Liz Kessler grew up in Southport and studied English at Loughborough University. More recently, she gained a Masters Degree in Creative Writing at Manchester Metropolitan University, and worked as a teacher and a journalist before becoming a full-time writer. After a trip round Europe in a campervan, she settled in St Ives, Cornwall, where she now lives. Liz is the author of eight books for children. Her 'Emily Windsnap' series, about a girl who is half mermaid, has appeared on the New York Times Best Seller list and been translated into over 20 languages. She has also written a series about a girl called Philippa Fisher and her fairy godsister. Her latest standalone book, A Year Without Autumn, has been shortlisted for the 2012 Blue Peter Book of the Year Award. Here Liz writes about Jean-Dominique Bauby's The Diving Bell and the Butterfly.
Liz Kessler on The Diving Bell and the Butterfly by Jean-Dominique Bauby
I have a slight tendency to worry about my health.
If you know me, that sentence will probably have made you guffaw. OK, I have quite a large tendency to worry about my health. But not all the time; only when there's something wrong with me. I think it's a common affliction amongst children's authors. Too much imagination, too much time spent on our own, and too many notes from our editors telling us to focus on the little details: it's a heady combination for anyone with a tendency to worry about their health.
The other thing that makes me worry is when I hear of someone with a serious illness. It doesn't matter how rare, or how unlikely I am to get it – my ability to worry that it might happen to me is impressive. It makes watching medical dramas uncomfortable. I recently had to stop watching Grey's Anatomy, because every time a patient appeared with a new illness, I got anxious about the possibility that it might one day happen to me.
In this context, you might think that a book about someone whose life is devastated by a massive stroke would be one for my 'Avoid at all costs' pile. In fact, the book in question is one of my favourite books of all time.
The Diving-Bell and the Butterfly is one of the most astonishing, moving and mind-expanding books I've ever read. Each short chapter is like a story in itself, or a mini-play - or even a poem. The emotions described, the scenes retold and the language used to tell them are at the same time exquisitely beautiful and unbelievably painful. This is a book where you feel every word has been hand-picked. And indeed, it has.
As the author says: '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.'
The reason for this painstaking operation is that the entire book was written by a man whose stroke left him completely paralysed, speechless and able to move nothing but a single eyelid. It was by using this eyelid that he 'dictated' the entire book. One letter at a time.
This fact in itself is enough to make the book a staggering accomplishment. But it is much more than that. It is an incredibly moving memoir and an intricate record of a condition that it would otherwise be inconceivable to imagine learning about in such detail. Above all, it is an act of stunning creativity produced at a time of a man's life when most people would have written him off as a breath away from dead. 'Cabbage' is the word that some would use.
Cabbages cannot write bestselling books.
Best-selling and possibly life-changing. It is certainly one of the best weapons I have come across with which to attack my hypochondriac tendencies.
When I find myself worrying about some minor ailment, all I need to do is think about what Bauby has achieved and I cannot think of any reason to feel worried or negative. His condition is described as 'Locked-In Syndrome'. A more fitting description would be hard to find. We're talking about a man who could do literally nothing apart from this one tiny movement with his left eyelid. Who could hear and see the world around him, but could not interact with it in any way. Whose body's organs needed such a level of medical machinery to function that the mere thought of swallowing was something he fantasized about. That is how paralysed he was. And yet, he produced a book full of the highest levels of humour, tenderness and poetry. I cannot possibly think about complaining that my cold is bothering me when I think about this.
The fact that someone in his condition could produce something so brilliantly written, so compassionate, so intricate and honest - if you'll forgive me sounding a tad clichéd - does make me think we could probably achieve anything we wanted to, if we put our minds to it.
Don't get me wrong. It is not a happy read. It is heartbreaking, in fact. The description of his interaction with his children is almost unbearable:
Grief surges over me. His face not two feet from mine, my son sits patiently waiting - and I, his father, have lost the simple right to ruffle his bristly hair, clasp his downy neck, hug his small, lithe, warm body tight against me. There are no words to express it. My condition is monstrous, iniquitous, revolting, horrible.
The play that the author imagines being made of his life is heart-rending: the final scene, in which the main character rises from his bed for the first time and walks around the stage, followed by the fade to black and his offstage voice declaring, 'Shit! It was only a dream!', sums up the agony of his situation.
All of these moments make the reader aware of two things: one, how unimaginably horrific his condition must have been. And two, the extent of the human capacity to survive, to imagine, and to create. This book makes me believe these things are boundless. It is a beautiful, heartbreaking read, and at the same time a life-affirming inspiration that makes me want to stretch both my creativity and myself to be the best that they can be.
[All the pieces that have appeared in this series, with the links to them, are listed in the index here.]