Bauby’s and Karol’s version of being

“All the World’s a stage,

And all the men and women merely players,

They have their exists and their entrances,

And one man in his time plays many parts”…

William Shakespeare

As you like it

Character 1: I’m embarrassed to say that it is only recently I found the time to read The Diving Bell and the Butterfly (1997), a wistful and reflective piece of work by Jean-Dominique Bauby, former editor-in-chief of Elle, a magazine that captivates the most passionate, sensual and body images conceivable. It is a magazine that seeks to enthral its readers in a paradigm of fashion and style.

However, when Bauby was 43 he suffered a stroke that resulted in what is typically known as ‘locked-in syndrome’. This condition practically destroys the whole operative system of the person, especially the signals we give all the time; pointing, gesturing, yawning, keeping or choosing not to maintain eye contact, shuddering, twitching and so on – all this stops (or most of it). This man of stature speaks of this tremendous change that took him from a top job in communications to a struggle to be understood.

Character 2: On the other hand, like most people I have spent hours watching reams of film about the great Pope who passed away recently. Well, you know what impressed me most about this man? His hands. Karol loved using his hands. He gesticulated, waved, blessed, gripped not to fall, pointed, clapped, hugged the little children, spread his hands on them, held people’s heads that revealed grief and tiredness. Karol was a man to observe. His hands were exquisite and divine.

How do Karol’s and Bauby’s story converge?

Both of them lost movement, but both chose to live, to search for the truth in facts and realities they were engrossed in.

Their disability was never a pretext to refrain from criticising and analysing society. They always spoke about matters that touched humanity at the deepest of levels. Their profound interpretation of the world, the lessons they helped us learn, the principles they endowed us with, were always expressed most strongly when they were away from the glamour and touched the deep-seated pit of pain. Discomfort has a strange way of making people shrewd. Maybe we need to listen to the people who ache, who have been turned down by society – wisdom comes from these because they really appreciate the importance of values.

Bauby wrote his story within a context of pain, but contained by a culture of conflicts and tensions. Bauby spoke of a reality that took him away from the people he loved, but somehow he still wanted to live and find new ways to connect with them. Karol was the same – at one youth gathering he said that he felt younger after he was given a stick because it helped him support his weight – inter-dependence is no sin! These people had the ability to see in their own condition a way of making life.

Pain makes you think. Soreness is valuable. The wisest people I know, the most enthralling stories I have read, the most intricate of personalities I read about, are those that have carried their own personal grief. I want to stop and believe that pain will never touch me, but I’m sure it will one day and I hope to make the best of it; maybe I can become the contemplative person I always aspired to be. It took Bauby years to write his book, a flick at a time.

Two days prior to publication of this bestseller he died. It took the Pope 27 years to grab most people’s attention, to read his work, to recognise his vision, to understand him (even though not necessarily agreeing with all his ideas). He kept reiterating the value of spirituality – of meeting self but with the help of others. We need others to touch

base – that is the prestige of humanity.

These two people taught citizenship. Society is there to listen to its shrewdest. If we miss out on these citizens of example we miss out on having an improved civilization.

Three weeks I’ve wallowed

in this deep place

this underplace

this grieving place

getting heavier and heavier

sleeping by day creeping out at night

Nothing I can do

Nothing I want to do

But stay small and still in the dark…

(Anazuldua 1987, p.186-7).

Dr Andrew Azzopardi is a social worker and teacher by profession. He is qualified in inclusive education and disability politics, lectures at the University of Malta and has presented research papers in numerous conferences and symposia. e-mail: [email protected]