I’m reading a brilliant book that a lot of people will have read. It is Jean-Dominique Bauby’s The Diving Bell and the Butterfly. On the front of the book there is a quote from the Financial Times calling it “one of the greatest books of the century”. I’m inclined to agree. It is probably the most inspiring book I have ever read.
Why is it brilliant? Because the author found himself locked inside a body that no longer worked. The only thing he had left was his mind and one eye, which still functioned. The other one had been sewn shut in the hospital and his body was paralysed. I tried to imagine the overwhelming fear and horror at waking up to find yourself in this position. But I can’t. Could anyone imagine this?
Jean-Dominique was an editor, a man of words, and had two children. Then he suffered a stroke. He was about the same age as me. The title of the book comes from his idea that his existence in this new body, which no longer worked and was a constant source of pain, felt like being inside a diving bell. When reading the book I imagined his mind as the butterfly, which could fly free, leaving the lifeless body behind. And his mind really flies free. His existence becomes one created from his memories and what he can view through one eye in a hospital room.
Locked-In Syndrome is more understood now, and Jean-Dominique set up a foundation for the condition in 1996. Back then, it was more of a mystery. The thing that stood out for me was his hope. It’s not a book filled with self-pity or self-loathing, but hope. This and the indominable strength of the mind, which flies free. How would we cope if the only thing we had left was our mind? Who we are. With it, I like to think, we can do anything. Or at least, we can dream that we can do anything. We live in a world in which most things are possible. We can dream that we can achieve our dreams.
People can find themselves in many forms of ‘prison’. This lack of freedom that we do not choose, but we are stuck in, and then how do we cope? What do we do? The power of positive thinking is something we can easily lose at times; sometimes we don’t even notice it leaving.
I started thinking about Weiwei, who created a work of art using porcelain sunflower seeds at the Tate Gallery in London to symbolise the human condition in his country. There were one million of them, which took 1,600 people two and a half years to make. They looked identical and unimportant, but close up, they were all unique. For Weiwei, they represented the relationship between the Chinese people (the seeds) and the government (the feet of visitors walking across them, oblivious).
A free thinker and artist who, in our ‘modern world’, lives in one of those countries lacking freedom of expression, human rights or freedom of information. Weiwei, like many others, is a man with the power of mind to stand up for his beliefs and try to bring change. Freedom of expression is such a precious thing and like oxygen to an artist.
Then there are the invisible prisons that we may find ourselves in at any time of our lives. The bars that come up and prevent us doing what we want to do. Whether this is a government removing our freedom or human rights; whether it is lack of money or debt, which prevents us living how we would like to live. Or perhaps it is simply a lack of confidence to do something or a physical illness that strikes us and suddenly we are not the same, or we think we are not the same.
Since finding the online writing groups, I’ve been inspired by a couple of indie writers, who have debilitating illnesses, but they are writing and doing their best to carry on as normal. Then there are the non-physical illnesses, such as depression and anxiety, which can build up and affect your ability to function, to enjoy things, big or small, colouring everything black. It takes great power of mind to come out at the other side.
Reading The Diving-Bell and the Butterfly, I’m reminded how the smallest things give us joy – the feel of the sun, the air on your face, walking under leaves where everything smells green, the chatter of birds, laughing with friends; all these things. Everyone has the right to joy, to be happy. So I come back to the power of the mind to surmount difficulties. Yes, it can trick us at times, or lock us into negative thought patterns and inaction, but mainly it has the power to ride out the difficulties around us.
In the case of Jean-Dominique Dauby, it was a speech therapist called Sandrine who finally gave him a way of reconnecting with the outside world, and his family and friends. She gave him the power to communicate so he could release his thoughts, which had been his only companions for so long, and the butterfly could fly free.
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