it never interferred with my enjoyment of the book. I even learnt a few things through it - prior to reading this book I had no idea about any of the characters in The Count of Monte Cristo but Bauby's reference to Alexandre Dumas' novel taught me a thing or two. I haven't heard of many of the authors piled up on his windowsill, waiting to be read to him, nor have I seen many of the places he has seen, but I never feel overwhelmed by any of these references.
It quickly became apparent that I am not as well read or as well travelled as Bauby, but this simply enhanced my enjoyment of the book, as I began to see how things such as "a good old proletarian hard sausage'' or a character from a Dumas novel could affect Bauby's perceptions of his condition. Although it's hard to identify with these references personally, they still give great insight into Bauby himself and that's what is so interesting to read, and they do make you think about similar references in your own life - memories from your own childhood and your own perceptions of things.
For those perhaps more au fait with some of these references, say for those who have read The Count of Monte Cristo for example, I think these references are perhaps easier to identify with and strike a different, perhaps more personal chord, but are no less effective in giving you an insight into Bauby as a person.
I think on an age level, you probably need to be at least 16+ to enjoy this book fully. I might be slightly off in that assessment, but I certainly feel that the book might be a hard-going in parts, due to the cultural references just mentioned for someone younger than 16. Perhaps even then, it's not something that would interest a teenager.
As a word of caution I should mention that the odd swear word is used within the book - however, it's nothing too offensive for an adult reader.
Price, Availability and Facts and Figures
Title: The Diving Bell and the Butterfly
Author: Jean-Dominique Bauby (Translation by Jeremy Leggatt)
Pages: 144 (or approx. 200,000 blinks)
Publisher: Harper Perennial (2008)
- This edition is currently reduced to £4.24 on amazon.co.uk but can be bought for as little as £1.04
- It's also available from bookstores such as Waterstones and WH Smith, retailing at just under the RRP in the sales.
- The French version is also available on amazon.co.uk for £15.75 (Euro15.20 on the French site, so not much cheaper there)
Hardback and audio editions are also available.
In this edition there is a short section at the back of the book with several short features about the author, the book, and how it became a film. There's also a short section on other titles you may enjoy. While this is worth mentioning, I doubt many would base their purchasing decision on whether this section were there, still, it's a nice extra few pages to read.
I did mention that I had seen the film - I know the general rule of thumb is that the book is always better than the film, but in this case it's even more so the case. The book painted a most vivid picture in my mind which has stayed with me since my first reading and has been added to with every subsequent reading, while the film remains a washy, vague memory, and though I enjoyed it, it doesn't come anywhere near the book.
I think critics would agree - the film has been very successful - it was nominated for four Academy Awards and has won awards at the Cannes Film Festival, Golden Globes and the BAFTAs, but it was criticised by some for its inaccurate portrayal of his life.
The book, meanwhile, sold 150,000 books in its first week and went on to become a number one bestseller across Europe. It has received an overwhelmingly positive reception by, critics - I think the following two quotes sum it up perfectly:
'A staggering piece of work. It represents an almost inconceivable act of generosity, the gift of the mind and the spirit for which writing was designed' A. L. Kennedy
'We listen, because what he has to say goes to the core of what it means to be human' Robert McCrum, Observer
I really couldn't recommend a book more. It might not take you long to read, but when you think how much went into writing this book - the drafting, redrafting and editing, which Bauby did all in his head, and the dictation, done letter by letter by Claude Mendibil over a 10-month period (four hours a day, with an average word taking two minutes to dictate) - you find yourself savouring every word, appreciating it in a way that you might not with other writers, whose words are glossed over in favour of the meaning behind them. I found some paragraphs so powerful that I even reread them.
Reading about Bauby's plight from his perspective did make me realise how I take many things for granted, without me ever feeling as though Bauby was preaching or feeling sorry for himself. Of course, there are inevitably days where he does feel anger, despair and all manner of emotions for the situation he finds himself in, but his honesty shows us not only how he comes to terms with his diagnosis and his new way of life, but also how it has changed him as a person. It is a short read, but it is by no means an easy one - it does deal with a very real, yet rare and cruel affliction and that is a difficult thing to read about, but it is worth it - so many aspects of the book are positive ones, and the fact that Bauby was even able to write it is nothing short of inspirational.
If you can read this in French, I would recommend doing so, but I have to stress that the translation really is beautifully written and definitely does Bauby's work justice. Either way, as American author and literary critic Edmund White so aptly says, 'Read this book and fall back in love with life'
Le scaphandre et le papillon
Price in 2009:
I think the price on this book varies asto where you buy it. i got mine on offer for just £2 in HMV, so shop around the internet may be able to produce cheap versions also.
