Locked in?

I’m halfway through reading this brilliant book that a lot of people will have heard of, or 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 eye 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? How would you cope? It is unimaginable.

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 his now 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. The condition of Locked-In Syndrome is more understood now, and Jean-Dominique set up a foundation for it 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. How would we cope if the only thing we had left was our mind? The strongest part of the body perhaps. 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 to dream that we can achieve our dreams. The power of the mind.

I also started thinking about the prisons that we can find themselves in. This lack of freedom that we do not choose, but we are stuck in, and then how do we cope? What do we do? And the power of positive thinking, which we can lose at times, which can drift off; sometimes we don’t even notice it leaving.

I read this week of the release of Weiwei. A free thinker and artist who, in our ‘modern world’, lives in one of the countries without freedom of expression, human rights or freedom of information. He was imprisoned because his beliefs are against those of China’s oppressive government. A man with the power of mind to stand up for his beliefs and try to achieve the freedom that many of us take for granted. He has been released, but at what cost to him? At the moment he can make no comment. Thus he is still living in an invisible prison and I will watch with interest what happens next. I wish him all the best.

Then there are the prisons that each of us may find ourselves in at any time of our lives. The bars that come up that prevent us doing what we want to do. Whether this is a government removing our freedom of expression or the removal of our human rights. Whether it is debt, which prevents us living how we would like to live. Similarly, lack of money, which stops us doing things. Or perhaps it is lack of confidence to do something. Or perhaps it is a physical illness that strikes us and suddenly we are not the same, or we think we are not the same as we find we cannot do easily what we once did before. Recently I’ve been inspired by a couple of writers, who have debilitating illnesses, but they are writing and doing their best to carry on as normal. And then there are the non-physical illnesses, such as depression and anxiety, which I have been dealing with for the past year, as have many other people. Although not a physical illness, it builds up and affects your ability to function, to enjoy the big things and the small things, colouring everything black and seeing negativity in everything; in the end it can result in a physical illness. And so the circle goes on.

All of these things can prevent us from doing things, achieving things. They can leave us thinking we are at the bottom of a hole with no way of climbing out. I visited an exhibition recently for the organisation MIND, which my friend, Gema Newby, helped to organise, and some of the artists/writers had come up with the idea of a well. That we all have this well inside of us. A negative thing that builds up, can overwhelm us, and the task of climbing out can become harder. On the outside, our clamber up can be made easier by hope, friends, family, therapists and interests, or goals, or even a pet. But for the person inside the well the climb seems like a Mount Everest to surmount. Sometimes the people on the outside will understand; sometimes they won’t.

Reading The Diving-Bell and the Butterfly I’m reminded how the smallest things should give us joy. Today is a sunny day and I’m intending to go out soon to the forest. The smallest things – the feel of the sun, the air on your face, walking under leaves where everything smells green, the chatter of birds. All these things. Everyone has the right to joy, to be happy. These things can be taken away so easily, which is why it is so important to make the most of everything, and I’m pretty guilty of not doing this lately. These simple things, which, really, are huge things - the essence of life.

And so I come back to the power of the mind. The power of the mind to surmount difficulties. The power of our minds to help ourselves. Yes the mind can also 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. I’m amazed when I read about the strength of people. All of us have problems, large or small. All of us know of other people – it may be ourselves – who have overcome or are dealing with massive problems. We all have the power to unlock the prisons inside our minds. Or to ask for help. The expression of free thought being one of our dearest things.

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.