The Diving Bell and The Butterfly.

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I saw my first case of Locked-in syndrome in 2005, during my neuro-rehabilation rotation. He was a man of 43, and had had a brain injury on a motor bike, which had affected the part of the brain called ‘brain stem’. He could not move any limbs or neck, nor could he speak, eat, drink or do any motor tasks. The only movement he had was the blinking of eyelids. He could not even move his eyes in all directions.

The therapists were working with this gentleman to try and find a means of communication with his eye lids. When I saw him, they had managed to work out ‘yes’ and ‘no’. So one blink would mean yes, and two blinks would mean no. Other than this, the person was totally dependent for all his needs on the rehabilitation staff. 

I can never forget that man, being the first case of locked-in syndrome that I saw. What struck me most was, when I went to prescribe some antibiotics for yet another urine infection that he had developed because of his indwelling catheter, and I was making small talk with the nurses asking about him, and I glanced at him, I saw a tear roll down the corner of his eye. 

Of course, I went back home and read in detail about Locked in syndrome. I found that it happens because of an injury to the brainstem, or more precisely the area of the brain called Pons. Anatomically, brain stem is the part of the brain where all the neuronal bundles of the cortex converge as they meet the spinal cord and form the peripheral nervous system. In locked-in syndrome, therefore, the brain is undamaged but the relay station between the brain and the body is affected. 

An injury to this part of the brain means that the person can have their mental faculties intact, including consciousness, intelligence, memory, understanding, problem solving etc, however, the passage of any information below the brainstem is obstructed which is why they can not move or do anything at all. In some cases some reflexes like smile or smirk maybe preserved but all voluntary movements are lost. 

Locked in syndrome can occur as a consequence of brain injury, but also as a result of stroke or circulatory disorders, certain metabolic conditions particularly affecting the metabolism of sodium, as a result of drug overdose, or conditions like Multiple Sclerosis and Amyotrophic Lateral Sclerosis. 

As the name suggests, the person with locked-in-syndrome, actually becomes locked in. The person very much exists in the brain, but has no outlet at all. This is very different from coma or vegetative state, in which the consciousness is also affected. So a person with a locked in syndrome will be aware of what is happening around him but unable to do anything at all. 

Scary and horrifying as it sounds, I used to get nightmares about Locked in syndrome. And then I came across a book, called ‘The Diving Bell and the Butterfly’. This book was authored by a Frenchman called Jean Dominique Bauby, who suffered a stroke that resulted in him having a locked in syndrome. The book was written by him from his hospital bed, after the stroke, and it was a memoir of his life.The greatest part of this book, which gives me goosebumps to this day, is the story of how this book was written.

Jean Bauby was the editor of the famous French Fashion magazine ELLE. A successful, happily married man with 2 children, one day he suffered the stroke while on his usual way to work and woke up 20 days later in a hospital bed, unable to move, or speak or do anything at all except blink his eyes. He was left with a locked in syndrome. 

With help of his therapist Claude Mendibil, he ventured to ‘writing’ his memoir. The only movement he had was blinking of his left eyelid, as his right eye had to be sewn up due to an irrigation problem. The therapist had devised a technique whereby a transcriber recited the french frequency ordered alphabet i,e, instead of A,B,C,D etc they figured that the most frequently used alphabets be arranged chronologically so (E, S, A, R, I, N, T, U, L, etc.). When the appropriate alphabet came, Bauby would blink his left eye, and then go on to chose his next letter. This technique is called ‘partner assisted scanning’. 

The book took about 200,000 blinks to write and an average word took approximately two minutes. The complete book took ten months to write, during which the Mendibil and Bauby worked for at least 4 hours a day. 

It is a humbling experience to read that book. The minute you realize the effort and the dedication that would have gone into creating it, you are struck with reverence. Holding the book in your hands takes you into the room where the patience and dedication of both Mendibil and Bauby, is at play. I sometimes pause and think what would have been the relationship between those two. What would have been the dynamics at work here, and how poignant and out-worldly love they would have felt for each other.

The book was published in france on 6th March 1997, and went on to becoming an instant hit and an international best seller. 3 days after the book came into the market, Bauby died of pneumonia. But leaving an insight into the mind of a locked in patient, that was unprecedented. 

The name ‘diving bell and the butterfly’: what a beautiful analogy it is to the mind of a locked in person. A diving bell, as the name suggests is used to send divers underwater. The pressure of the water keep the air trapped inside the bell, as the divers are lowered. Imagine being a butterfly trapped in that air chamber!

 

Arshia 

Nov 28, 2013.

 

 

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6 thoughts on “The Diving Bell and The Butterfly.

  1. So well written!
    The book has also been made into a movie (by the same name) in 2007 and I would definitely recommend a watch. I’m not sure but I believe there was some controversy as to how true to the book it is, but watch it for the music and the visuals if nothing else.

    1. Thank you!

      I haven’t seen the movie yet, but I do plan to.

      When you read the book, you realize that any controversy it may have generated falls short of the soul of the book. I can’t imagine sitting with someone for hours on end, trying them to chose their letters with blinks, form the letters into words and sentences. In the same way, I can’t imagine, spending the whole of my day, formulating sentences word for word in anticipation of the 4 hours when my therapist would come and I would know exactly which words to dictate.

      Anyone who has ever written anything, would know what the act of writing involves. And in this particular case, having someone else to be your words, your pen, your eraser: WOW, what a commitment!

      1. Interesting 🙂 I never thought of it that way.

        When I watched the movie 3 years ago, for me, it was more of *what* he said rather than the prep work that went behind what he had to say. Although that is probably because at the time, my mother was still in a minimally conscious state. In the absence of any communication from her side, I was mostly trying to understand what might have been going on in her mind. It is indeed terrifying to think that you have all these thoughts and there is just no way to get them across.

        As an aside, I wish every therapist had the empathy and understanding that you have.

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