Jean Dominique Bauby writes his memoirs of survival after a stroke at the age of 43 paralyses the entireity of his body accept for the use of his left eye. His memoirs are about the fears he has to facewhilst in his 'locked in' condition. He remniceses about the days he's lost; the regrets and triumphs he's experienced.
Bauby reflects upon his job as a fater, how it unfinished. He thinks about his own father a lot and how children ultimatly paren their parents in the end and feels sad that this has come to soon for his own children.
The diving Bell: This is how Bauby feels about his condition- he cannot get out of his diving bell, he is locked in but is aware of what is going on around him.
The Butterfly: All other senses are heightened when some are lost. Also life is as fragile as the wings of a butterfly.
Jean Dominiqe Bauby was the editor in cheif for the French version of the magazine Elle.
Ten days after the book was publish Bauby passed away.
Does the cosmos contain keys for opening up my diving bell? A subway line with no terminus? A currency strong enough to buy my freedom back? We must keep looking.
How long this book took me to read:
About an hour, its quite short but poignant and is eaily read in one sitting.
Id highly reccomend this book as it is very life affirming and important to understand how he felt whilst in a living coma of sorts.
What is your worst fear? Mine is to suffer some kind of illness or disability that makes me unable to live an independent life and be trapped within a useless body. I suffer from bouts of sleep paralysis during times of stress, put simply my mind wakes up and my body does not. When that first happened it was terrifying, I would fight with all my strength to try and open my eyes or move my legs but my body would not respond, the whole time being aware of what is going on around me. It is less scary now I am simply able to tell myself it is sleep paralysis and go back to sleep again. When I wake up in the morning I am always relieved to be able to get up and face the day but the fear is there that one day I will permanently end up in a similar state.
Jean-Dominique Bauby suffered a stroke on the 8th of December 1995 while out driving with his young son. The result for him was a catastrophic brain injury which led to him suffering from locked in syndrome which is a condition where the body loses all of its movement but the mind remains intact. This was a cruel blow to a man in his prime, the editor of the French edition of Elle magazine and father of two young children who lived a charmed life.
Bauby's new home is room 119 of the Berck-sur-Mer Hospital on the French Channel Coast, a rehabilitation centre. His prognosis is poor, patients nerves can regenerate at the same speed that a hair grows meaning that in several years time he may be able to wiggle his toes again but initially his only movements are blinking his left eye (his right having been sewn shut) and swiveling his head from side to side. Every function needed to keep him alive is performed by a machine or carer as he breathes via a tracheotomy tube, is catheterised and fed a liquid diet directly into his stomach.
I can imagine falling into deep despair if this was my lot but Bauby shows remarkable strength and courage in building a new life for himself in these terrible circumstances. He describes in vivid detail the care he is provided, the carers who attend to his limp body and the other patients in the hospital who refuse to make eye contact with him in the physiotherapy room. Of course such a life is frustrating, not being able to swallow the saliva that pools in your mouth or not being able to read are just two of the frustrations he faces. It is also a deeply painful time for him, his friends and family visit and phone regularly but not being able to hug his children causes him the most pain.
Instead of descending into self pity Bauby writes letters to his loved ones, starts an association for people suffering from locked in condition so they can communicate with one another and writes the book I am reviewing. The title "The Diving Bell and The Butterfly" refers to his weighed down body and the fact that he can still hear the butterflies wings flapping in his mind. Writing it must have been an extremely long process, his only means of communication being a letter board with the letters placed in the order of frequency they are used in the French language. His editor would read out the letters one at a time and Bauby would blink when she read out the correct one and slowly the book took shape.
The book is beautifully written and is almost poetic at times. The book was originally written in French but the translation is wonderful with none of the clumsiness you can sometimes see with translations. It is a truly remarkable account of one mans life and his character and spirit really shine through on the pages. One of the hardest aspects of his disability was that he became invisible to many around him, his physical presence meant many would look straight through him but this book shows a mind that is as active as it always was with a rich imagination and dreams that carry him through his ordeal. Sadly Bauby died just two days after the book was published so could not see for himself what an impact his book had but it must be a comfort for his children to have a record of their fathers last months of life.
The book is short, just 136 pages long but is an extremely engrossing read. The version of the book I read is the Harper Perennial version which also contains obituaries written by his friends and more about the film based on the book. I really enjoyed the extras in this version as it let me know a bit more about the man he was before he became ill and made the story even more moving.
The Diving Bell and The Butterfly by Jean-Dominique Bauby (ISBN 0007139845) is available from Amazon.co.uk for £3.49.
