The Diving-Bell and the Butterfly

by Jean-Dominique Bauby, Jeremy Leggatt (Translator)

‘Locked-in syndrome: paralysed from head to toe, the patient, his mind intact, is imprisoned inside his own body, unable to speak or move. In my case, blinking my left eyelid is my only means of communication.’

In December 1995, Jean-Dominique Bauby, editor-in-chief of French ‘Elle’ and the father of two young children, suffered a massive stroke and found himself paralysed and speechless, but entirely conscious, trapped by what doctors call ‘locked-in syndrome’. Using his only functioning muscle – his left eyelid – he began dictating this remarkable story, painstakingly spelling it out letter by letter.

His book offers a haunting, harrowing look inside the cruel prison of locked-in syndrome, but it is also a triumph of the human spirit. The acclaimed 2007 film adaptation, directed by Julian Schnabel, won Best Director at Cannes and was nominated for the Palme d’Or.

Genres: Nonfiction, Memoir, Biography, Book Club, Biography Memoir, Autobiography, France

149 pages, ebook

First published January 1, 1997

About the author

Jean-Dominique Bauby was a well-known French journalist and author and editor of the French fashion magazine, Elle.

On December 8, 1995 at the age of 43, Bauby suffered a massive stroke. When he woke up twenty days later, he found he was entirely speechless; he could only blink his left eyelid. This rare condition is called locked-in syndrome, a condition wherein the mental faculties are intact but the entire body is paralyzed. Bauby also lost 60 pounds in the first 20 weeks after his stroke.

Despite his condition, he wrote the book The Diving Bell and the Butterfly by blinking when the correct letter was reached by a person slowly reciting the alphabet over and over again. Bauby had to compose and edit the book entirely in his head, and convey it one letter at a time. To make dictation more efficient, Bauby had his interlocutor read from a special alphabet which consisted of the letters ordered in accordance with their frequency in the French language. The book was published in France in 1997. Bauby died just ten days later of pneumonia. He is buried in a family grave at the Père-Lachaise cemetery in Paris, France.

Reviews

[Petra X · Rating 5 out of 5]

Words flow like the images and emotions of poetry. One thought leads to another. The rambling mind touches like a butterfly, just long enough to draw the essence from a story, and then moves fluidly to another. Jean-Dominique Bauby's body was an immobile weighty shell; the diving bell his perfect simile. Yet in his head he roved the world and composed the words that would let us in. Intent on looking for the cure to let him move again, he moves forward in his final words "We must keep looking. I'll be off now", and six months later he was dead.

[C · Rating 2 out of 5]

I know I will likely get flayed alive for rating this one so low, but I just can't see the worship behind it...

First, let me say that the "writing" of the book by someone in such a state is an amazing accomplishment and I dare not take that away from him. (For those that don't know, it was dictated by Jean-Dominique Bauby - former editor of the french Elle - who had a severe seizure and after damage to his brain stem, was diagnosed with locked in syndrome. The entire book was dictated, letter by letter, by the blinking of his left eye.)

That said, you would think a memoir like this would at least try to present you with a likeable character who has something to say about life. Now, there were a couple of wistful, almost beautiful passages. But for the most part, I felt a sort of smugness in his attitude (especially towards women) that just pulled me out of any feelings the book tried to well up in me.

Maybe I am a terrible person, but I just couldn't see why anyone would be so impressed by this book. Any time he would start to reel me in, one of his thoughts would throw me right out to sea again.

[Shimaa Mokhtar · Rating 3 out of 5]

إذا كنت من محبي قراءة الكتب الواقعية التي تعرض تجارب انسانية صعبة وملهمة، كأعمال هيلين كيلر أو كريستي براون- والتي عانى اصحابها كثيراً في سبيل كتابتها، فالعمل الحالي مثالي للقراءة
هي ليست رواية بالمعنى المفهوم، بل هي أقرب لشذرات وخواطر خطها الكاتب بعد اصابته ب"متلازمة المنحبس" أثر جلطة قلبية، وهي حالة تترك المريض في حالة وعي تام، مشلولاً من كل عضلات جسمه ما عدا عضلات عينيه
في الصفحات الأولى للعمل يصف الكاتب جسده وكأنه يرتدي بذلة غوص لا تمنحه الحرية، في تناقض صريح لروحه المنطلقة كفراشة تتأمل الكون حولها بمفهوم جديد ومختلف، وباستخدام رمشات عينه اليسرى يبدأ بكتابة فصول الكتاب، تساعده ممرضة تقرأ الحروف كلها فإذا وقفت على الحرف المطلوب رمش بعينه فتسارع بتسجيل الحرف لتتكون الكلمات ثم الجمل تباعاً .. مجهود جبار تطلب الكثير من الوقت وعشرات الآلاف من رمشات العين ليخرج الكتاب للنور قبل وفاة مؤلفه بعدة أيام
الكتاب يضم فصول متفرقة يجمعها رابط انساني ووعي عميق بقيمة الأشياء مهما كانت بساطتها وتدل على ثقافة كبيرة لكاتبها، بعض الفصول مميزة مثل عشرين ضد واحد، وبعضها عادية أو أقل. الترجمة سيئة من وجهة نظري، ولجأ المترجم لكلمات غير شائعة تحتاج لترجمة بحد ذاتها ككلمة "ميدعة"، لكنه بذل مجهود جيد في الحواشي لشرح معنى كل مصطلح قد يبدو غامضاً للقارئ
كتاب جيد يمثل تجربة انسانية فريدة، ربما ليس بالعمق الذي تخيلته، لكنه لا يخلو من بعض الشذرات الفريدة والمميزة

[هدى يحيى]

ربما تكون الحكاية عادية
رجل يصيبه شلل تام
لم يعد شيء يتحرك فيه سوى عينه اليسرى
الألوف يصابون بالشلل بمختلف أنواعه..
أليس كذلك..؟

هي حكاية رجل
مسجون داخل بذلة غوص هي جسده الذي يخنقه
يقيد روحه تارة .. ثم تتمرد الروح تارة أخرى لتحلق كفراشة

