In December 1995, Jean-Dominique Bauby, the ex-editor-in-chief of Elle magazine, suffered a severe stroke that damaged his brain stem. A few weeks later he came out of the coma only to discover himself in a condition called LIS, Locked-In-Syndrome, quite possibly the cruellest fate nature has to offer (fortunately it's a very rare condition).

The prognosis left little room for improvement - Bauby was sentenced to life in a cell no larger than the skin of his body.

Bauby was "locked in" - he was completely paralysed, not just waist down, or even neck down, but completely. He could only manage to blink his left eye. Yet his mind was still quite intact. This condition, which makes communication with the outside world almost impossible, and extremely tedious at best, did not stop Bauby from coming up with a novel. Painstakingly, during the summer following his stroke, Bauby dictated the book using the only method available to him - an arduous method of dictation based on selecting letters from the alphabet by the blinking of the eye.

Even in the face of such unthinkable circumstances, Bauby retains his sense of humour, and somehow manages to avoid complete despair and the madness such a fate would drive weaker minds into - his writing is brilliant, witty and deep. Although the disability of the writer would earn sympathy points from everyone but the most cold hearted reader, the writing needs no sympathy; by any standards "The Diving Bell & the Butterfly" is a masterpiece.

I remember receiving the book as a Christmas present a few years back. From the very first pages I was hooked, and went through the whole inspiring, emotional and spellbinding experience of reading it cover to cover during Christmas day. It took considerable willpower to put the book down long enough to take a brake to eat or go to the bathroom.

Bauby writes about his life as an LIS patient - with his mind trapped in the totally constricting "diving bell" of his lifeless body, in his dreams he is still free to roam like a butterfly. He takes us into the landscapes that the butterfly travels in - the remarkable world of his imagination, undoubtedly refined, just as his agony and suffering, by modern medicine that allows him to continue living in this horrible state. His writing is often almost lyrical, and always beautiful, complete, and gripping.

With a humorous touch he describes the nurses who he has given nicknames to to capture their essence and behaviour. He writes about his new living environment, and the horrible solitude he is condemned to. Yet the atmosphere of the text is not dark or desparate.

Quite remarkably there is no self-pity in his writings - there is irony, there is imagination, there is humour and contemplation but no self-pity. This is what makes the novel an extraordinary source of inspiration - if someone in those circumstances can still remain so strong willed, and avoid complete despair, surely we can overcome all the troubles we may face in our lives, troubles which almost invariably must be smaller.

In March 1997, the same year his book was published, Bauby experienced another stroke, which finally led him to the relief of a merciful death.

On a personal note - what made the reading experience that much more powerful, distressing and awe-inspiring for me was that I have had a few glimpses of what the Locked-In-Syndrome might feel like; I occasionally experience a fairly common, harmless (but distressing to many) condition called "awareness during sleep paralysis", or ASP. During REM sleep, when you dream, your body is paralysed completely to stop you from moving along with your dream. In ASP, this paralysis does not end immediately when you wake up - you wake up in a condition much similar to the Locked-In-Syndrome; you can only move your eyelids, and perhaps your tongue.

Although ASP typically lasts only seconds, not much more than a half a minute at best, the experience can be terrifying, claustrophobic and panic-inducing. Half a minute can feel like an eternity. I have learned to keep my cool during ASP, knowing that it will quickly end, but I don't know how long I could preserve my sanity were that condition permanent. The thought of it is... unthinkable.

In conclusion, Bauby's book is an extraordinary monument to human courage and fortitude at the face of adversity - it is a captivating read that will leave you humble, and give you a whole new appreciation for the life that you have. "The Diving Bell & the Butterfly" is a novel that nobody should pass on.


Recommended: Yes