In December 1995, French journalist and editor-in-chief of Elle magazine Jean-Dominique Bauby seemed to have it all. He was a happy and healthy father of two with a successful career and many friends, a man known for his wit, style and love of life. However, on an outing with his young son not long before Christmas, he was suddenly taken ill and needed to be rushed into hospital with breathing difficulties, where he soon lost consciousness. After 20 days in a coma, Bauby awoke to find that he had suffered a catastrophic stroke in his brain stem, which had left his mind fully functioning but trapped in a body he could no longer control, depriving him of movement and speech. This rare condition, appropriately known as "locked-in syndrome", left him with conscious control over his left eye, but unable to move any other muscles in his body; he couldn't even swallow or breathe without medical assistance. The stroke had also left him with impaired hearing, painfully amplifying and distorting many of the sounds around him, and the ability to still feel pain in the body that confined him (''my hands, lying curled on the yellow sheets, are hurting, although I can't tell if they are burning hot or ice cold''). Bauby was forced to concede that his former high-living Paris life was over, now as unreachable as the objects on the other side of his room in the hospital complex at Berck-sur-mer. He was just 44.
With some effort, Bauby managed to communicate with those around him that his mind had not been impaired by the stroke by blinking his left eye. He had soon established a communication system with his visitors and hospital staff, whereby they recited the alphabet - this soon developed into a French language frequency ordered alphabet, for efficiency - and Bauby blinked to select each letter of the word he wanted. This system, however, worked better with some people than others. ''It is a simple enough system,'' he explains. ''You read off the alphabet . . . until, with a blink of my eye, I stop you at the letter to be noted. The manoeuvre is repeated for the letters that follow, so that fairly soon you have a whole word. Fairly soon! Less soon when the amanuensis anticipates and makes mistakes. One day when, attempting to ask for my glasses (lunettes), I was asked what I wanted to do with the moon (lune).'' While this system may seem a remarkable way for someone to communicate their basic needs - to ask that the TV be turned down or the curtains drawn, for instance - what is almost miraculous is that Bauby used it to dictate his book, "The Diving Bell and the Butterfly" (referring to the author's body, which traps him like a diving bell, and his mind, which is as free as a butterfly). The book took about 200,000 blinks to write, and each word about two minutes to dictate; he had to compose and edit the book entirely in his head, rehearsing whole sections so he could dictate it word perfectly to his assistant Claude Mendibil when she arrived to transcribe it over the summer of 1996.
I first heard of "The Diving Bell and the Butterfly" in an article in the "Readers' Digest" shortly after the book first came out. This intrigued me at the time, but it was not until I saw another article about the book quite recently that I was reminded of it and felt motivated enough to pick up a copy from the library. The book is only small (132 pages) and I read it easily over the course of a weekend, yet it is a strongly written and powerful work for all its brevity. The book is arranged in a series of short chapters, each covering a different theme or idea, as Bauby describes what life is like for someone with locked-in syndrome, his everyday experiences, his thoughts and ideas, and experiences from before he suffered his stroke. While he admits that his ''communication system disqualifies repartee,'' it did allow him to elegantly describe a range of physical and emotional experiences for his readers, some witty, others nostalgic, and a few capturing the tragedy of his situation. There are scenes in Bauby's narrative - his discovery, on seeing himself reflected in a windowpane, that he is not just ''reduced to the existence of a jellyfish'' but is ''also horrible to behold'' - that you might be inclined to describe as unbearably sad, if ''unbearable,'' thanks to this book, were not a word you will never again use quite so loosely. On a lighter note, we experience why Bauby describes his mind as a butterfly, as he indulges his imagination to cope with his situation and occupy the long empty hours when he is without visitor, physiotherapist, nurse or doctor at his bedside. He dreams of lying with the woman he loves, of spending time with his children, of cooking and enjoying his favourite meals especially, now that he can no longer eat solids and is fed through a tube.
Throughout the period when he was dictating the book, Bauby's prognosis was uncertain. The author mentions what he has been told by his doctors: that while full recovery from locked-in syndrome was virtually impossible, there was a chance that in the long term he might recover sufficient use of his muscles to allow him to breathe without the aid of machines, and possibly even to speak and eat again. By the time he comes to the end of his dictation, he has managed to regain a small amount of movement in his head and describes his joy at being able to now see a greater amount of his room than he could when he first awoke there. While "The Diving Bell and the Butterfly" ends on what seems like a hopeful note for the future, we the readers know that Bauby suffered sudden heart failure just a few days after his novel - which sold 150,000 copies in its first week and became a number 1 bestseller across Europe - was released in France in March 1997. This short but startling book is well worth reading, but is best approached mindful of the fact that we are very lucky to be reading it in between many blinks of our own eyes. It is an astonishing, humbling, at times uncomfortable read, but one that is rightly regarded as something of a modern classic.
Original Title: Le scaphandre et le papillon
Translation: Jeremy Leggatt
Price: £3.49, paperback, new, on Amazon.co.uk
Jean Dominique-Bauby, the editor-in-chief of the French magazine Elle, was just 43 on the 8th of December 1995 when his life changed completely.