رجل حقيقي أيضا
فالكتاب سيرة ذاتية
سيرة أمليت بعين واحدة فقط

سيرة توفي صاحبها بعد إملائها ببضعة أيام

ليس ما أقوله شططا
فقد كان يمليها على محررته بأن تقرأ عليه الحروف حرفا حرفا
ويرمش هو عند كل حرف يريده
لتتشكل الكلمات ثم السطور

نعم .. هكذا كتب هذا الكتاب

لا تتوقع أن تجد بالكتاب شيئا مذهلا
إنها شذرات أفكار لرجل حبيس جسده
نفس متألمة تحاول الخروج من قفصها بطريقتها الخاصة

لا تتوقع أنه تجد ما به مذهلا
لأنه كتب في الواقع بطريقة مذهلة
وهذا في نظري يكفي ليكون مذهلا

[فايز غازي Fayez Ghazi · Rating 3 out of 5]

- هناك مقولة متداولة في معظم مجتمعاتنا "ما حدا مات ورجع خبّر"(بالفصحى: ما مات أحد وعاد لإخبارنا بما وجده).. لكن في هذه الرواية فالموت جسدي مع تواجد الروح بداخله، والكاتب بعد هذا "الموت"عاد وأخبرنا برمش عينه الأيسر عما كان وعما تغير وعن الذي يحدث معه في "بذلة غوصه" في جسده المشلول الميت بالقوة والفعل.

- النصوص مؤلمة، بعضها عادي، بعضها يظهر الجانب الثقافي المميز للكاتب.. لكن هذا الكتاب لا يمكن الحكم عليه كغيره لأنه تجربة حياتية فريدة من نوعها رغم الوضع المأساوي!..

[Fabian · Rating 3 out of 5]

Prognosis: Man may be inspired & find beauty even at his own death bed.

But there is a question even Bauby asks himself: Does all of this a novel make?

No. (Not even a decent... anecdote?)

It is, however, testament of the prognosis which questions the central Meaning of Life question. Bauby finds personal beauty, even if he cannot do anything with it but blink it in code to his nurse since he is absolutely paralyzed.

But this is no Anne Frank, however. This is no beauty pertaining to a person trapped. I feel some (but not complete) pity for Mr. Bauby. The tale this man tells is one of robbed mobility, but not of robbed dignity... or money. It bothered me a little that the editor of French Elle magazine, rich and powerful as he was, still alludes to and rubs in our faces his superiority, his nouveau riche lifestyle (cars, trips, experiences...). Even though it did not answer the central What is Life About? question, it did made me ponder something perhaps even more interesting: Can a healthy individual truly envy a "vegetable?" R.I.P.

[Sawsan · Rating 3 out of 5]

التواصل الانساني غاية في البساطة والجمال..... والصعوبة في بعض أحيان
يوميات الصحفي جون دومينيك يمتزج فيها الحزن والسخرية والحنين
كتبها بعد إصابته بمتلازمة المنحبس, وكأنه يُحرر أفكاره وذكرياته من سجن الجسد
لكن الأجمل هي رغبته في التواصل والإحساس بالحياة برغم حالته المرضية

[Gregory Baird · Rating 5 out of 5]

“Does it take the harsh light of disaster to show a person’s true nature?”

The situation is unimaginable: waking from a coma to find yourself trapped in your own body, able to think clearly and understand what is going on around you, but unable to partake in any of what transpires. It’s called “locked in syndrome,” and Jean-Dominique Bauby finds himself a victim of it when he awakes from a coma following a serious stroke that damaged his brain stem and left him almost totally paralyzed; he has only limited facial movements, slight control over his neck, and use of only one eye. It is with this single good eye that Bauby is able to communicate with the world, using an excruciatingly slow code of blinking that requires time, energy, and a great deal of attention and patience. And it is also thanks to this one eye that we have this first-hand account, dictated by Bauby from his hospital bed, recounting the details of his life in the wake of tragedy.

Far from being restricted by his condition, Bauby unleashes the full force of his literary capabilities (which were quite estimable, considering that he was the editor of French Elle), leaving us with a wry, touching, and deeply affecting memoir that shines with descriptive flourishes and deep insights. His perspective in the wake of tragedy is awe-inspiring and leaves the reader with a deep respect for his fortitude; truly, this is a man I would have loved to have had an opportunity to have a conversation with, just to try and absorb a small degree of his wisdom and experience. “The Diving Bell and the Butterfly” has moments of regret, frustration, sadness and aching loneliness, but curiously absent are anger and self-righteousness. Bauby never curses his misfortune but focuses on getting by with the hand he was dealt. To read his memoir is to get to know a truly extraordinary man whose spirit refused to be crushed and whose mind and imagination allowed him to survive in the most constrained of circumstances. To say that “The Diving Bell and the Butterfly” is about the triumph of the human spirit is a sorry understatement, and does little to pay tribute to an amazing man.

“The Diving Bell and the Butterfly” is a slight volume, to be sure, but it feels wrong to criticize it for that when one considers the conditions under which it was composed. And considering that Bauby packs a hefty punch in such a short page count, it is well worth the experience.

Grade: A-

[Will Byrnes · Rating 5 out of 5]

Jean-Dominique Baube, the forty-something editor of Elle magazine in Paris, husband, father, was stricken by a rare brain disease. After several weeks in a coma he awoke to find that he was a prisoner inside his own body, with control over only his left eye, and motion limited to twisting his head left and right, somewhat. Yet this man managed, with help, to not only maintain his sanity and his optimism, but his appreciation of beauty and his sense of humor. This is a case in which imagination is a critical tool to one’s very survival. The guy wrote a book using little more than his left eye blinking code to an interpreter. This is not at all a depressing memoir. It is inspiring. In fact it is one of the most positive, uplifting things I have ever read.

