Behind the Broken Façade

Two events this week have served to remind me of the importance of not underestimating the human brain.

For as long as I can remember, I have consciously made an effort to speak to disabled people as though they were able. This is no less important when it comes to addressing people who have had strokes, are in a coma, or have a condition that causes severe speech problems, such as severe cerebral palsy. One can never be sure as to how much they understand, so surely it is best to err on the side of caution and assume that they understand everything?

A newspaper article in The Daily Telegraph (Saturday, 23rd February 2008) illustrated the point about people in comas. It was reported that a woman was brought out of a coma by her husband shouting at her (Husband’s love and a rollicking save a coma wife, p. 7). Apparently, doctors told the husband that they were considering the need to turn off his wife’s life-support equipment, as there was no sign of recovery. The husband, who had been holding a bedside vigil for two weeks, grabbed his wife’s hand and shouted at her, telling her to make an effort, fight back, and not to leave him. He then left for a couple of hours to ‘get some fresh air’. When he returned two hours later, his wife was breathing spontaneously and subsequently made a full recovery. She reported that she could remember hearing him shouting at her and that made her cross; thus the stimulus to recovery.

Neurologists have confirmed that the unconscious brain continues to process information. This, of course, is a topical subject, having been brought to us in the television series Life on Mars, and most recent with the program’s sequel, Ashes to Ashes.

Which brings me to the second event of this week.

On Thursday, I went to the cinema to see the film The Diving-Bell & the Butterfly. This is not a blockbuster film. It is, however, a remarkable story and a very moving one. It was a film I really wanted to see, having read the original book in 1997.

The Diving Bell & the Butterfly was written by Jean-Dominique Bauby. Bauby was 42 years old and the editor of Elle magazine in Paris. In 1995, he suffered a massive stroke, which left him completely paralysed apart from the ability to move the lids of his left eye. This became his only means of communication. Over the next year, he managed to write the story of his stroke and to describe what it is like to suffer a perfectly active mind with no means of communication or movement. The condition is called ‘Locked-in Syndrome’. The story was dictated by having a secretary sit for hour upon hour, slowly reciting the vocabulary. Each time she reached the letter Bauby wanted, he would indicate by signalling with his eyelid. Thus, by such painstaking action, he dictated his words. Bauby died ten days after the book was published. I defy anyone not to be impressed by his tenacity and achievement, and not to be emotionally moved by those same endeavours. I also know that no one, who has either read the book or seen the film, will ever see a person with such a condition in the same light again. The story has the power to change perspectives. As the Evening Standard critic, Gilbert Adair wrote when reviewing the book:

‘…his closing sentence, just twelve flutters long, is one of the most heartrending in all of modern literature.’

It is.

The poet, Elizabeth Jennings, wrote a poem entitled Old Man. The title suggests the topic – that of an old man, beyond his prime, who requires the daily attention of carers for his well-being. In 2007, I wrote a response to Jennings's poem, suggesting that matters are not always what they seem to be. I reproduce it here:


Life’s Denouement
(after Old Man by Elizabeth Jennings)

Do not be fooled by my inaction.
My silent world is not what it seems.
You see an old man confined by
a bed, a chair, a room.
You perceive tranquillity, yet
I have no need for communication.

Chairbound?

I am not even earthbound.

My spirit has earned its freedom from
materialistic chains.
Knowledge now powers my
unencumbered travel. I exist
disassociated from your reality.

You think you tend to an old man.
Yet, you are satellite images
to where my world revolves.
That shadow is the real me:
waking with dawn, slipping away
by midday and, for now, returning
with the setting sun.

Time knows no boundaries.
Age is not what it seems;
death, a powerful invocation.
Your delusion is
my ultimate illusion.

I am not the old man you see before you.

I am.

© Copyright 2007 Dr Tusitala


Whatever the disability we are dealing with, whether it be a coma, paralysis after stroke, or the effects of old age, we must never assume that what we see is all there is. One day, we might be in a similar position of infirmity. Wouldn’t we then all wish that some enlightened person would see beyond the broken façade?