Following a stoke, leaving him with damage to his brain stem, Bauby was left with a condition known as 'locked in syndrome'. Locked-in-syndrome is a thankfully incredibly rare condition which leaves the sufferer unable to move any part of his or her body, excepting the eyelids and unable to speak, whilst retaining all mental capacity. This is the world in which Bauby awoke after a 20-day coma following his stroke. It is a horrifying thought.
Jean Dominique-Bauby wrote The Diving-bell and the Butterfly after about 18 months into his life as a sufferer of locked-in-syndrome. He dictated the book to his nurse using just one eyelid. This nurse, to whom the book is dedicated, devised a system in which the French alphabet was re-arranged according to use. The nurse read this aloud and Bauby would blink when the letter he required was read aloud.
And so, using this system Bauby slowly dictated the Diving-bell and the Butterfly, a short book of around 40-50 pages but still an amazing achievement. In the book Bauby talks about life. He talks about the life he used to have and the life he has now. He talks about the things that matter, the things we all take for granted, the things that were so dramatically and drastically removed from him.
Although the book is a sad one, a very sad one and it is sentimental, Bauby does not encourage pity and at the end of the day he meant this book as a celebration of life, a means to reach out to other people and to touch them. It worked for me, this lovely book is one that everyone should give up just a small amount of their time for. You never know what could be around the corner .
The Diving-Bell and the Butterfly was published in France on the 9th March 1997 and it has achieved world-wide aclaim. Jean-Dominique Bauby died just three days later ..
The book can be bought from all good book sellers and online with a recommended retail value of £4.99.
For more information on locked-in-syndrome please see:
This is an awe inspiring, uplifting and devastating little book. It is only 140 pages long, and if you rad fairly quickly, (as I do), it can be completed in a single, albeit lengthy, session of reading, ( as I did). The reason why you may not be able to put the book down is the sheer power and tragedy of the situation explored by the author. The book was written by Jean-Dominique Bauby, a frenchman working in journalism. I an almost hear the thoughts being voiced that - "really can't have been much to write a short little book if the writer is a journalist, it's what they do, isn't it?" However, this book was not written in the normal manner, as the author wrote it with his eyelid! Yes, he actually dictated the book by using a blink to indicate when someone sitting by him reading out aloud the letters of the alphabet was to stop.The person then wrote down that single letter, and then the process of reading the alphabet began again. You cannot help but imagine the enormity of this task as you read each word on the page, and it forces you to become aware of the sheer willpower that drove this man to write each word, each phrase, each sentence. You are forced to reflect on the tedium, on the diligence and love of his friends and family to enable this process to occur, and upon the sheer logistical difficulties involved. Jean- Dominique Bauby experienced a stroke when in his thirties, this left him in the terrble position of suffering from the effects of the stroke, paralysis, deafness, weakness but, worse yet, the stroke caused him to experience 'Locked-In Syndrome' i which he had an inner, full mental life, but was basically unable to communicate effectively with the world outside. A lving hell, you may imagine. This book is an account of his experiences whilst living the prison of his body. Despite the dreadful situation in which the author finds himself, this is not a book about the woes of his lot, it is a bo
ok that explores the joy of life. Yes, there is pain and suffering, but that is more implied than explicit. Yes there is depression and despair, but that is told with an unfliching wry humour and beautifully economical turn of phrases. I intend to read this book several times, throughout the remainder of my days. If I am feeling down, or railing against lifes little unfairnesses, I hope to reflect on Jean-Dominique, and the wonderful legacy he has left us with his gift of this book. That is, the legacy of hope. A fantastic book, buy, beg, borrow or steal it, you will not regret it.
On first picking up 'The Diving-Bell and the Butterfly'it will strike you that it is a very small book, a slim volume of only 139 pages, but on reading this story and with the realisation of how it was written, it transforms before your eyes in to a giant piece of work, a story so mamoth in its telling that I defy anyone not to be impressed. When I reached page 139, I did something that I have never done before. I took a deep breath and turned to the first page of the story and started again. Jean-Dominique Bauby, was editor-in-chief of French Elle, the father of two young children, he had a successful career and a life many of us would envy. After suffering a massive stroke, Bauby found himself completely paralysed, speachless and able to move only one eyelid. He was the victim of what has become known as locked-in syndrome, a condision that follows a massive stroke and leaves the sufferer completely unable to move or communicate, but mentally undamaged, a perfect mind in a useless body. Bauby however could move one eyelid and it was with his eyelid that he 'dictated' his story. This is a unique glimps into a world that is fortunately rare. A story that if nothing else will make you proud to be a human being, and possibly a little more grateful for what you have.
The diary of Jean-Dominique Bauby who, with his left eyelid (the only functioning muscle after a massive stroke) dictated a remarkable account of being locked inside his own body.