[Muhammad · Rating 5 out of 5]

‘ডাইভিং বেল’ হলো ডুবুরীদের সমুদ্রের গভীরে পাঠাবার বিশেষ এক ব্যবস্থা। বাতাসকে কাজে লাগিয়ে অত্যন্ত সরল এই যন্ত্রটির ব্যবহার শুরু সম্ভবত অ্যারিস্টটল এর সময়কাল থেকে। ছোটবেলায় গোসল করতে গেলে প্রায়ই একটা খেলা খেলতাম। মগের ভেতর শুকনো গামছা দলা পাকিয়ে ভরে মগটিকে উপুড় করে বালতির পানিতে চাপ দিয়ে দিয়ে ভেতরে ঠেলতাম। মগের পুরোটাই পানির তলায় চলে গেলেও ভেতরের গামছায় পানির স্পর্শও লাগতোনা, কারণ মগের ভেতরের বাতাস পানিকে ভেতরে ঢুকতে দেয়না। এই একই কার্যপ্রনালী ব্যবহার করেই ডাইভিং বেল তৈরী করা। ঘন্টা আকৃতির নিচের দিকে খোলা এই যন্ত্রতে করে ডুবুরীদের নামিয়ে দেয়া হতো গভীর পানিতে। গন্তব্যে পৌঁছাবার আগ পর্যন্ত ডুবুরীকে ডাইভিং বেল এর ভেতরে বসে বা দাঁড়িয়ে থাকতে হতো (ছবি দ্রষ্টব্য):



ছোট্ট একটু সময়ের জন্য এক-দুজন মাত্র ডুবুরী বয়ে নিতে হতো বলে আগেকার যুগের ডাইভিং বেলগুলোর আয়তন খুব বেশী হতোনা, তাই ভেতরের সঞ্চিত বাতাসের পরিমাণও খুব সামান্যই হতো। জানালাবিহীন, অন্ধকার, বদ্ধ খুব ছোট একটি খোলস, যেখানে প্রতি নিঃশ্বাসের সাথে সাথে অক্সিজেন কমে আসছে, সেখানে অল্প কিছুক্ষণ সময় কাটানোটাই কত কষ্টকর হতে পারে মনে মনে তার মোটামুটি একটি ধারণা আমরা বোধহয় করতে পারি। নিতান্ত পেশা বলেই ডুবুরীদের এই যন্ত্রের ভেতর বসে থাকতে হতো, তা-না হলে কে আর যেতে চাইবে দম বন্ধ করা অন্ধকার এই কুঠুরির ভেতর?

‘দি ডাইভিং বেল অ্যান্ড দি বাটারফ্লাই’ হলো এমনই এক অন্ধ কুঠুরির ভেতর আটকে পড়া একজন মানুষের স্মৃতিকথা। তবে, এ ক্ষেত্রে, ডাইভিং বেল শুধুই একটি রূপক। স্মৃতিকথার লেখক জাঁ দমিনিক বোবি আটকা পড়েছিলেন তাঁর নিজের শরীরের ভেতর, দারুণ দুরারোগ্য এক রোগে আক্রান্ত হয়ে। ১৯৯৫ সালের ৮ ডিসেম্বর ফরাসী ফ্যাশন ম্যাগাজিন ‘এলে’র সম্পাদক বোবি হঠাৎ এক ম্যাসিভ স্ট্রোকে আক্রান্ত হন। বেখ সুখ মেখ (Berck-Sur-Mer) হাসপাতালে নিয়ে যাবার পর বোবি আবিষ্কার করেন কি ভয়ানক এক অভিশাপ নেমে এসেছে তাঁর ওপর। স্ট্রোকের পর বিরল যে রোগটিতে তিনি আক্রান্ত হন তার ডাক্তারী নাম ‘লকড ইন সিনড্রোম’ (Locked In Syndrome)। এ রোগে আক্রান্ত রোগীর মস্তিষ্কের বোধবুদ্ধি নিয়ন্ত্রণকারী অংশটুকু শতভাগ সক্রিয় থাকে, অসাড় হয়ে যায় গোটা শরীর। স্ট্রোক করবার বিশ দিন পর হাসপাতালে জেগে উঠে বোবি আবিষ্কার করেন তাঁর শরীরে কোন সাড় নেই, হাত পা নাড়াবার ক্ষমতা নেই, নেই বাকশক্তিও। শুধু দুটি চোখ আর ঘাড়ের সামান্য একটু অংশ সচল। কারো প্রশ্নের কোন জবাব দেবার উপায় তাঁর নেই, নাকের ওপর বসা সামান্য মাছিটাকে তাড়াবার শক্তিও নেই, শুয়ে শুয়ে কেবল চোখ দুটো দিয়ে যতদূর দেখা যায় ততটুকু দেখা। এই সুখও খুব বেশীদিন সইলোনা। ইনফেকশন হবার ভয়ে ডাক্তার তাঁর ডান চোখ সেলাই করে দেন। বহির্বিশ্বের সাথে বোবির যোগাযোগের একমাত্র উপায় এখন তাঁর বাম চোখ। এই বাম চোখ দিয়েই বোবি তাঁর ১৩০ পৃষ্ঠার স্মৃতিকথা লিখেন হাসপাতালে শুয়ে শুয়ে!

রোমান অক্ষর ব্যবহার করা ভাষাগুলোর (যেমন ইংরেজী, ফরাসী, জার্মান, ইতালিয়ান ইত্যাদি) একটি মজার ব্যাপার আছে। ভাষাগুলোর যার যার ব্যবহারের প্রেক্ষিতে অক্ষরগুলোকে ব্যবহারের ক্রম অনুযায়ী সাজানো যায়, অর্থাৎ, সবচেয়ে বেশী ব্যবহৃত অক্ষরটি থেকে সবচেয়ে কম ব্যবহৃত অক্ষর পর্যন্ত একটি তালিকা তৈরী করা যায়। ইংরেজীতে এটিকে ‘লেটার ফ্রিকোয়েন্সি’ বলে (যাঁরা এডগার অ্যালান পো’র ‘দি গোল্ড বাগ’ পড়েছেন তাঁদের কাছে বিষয়টি পরিষ্কার, এবং এটুকু পড়ে তাঁরা হয়তো মনে মনে হাসছেন! হেমেন্দ্রকুমার রায় এই গোল্ড বাগের ছায়া অবলম্বনেই ‘যখের ধন’ লেখেন)। ফরাসী ভাষায় ব্যবহারের ক্রম অনুযায়ী অক্ষরগুলোর তালিকাটা এরকমঃ

