Locked In

Do you ever feel like you’re locked inside yourself? You want to reach out, but the words just aren’t there.  Maybe you’re not even sure how you’re feeling.  Maybe you’re too tired to bother.  Maybe you’ve been hurt in the past and are frightened of being rejected again.

Whatever the reason for it, being ‘locked in’ is a horrible place to be.  But imagine if this was a physical as well as a psychological reality.  Imagine if you were fully conscious of every detail of your life, but unable to communicate with others, paralysed within your own body. There’s a short story by Roald Dahl about a woman who has spent her life being oppressed by her husband.  When he dies, his brain and one of his eyes are keep alive in a basin.  His widow gets her revenge by making him watch her doing all the things he hated in his lifetime, whilst pretending to look after him.  It looks like an approximation of a living hell.

Whilst Dahl’s story is a fantasy,  ‘locked in syndrome’  is all too real.  The condition is most commonly caused by a stroke severing the connection between the brain and the body. Those affected by it can think, hear and feel but can’t speak or communicate. It isn’t classed as a disease, and its nature means that it is difficult to identify.  Patients may be dismissed as brain-damaged or worse when in fact they are completely sentient.

In such a situation, it is tempting to assume that such a patient would prefer to be dead. In some cases this is true.  Tony Nicklinson  had a stroke in 2005 and is paralysed from the neck down. He communicates by blinking his eye at an alphabet board and has been campaigning for the right to die.  But others have taken a different approach.

Consider for example, Jean-Dominique Bauby, former editor of French Elle.  Following a stroke he was left paralysed, like Tony, except for one eye.  Despite his condition, Bauby wrote a memoir ‘The Diving Bell and the Butterfly’.  He composed and edited it entirely in his head, then dictated it word for word by blinking. He also enjoyed playing hangman with his son. Two days after the book’s publication, Bauby died of heart failure.  The book was made into a film and nominated for four Academy Awards.

Of his writing, Bauby said this, “There is so much to do. You can wander off in space or in time, set out for Tierra del Fuego or for King Midas’s court. You can visit the woman you love, slide down beside her and stroke her still-sleeping face. You can build castles in Spain, steal the Golden Fleece, discover Atlantis, realize your childhood dreams and adult ambitions.”

Bauby achieved more with the blink of an eye, than most of us do in a lifetime.

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