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বাকশক্তি রহিত বোবিকে বেশীর ভাগ সময় হ্যাঁ অথবা না বাচক প্রশ্ন করতে হতো, যার জবাব তিনি চোখ টিপে দিতেন। একবার চোখ টিপলে ‘হ্যাঁ’, দুবার টিপলে ‘না’। বোবির সামনে তাঁর স্মৃতিকথার লেখিকা ক্লদ মেঁদিবিল লেটার ফ্রিকোয়েন্সির ওপরের তালিকাটা নিয়ে বসতেন এবং এক এক করে অক্ষরগুলো পড়ে যেতেন। যখনই বোবির চাহিদামাফিক শব্দটি আসত, বোবি চোখ টিপে বোঝাতেন। এভাবে এক একটি করে অক্ষর দিয়ে দিয়ে একটি শব্দ তৈরী হতো। এ কায়দায় একটি শব্দ লিখতে গড়ে দু মিনিট সময় লাগতো! বোবি প্রতিদিন গড়ে চার ঘন্টা ‘ডিকটেশন’ দিতেন। ধীরে ধীরে দশ মাসের অসামান্য পরিশ্রমের পর অবশেষে বইটি লেখা শেষ করেন বোবি। গোটা বইটি লেখার ডিকটেশন দিতে বোবিকে মোটামুটি দু লক্ষ বার চোখ টিপতে হয়েছে।

লকড-ইন সিনড্রোম নিয়ে জানবার পর প্রথম যে কথাটি আমার মনে হয়েছিলো, আমি যদি এই রোগে আক্রান্ত হই, আমি কি আর বই পড়তে পারবোনা? কক্ষনো কিছু লিখতে পারবোনা? ছবি দেখতে পারবোনা? প্রিয় মানুষগুলোকে ছুঁয়ে দেখতে পারবোনা? জাগতিক বিষয়ে তাঁদের সাথে নানা কুতর্কে জড়াতে পারবোনা? শিক্ষার একধরণের কুফল আছে, মানুষকে এটি অতিরিক্ত কৌতূহলী করে তোলে, জানতে চাইবার জন্য মনকে ছটফট করায়। আমি জানিনা অক্ষরজ্ঞানহীন কেউ এ রোগে আক্রান্ত হলে তাঁর মানসিক অবস্থা কেমন হবে; আমার কেবলি মনে হয়, তাঁর জন্য কষ্টটা হয়তো তুলনামূলক কম হবে, হতে পারে এটি আমার হঠকারী একটি চিন্তা-শিক্ষিত/অশিক্ষিত ভেদে যেই হোন, কষ্টটা তো মানুষই ভোগ করবে-তবুও মনের কোনায় অন্ধ এক বিশ্বাস বাস করে, জগতের বেশীরভাগটাই দেখা হলোনা, জানা হলোনা এই নির্মম সত্যটি যিনি জেনে গেছেন, তাঁর আফসোস আর অসহায়ত্বটাই বেশী।

শিল্প সাহিত্যের সমঝদার জাতি হিসেবে ফরাসীদের খ্যাতি দুনিয়াজোড়া। ফরাসী বোবি তাঁর বইয়ে সে প্রমাণ রেখেছেন। আকাশজোড়া অবসর সময় কাটাতে বোবি স্মরণ করেছেন তাঁর অসংখ্য প্রিয় চলচ্চিত্র আর বইকে। সমুদ্রের বালুকাবেলার দিকে তাকিয়ে জাঁ লুক গদা আর অরসন ওয়েলস-এর চলচ্চিত্রগুলোর শুটিং চালিয়েছেন মনে মনে। আফসোস করেছেন সামনেই পড়ে থাকা এমিল জোলার বইটি পড়তে না পেরে। নিজের অবস্থা বর্ণনায় ব্যবহার করেছেন অভিজাত কাব্যিকতা। যে চমৎকার সেন্স অফ হিউমারের পরিচয় এই বইয়ে দিয়েছেন বোবি, তাতে করে সংবেদনশীল পাঠকের জন্য এতো বুদ্ধিদীপ্ত একজন মানুষের এই পরিণতি মেনে নেয়াটা কিছুটা কষ্টকর-ই হবে। অনেকেই হয়তো মৃত্যুই কামনা করবেন এ অবস্থায়, বোবি তা চাননি। শারীরিক ভাবে বোবি আটকা পড়েছিলেন তাঁর পক্ষাঘাতগ্রস্ত শরীরের ডাইভিং বেলে, কিন্তু মন ছিলো তাঁর প্রজাপতির মতোই অস্থির, তা ছুটে বেড়িয়েছে বোবির ৪৩ বছরের সঞ্চিত অগণিত স্মৃতির পাতাগুলোয়। জাঁ দমিনিক বোবির স্মৃতিকথা প্রকাশের পরপর প্রচন্ড সাড়া ফেলে দেয়, তবে বোবি এ সাফল্য দেখে যেতে পারেননি। বইটি প্রকাশের দু’দিন পরই, ১৯৯৭ সালের ৯ মার্চ বোবির ইহজগতের কষ্টের শেষ হয় আকস্মিক নিউমোনিয়ায় আক্রান্ত হয়ে।

আমাদের অনেকেরই স্লিপ প্যারালাইসিস-এর ভয়ংকর অভিজ্ঞতা আছে, বাংলায় যাকে বলে ‘বোবায় ধরা’। ঘুম থেকে হঠাৎ জেগে উঠে আবিষ্কার করা শরীর অচল হয়ে আছে, জিভ নাড়াবার উপায় নেই, শুধু গলার ভেতরের এক ধরণের অসহায় গোঁ গোঁ আওয়াজ জানিয়ে দেয় ‘বেঁচে আছি’। কি নিঃসীম শূণ্যতা আর শীতল আতঙ্ক, সেই বেঁচে থাকার অনুভূতিতে! স্লিপ প্যারালাইসিস এর গড় সময়কাল মাত্র ত্রিশ সেকেন্ড। যাঁদের এ অভিজ্ঞতা আছে কেবল তাঁরাই হয়তো কিছুটা বুঝবেন বিশ দিন পর জেগে উঠে প্রথম ধাক্কাটা সামলাতে বোবির কেমন লেগেছে, কেমন লেগেছে অথর্ব ভাবে এই দেড়টা বছর বেঁচে থাকাটা।

পুনশ্চঃ লকড-ইন সিনড্রোম নিয়ে পড়াশোনা করতে গিয়ে অন্য আরেকটি ঘটনার কথা জানলাম। কিছুটা ভিন্ন প্রসঙ্গ, তবে একেবারে অপ্রাসঙ্গিক সম্ভবত নয়। ১৯৭৩ সালের ২৭ নভেম্বর রাতে ভারতীয় নার্স অরুণা শানবগ তাঁর হাসপাতালের আর্দালি দ্বারা আক্রান্ত হন। আর্দালি তাঁকে কুকুর বাঁধার শিকল দিয়ে শ্বাসরোধ করে পায়ুপথে ধর্ষণ করে। অরুণা 'ভেজিটেটিভ স্টেট' এ চলে গিয়েছিলেন, বেয়াল্লিশ বছরেও যে ঘুম ভাঙ্গেনি (ভেজিটেটিভ স্টেট এর স��থে কোমা'র পার্থক্য হলো, কোমায় রোগীর কিছু বোধশক্তি থাকে, ভেজিটেটিভ স্টেট এ রোগীর মস্তিষ্কের কার্যকলাপ আরো অনেক কমে যায়)। ২০১১ সালে অরুণা ৬৬ বছর বয়েসে মারা যান। অরুণার পক্ষে আবেদন করা হয়েছিলো তাঁকে ‘শান্তিপূর্ন মৃত্যু’র অনুমতি দেয়া হোক। আদালত তা খারিজ করে দেয়। অরুণার ধর্ষণকারীর ৭ বছরের জেল হয়েছিলো ডাকাতির অভিযোগে, ধর্ষণের বিষয়টি আদৌ আদালতে আসেনি, কারণ ১৯৭৩ সালের ভারতীয় আইনে পায়ুপথে ধর্ষণ বিষয়টি অন্তর্ভুক্ত ছিলোনা!

আমি নিশ্চিত হতে পারছিনা কোন বিষয়টি অধিকতর নিষ্ঠুর, অরুণা’র ধর্ষণ, নাকি তাঁকে ৪২ বছর ‘ভেজিটেবল’ হিসেবে বাঁচিয়ে রাখা, নাকি সাধারণের অগম্য আইনের জটিল মারপ্যাঁচ?

[Mohammad Hrabal · Rating 4 out of 5]

کتاب خود زندگی‌نامه ژان دومینیک بوبی است. فیلم بسیار خوبی از آن توسط جولیان اشنابل اقتباس شده است که دیدن آن را توصیه می‌کنم.
The diving bell and the butterfly (2007)
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حتی تیزترین شمشیر هم اگر مدتی در غلاف باشد، کند می‌شود. صفحه ۷۴ کتاب
ثبت لحظه‌ها، این بخش‌های کوچک زندگی، این احساسات شادی‌بخش کوچک، مرا عمیق‌تر از دیگران تحت تأثیر قرار می‌دهد. صفحه ۸۳ کتاب
امروز به‌ نظرم می‌آید که تمام زندگی‌ام چیزی نبوده به‌ جز یک رشته از امکاناتی تقریباً از دست‌ رفته: مسابقه‌ای که نتیجه‌اش از قبل برای ما روشن بود و ما در شرط‌بندی روی برنده‌ی آن شکست خوردیم. صفحه‌ی ۹۳ کتاب
​

[Duane Parker · Rating 4 out of 5]

**spoiler alert**

In 1995, Jean-Dominique Bauby, the editor-in-chief of French Elle magazine, suffered a massive stroke to his brain stem which left him totally paralyzed and in a condition called locked-in syndrome. He could only move his left eyelid. For my part, I would have preferred to have died instantly than to have suffered what Mr. Bauby suffered. But we don't always get to choose, and to his credit he seems to have made the best of his situation. He did write this book after all, but only by dictating it one letter at a time by blinking his left eyelid. You can find inspiration in this book, you can find beauty; it just doesn't mask the tragedy and the suffering.

[Hannah · Rating 4 out of 5]

This was a memoir of an eminently sad situation. I wanted so much to like this book more than I did, especially given how challenging it must've been to write it. Bauby dictated this book one blink at a time - literally. The only way he could communicate was to have someone scroll through the alphabet until he blinked in affirmation of the character he was trying to relay. Then they would repeat this one letter at a time until words were formed, sentences created, pages written, and a story told.

I rooted for him the entire time, but the vignettes themselves were less moving than I wanted. However, he showed remarkable courage, dignity, and an emotional maturity/strength that I'm not sure I could be capable of, had it been me locked in like that.

For the very fact that this book was published should be read by everyone, despite my mediocre rating. 3.5 stars.

[Cassy · Rating 4 out of 5]

I won’t recommend reading this book while signing up for insurance. I started a job recently and was overwhelmed by the different ways I could insure myself and loved ones against horrible tidings. [The following are actual insurance plans. I couldn’t make these up.]

Benefits Department: Do you want life insurance?

Me: Yes! Someone should profit from my death. Party at the funeral home!

Benefits Department: Do you want supplement group variable universal life insurance?

Me: I could be worth $2.5 million? Tell my parents! I am a wild success!

Benefits Department: Do you want life insurance for your spouse?

Me: I hadn’t thought of that. Yes! I will definitely miss the cash flow from my sugar daddy once the arsenic kicks in.

Benefits Department: Do you want life insurance for your child?

Me: What a sick question. Why would I care about cash if my child has just died?

Benefits Department: For the funeral expenses.

Me: Oh, okay. Yes.

Benefits Department: Do you want to enroll in the group short-term disability insurance? Group income insurance? Accidental death and dismemberment insurance? Long term care insurance? Group personal excess liability insurance? Business travel accident insurance?

Me: OMG. I have never felt so fragile. I could die or, at least, lose a limb in a thousand different ways. Did you hear about the guy who was decapitated by the elevator doors? Blood and gore splattered all over the other passengers!

Benefits Department: [Silence]

Me: Everything. Sign me up for everything. After all, I ride at least four elevators a day to work. [Imagine I am really good at mental math here.] That’s 1,040 possibilities each year to lose my mind, literally. Just from elevators!

Benefits Department: [Pause] I need you to confirm “yes” or “no” for each type of insurance.

Me: Yes. Yes. Yes. Yes. Yes. Yes.

Benefits Department: Do you want to prepare a health care proxy to instruct your loved ones how to care for you when you are too sick to speak and/or have no control over very important medical decisions about life support or pain treatment?

Me: You are the worst, insurance person. Do you derive twisted pleasure picturing me like that?

Benefits Department: [Smug silence]

Me: Yes. I would like a health care proxy.

Benefits Department: Do you want to sign up for…

By the eventual end of this conversation, the Benefits Department informed me that several hundred dollars would be deducted from every pay check to cover these nefarious insurance schemes preying simultaneously on my fear of dying, concern for my family, general risk aversion, and fondness for the mere possibility of large sums of money being transferred to my bank account. I called my husband to discuss my selections. He was aghast.

Husband: Cassy, this seems excessive. We don’t need this much coverage. We need some money left over in your pay check to buy food. Or we will indeed die early. Of hunger.

Me: But what if I die? What if you die? What if the baby dies? What if I’m paralyzed after a massive stroke in my forties. I cannot move anything except I can blink my left eyelid. While people treat me like I’m an invisible, vapid vegetable, my mind is as sharp as ever. I could write the most beautiful, poignant memoir packed into a concise 132 pages by blinking that one good eye to select letters when the alphabet is read aloud to me over and over by a very patient soul. What then, husband?

Then it hit me. This book. It should not be read while one signs up for insurance. It lingers in the back of the mind. This could happen to me. Or to you. This happened to Jean-Dominique Bauby. Read this. Not during benefits enrollment. But read this.

[Jasmine · Rating 5 out of 5]

This book involves 28 short stories, or you can say, pieces of memory from the former editor of French Elle magazine, Jean-Dominique Bauby, who was permanently paralyzed after a severe stroke. His only way of communication was by blinking his left eye and that was how he patiently spelled this book out. As he put it, and I firmly believed in him, that his main task was to "compose the first of these bedridden travel notes so that I shall be ready when my publisher's emissary arrives to take my dictation, letter by letter. In my head I churn over every sentence ten times, delete a word, add an adjective, and learn my text by heart, paragraph by paragraph."

There was no particular order for the topics in this book, nor was there any certain connection among them. What made it precious for me is how detailed Jean-Dominique depicted of what he saw, what he heard(despite his serious hearing disorder), and most important of all, what he felt. He was suddenly forced to embrace his "new life" after the misfortune, but it's rather impressive that he didn't think so sometimes.

Although I could feel the helplessness in his voice and the eagerness of freedom when he was comfined to an unfamiliar wheelchair--just like a diving bell waiting to be opened up--there were times he really enjoyed himself in spite of his disability. In a nutshell, he chose to be a carefree butterfly, making his spirit live on forever without burden and pain. What's more, this book/his words made me realize how blissful I am because I can live out loud, do whatever I want, go wherever I desire, talk and hang out with friends/family whenever we're available...etc. Therefore, he kind of reminded us to know and cherish such blessing since we never know how precious it is until we lose it.

Lastly, The Diving Bell and the Butterfly is definitely a must-read in life and I highly recommend it to everyone. The original version is in French, Le Scaphandre et le Papillon, and I found the translation one captured his meanings pretty well. By the way, I can't put an end to this review without quoting something worth valuing, so here it is:

"Capturing the moment, these small slices of life, these small gusts of happiness, move me more deeply than all the rest."

[Greta G · Rating 4 out of 5]

The Diving Bell and the Butterfly

Locked-in-syndrome: totally paralyzed, unable to speak, but completely conscious.
I find it hard to imagine a condition that's worse than this one.
People who suffer a stroke, are at a risk to suffer from this condition (luckily, mostly not this bad).
Is there still dignity in a life like this?

The writer of this memoir, suffered from this condition, and was only able to move one eye. His left eye.
Needless to say this was a powerful read. Its popularity is partly due to the fact that this book was made into a successful movie.

However, there's a similar memoir that is not as well known as this one, and which I thought was much better and more powerful : Only The Eyes Say Yes: A Love Story.
If you liked The Diving Bell and the Butterfly, I highly recommend Only the eyes say yes.

[Sara · Rating 3 out of 5]

After suffering a catastrophic cerebro-vascular stroke, Jean-Dominique Bauby wakes up with a rare condition known as ‘locked in’ syndrome. Reduced to only being able to move his left eyelid to communicate, he takes us through his days following the event and his struggle to regain his identity.

I’ve wanted to read this for a long time, but have never felt in the right frame of mind to read it. I work within neurosciences, and a lot of our patients have either had strokes or have some other form of neurological condition, and I wanted to read this in order to understand a bit more about the experiences these individuals go through and the (often harrowing) range of emotions this can encompass.

It’s a short read, as Jean-Dominique transcends simply relating his time in hospital and his attempts at recovery. This is about trying to rediscover identity in an individual who has lost all of himself. Without the ability to communicate, he breaks down recounting that he can’t ruffle his son’s hair on a whim anymore, and he lives for the scent of fried food to help him remember fond memories. At times he describes his dreams, with an almost stream of conscious approach that I found both deeply moving at times, but also jarring against the harsh reality of his current life. It’s so sad, I just can’t quite put into words how awful it must be to live an almost ‘half life’ like this, where sounds and memories are warped to the point where it’s difficult to remember what’s real and what isn’t anymore.

I rated this three stars, which means I enjoyed it, but I think the rating reflects my overall experience and feelings when I finished it. I don’t want to reread it, I appreciate and highly value what I have read, but my mood was so flat by the end. The bleakness is just made worse by the realness.

[Adriana · Rating 5 out of 5]

O carte scrisă literă cu literă, unde fiecare literă reprezintă o mișcare de pleoapă. O singură pleoapă spune povestea unui om zidit în propriul trup, al cărui suflet evadează în imaginație și în amintiri. Un suflet viu într-un trup (aproape) mort, afectat de locked-in syndrome.

Recomand această carte tuturor celor care se simt locked-in. Blocați în propriile vieți, incapabili să comunice cu cei din jur, care sunt la rândul lor prinși în capcană de propria existență, de propria rutină. Pentru că autorul ne arată cum a continuat să trăiască și să simtă în ciuda nenorocirii care l-a lovit. Ne povestește totul cu inteligență, detașare și un strop de autoironie.

De ce avem nevoie de astfel de exemple care să ne aducă aminte să trăim mai mult, mai bine, mai intens?

[Sarah ♡ (let’s interact!) · Rating 4 out of 5]

At the age of forty-three, on the 8th of December 1995, Jean-Dominique Bauby suffered a massive, catastrophic, stroke which rendered his brain stem inactive. He was in a coma for twenty days, and upon awaking, found out he was unable to speak or move his body. He was almost entirely paralysed, but could still blink his left eye. There was also some slight head movements and grunts he could make over time. This would end up being how he could communicate, and blinking at letters is (extraordinarily) how this book was written. He was suffering from a condition called ”Locked-In Syndrome, which must be one of the single worst things to happen to a previously healthy human being. He was previously the editor in chief of Elle Magazine in Paris.

On the 7th of March 1997, Le Scaphandre et le Papillon was published in France. Two days later, Jean-Dominique Bauby died of heart failure at the age of forty-four. So it is an undoubtably an extraordinary book that was written under extraordinary circumstances - so why didn’t I rate it 5 stars? The writing style is naturally a little disjointed and at times pretentious, and I don’t know if this is in part due to the person who wrote it for Bauby or whilst it was translated from French to English. But I appreciate the efforts here for this book to even exist.

4 Stars

[Yulia · Rating 5 out of 5]

I just saw the movie adaptation last Friday, the day before my father-in-law passed away: perhaps not the best time, but I'm the type of person who refuses to get myself out of my mood, but prefers to dwell on my feelings. I actually found the movie much darker than the book itself, which I read when it first came out in English. As the book's from his perspective, we are spared the experience of the silence and loneliness he is encased in. The movie, in contrast, depicts just how terrifying and isolating locked-in syndrome is, how claustrophobic and powerless the person who is afflicted becomes despite no deficit in cognitive ability, how he must have yelled inside only to appear silent and unresponsive. Truly a living hell. So it was interesting to compare the vivid, active, articulate world he presents us with in his book with the walls he faced in connecting with others who simply lacked the patience to "listen" to him and see he was still so much present.

Perhaps the most powerful contrast in the movie, which I don't remember but may be depicted in the book, is the polar responses of the mother of his children, who visited him almost every week and loved him despite all the pain he'd caused her, and his lover just before his stroke, who never had the courage to visit him in his enfeebled state, but said she was always "with him" in spirit, though he was able to communicate to her, "chaque jour j'attends": each day I wait. I knew then that I would choose to be the kind of person who was there for those I loved despite my fears and stress, not the one who was there in spirit but not in person. The lover was a coward. Her selfish desire to cling to the healthy Bauby was, for me, inexcusable. Se behaved as if he'd already died, when this book clearly shows he was perhaps never more lucid about his connection to the world.

[Abrar Alarjan · Rating 4 out of 5]

في الحقيقة المشجع الأكبر ،هو الدار ،دار مسكيلياني، فمن يترجم لديهم غالبًا ترجمتهم بالفعل رائعة وتدهشني .

أما الرغبة الثانية لقراءة هذا الرواية الشبيهة نوعا ما بسيرة ذاتية ،هومقاومة الأمراض ،دائما أبحث عنه حتى ولو كان المرض جديدًا علي ولم أعرفه ،أود أن أعرف ماهي وجهة نظر المريض تجاه المرض وكيف هي مشاعره إزاءه .

أخيرًا فكرة الرواية أسرة جدًا ،وأتسائل هل شُفِي جون من مرضه ؟
لم يخبرنا بذلك المترجم ،أتمنى أن يقول ذلك في طبعات أخرى لهذه الرواية .

ثم إننا نحن القراء ،يتوجب علينا أن نقرأ المعوذات ثلاثًا ونحافظ على أبصارنا بأي وسيلة،كي لا نصاب بأي مرض يؤذي هذه النعمة العظيمة ،لأننا عند فقدانها لا نستطيع اكتشاف عظمة هذه الكتب والروايات ولا تأمل جمال السماء ولا أي شيء من مخلوقات الله .

تحديث : لقد توفي بعد صدورها بثلاثة أيام ،أمر مؤسف وموجع بالفعل . :(

[Steven Godin · Rating 4 out of 5]

Anyone that is able to get through this without showing the slightest bit of emotion is not a human being. A remarkable story of a remarkable man, so full of life one minute and reduced to movement in one eye the next, a haunting, harrowing look inside the mind of a person with locked-in syndrome you would think this would end up as a rant of anger and "why did this happen to me", but his dignified manner and spirit was truly inspirational and caught me out at just how uplifting it would turn out to be, although of course it still remained very moving. Two days after the book was published, Bauby was to died of pneumonia, but this is a lasting tribute that is definitely worth reading.

[Alistair · Rating 1 out of 5]

this is quite an achievement .
the writer a quadraplegic with locked in syndrome who died shortly after the publication of this book mangages to make himself into a totally unsympathetic character .
i really disliked this book i suppose because it has gained such an good reputation . this is mis-lit at its worst .
the author is completely self obsessed perhaps unsurprisingly and the profundity is not much above that found in a Hallmark card . it seems that the things the author misses most are his trips to Hong Kong , his BMW , his phone calls to important people and generally the go-go life of a magazine editor . one of the worst chapters is when he describes his selfishness towards his girlfriend or wife and manages to turn it into a piece of self glorification . she loves him anyway because he is such a brilliant and incorrible man . well so he thinks . the smugness is unbelievable .
it is all very pollyanerish and trite really . his realationship with his children and their mother seems superficial and distant .
with the recent revelations about false memoirs in this mis-lit genre i am very suspicious as to how much of the writer's story is true and how much of it was written by someone else . he supposedly set up an organisation to support those with locked in syndrome , just as Bob Geldof has supposedly saved the world .
the Guardian said " everyone in the country should own at least one copy " . why would anyone want more than one copy . I only own one copy of " The waste land " , so why should i or anyone buy 2 copies of this rubbish ?
Like many books the marketing story is more important than the book itself .
Harsh but fair !

[Odai Al-Saeed · Rating 4 out of 5]

ما تختزله هذه الرواية القصيرة من الخيال والقصص يكاد يفوق صفحاتها المائة والعشرون ..... وكأن الألم والإحساس بالمفارقة هو من صنع الفارق
رواية تفرغ منك ولا تفرغ منها يكاد هاجس السحر في طياتها ينبع بالفعل من كونها كتبت برمش العين اليسرى فالمفارق ليس له أداة تعبير غيرها ولا حيلة له سوى تلك الحكايا التي سوف ينسجها من ذكرى الماضي وخياله الأفاق..... لم تخلو صفحة من معلومة ثقافية تثري الخاطر.....رواية تستحق الثناء
إضافة لمن أراد أن يشاهد الفلم وهو يستحق المشاهدة :
the diving bell and the butterfly

[Laurel · Rating 4 out of 5]

This is one of those books where the story behind the story was more interesting to me than the book itself. For those who don't know, Jean-Dominique Bauby (the former editor-in-chief of French Elle) had a stroke in his mid 40s that left him with a body entirely paralyzed but a mind fully intact. This is referred to as locked-in syndrome, a condition that, in the author's words, is "like a mind in a jar."

The one part of his body that Bauby could move was his left eyelid. Remarkably, he was able to use this single movement to communicate. As a special alphabet was dictated to him, Bauby blinked when he heard the letter he wanted to convey. In this way, slowly and patiently, letters became words, then sentences, and ultimately ended in this memoir.

This in and of itself makes me want to give his book a 5 star rating, as the fact it is even in existence is extraordinary. But, while the book is well-written, there just lacked a sense of real introspection that I had been expecting. It left me wishing he had let us in to his thoughts a bit more deeply than he did. Still, absolutely worth the read.

[سماح عطية · Rating 4 out of 5]

وكنتُ أظن أن إرادة هيلين كيلر هي أقصى ما وصل إليه إنسان في تحديه للإعاقة!
ولكن لكلّ بشري قدرته على مواءمة ظروفٍ اضطر إليها!

[Ammar · Rating 5 out of 5]

One of the best short memoirs i ever read

Shows the multifacetes of the human condition

[Katy · Rating 5 out of 5]

What an literary treasure! The utter sadness of this author’s condition is magnificently juxtaposed to this heart warming memoir. Jean-Do, as his loved ones called him, has written an unbelievably upbeat and often humorous recollection of memorable events revisited during his most devastating period of life.

Once the editor in chief of Elle magazine, and a very high profile socialite in Paris, his magnificent mind is now relegated to a whirlwind of thoughts and anecdotes told in a most painfully slow episode of one letter at a time.

It is quite amazing how positively expressed he is given the untimely tragedy that has overtaken his life. That, I suppose, is his survival instinct.

At the age of 43, Jean-Do suffers a massive stroke that renders him entirely paralyzed from the neck to his toes, left in a condition called Locked-in syndrome. He is unable to speak or eat, and while he can turn his head, his only other ability is to be able to blink one eye. He uses that ability to communicate his memoir, dictating one individual letter of each word at a time, having previously thought out and memorized each chapter.

The writing is very engaging and enjoyable, exquisite actually. This man truly has astounding literary talents beyond his editorial skills. Most of the stories take place at the time after his stroke, so he is reflecting upon his motionless life in a wheelchair in a medical facility. His courage and love for life and his family is quite evident. His recognition of a life cut short and opportunities missed is truly heartbreaking.

Living each and everyday to its fullest is so very important, and recognizing life’s fragility is inevitable.

A short but very moving story that is both sad and uplifting at the same time. Although this book has been translated from French, it flows beautifully without any indications of “lost in the translation “. Ingenious!!

[Shovelmonkey1 · Rating 3 out of 5]

When I first heard about it I did not think it would be the sort of thing I would be interested in reading and definately not the sort of thing I would be interested in watching (having heard it had recently been turned into a film). One of my best friends, a man who is a great deal more sensitive and open minded than I could ever hope to be asked me if i'd read it. "A book about a man who wrote the book by blinking one eyelid?" I asked. "But I like the Die Hard Quadrology, 300 and Wilbur Smith novels - where do you think this book is going to fit into my world view? It won't fit! It will make me feel bad for hating it too" Anyway after a raised eye brow from my much less judgemental friend and with a view to being open minded I gave it a go....

Taaa-dah!
Open minded enlightenment achieved. This book was interesting and easy to read although if you are feeling a bit depressed then I would suggest avoiding it. Although that said, it is unlikely your situation is going to be worse than that of Jean Dominique Bauby so maybe it'll help you get a little perspective and stop you being such a sad sack.

The lucid way in which Jean-dominique describes what it feels like to be locked into his own body is amazing and the tireless descriptions are even more amazing when you consider how each word made it on to the page. Heartfelt, unique and inescapably sad. If you choose to read this book it will probably be the most unique thing you get to read this year.

[Jonathan K (Max Outlier) · Rating 5 out of 5]

For all those unfamiliar with this true story, it evokes an array of emotions.:sadness, curiosity and appreciation for life among them. Beautifully written, it engages at a deep level sad that it is. It's difficult to fathom how someone completely paralyzed, unable to speak, move or gesture could compose such a memoir. Fortunately the award winning film lived up to the story. A quick read, it's worth adding to your list if for no other reason than to remind us that we should appreciate each moment.