Anyone reading the news this week could not help but be moved by the story of Rom Houben, a 46-year-old Belgian man who had spent the last 23 years in what doctors wrongly believed to be a coma. A scan in 2006 revealed that despite his total paralysis, Houben’s brain had been completely active all along. Now with the ability to communicate using a special keyboard, Houben has recently revealed to the world his frustration in being trapped inside a body that failed to function, unable to interact or communicate with the world around him.
If this tragic tale piqued your interest in locked-in syndrome, and you find yourself wondering what Rom Houben’s life must be like, perhaps you should check out Julian Schnabel’s amazing film, The Diving Bell and the Butterfly. Made in 2007, the film tells the true story of Jean-Dominique Bauby, editor of French fashion magazine Elle, who at the age 43 suffered a stroke that left him paralysed. A victim of locked-in syndrome, Jean-Do’s active mind was ensconced in an inactive body, with no hope of cure.
The only part of Bauby’s body that functioned was his left eye, and it was this small mercy that became his saving grace. With the aid of a speech therapist, who designed a communication system based on reading out the alphabet, Jean-Do was able to blink yes or no answers to spell out words. In an incredible story of unbelievable patience, perseverance and hope, Jean-Do went on to spell out, letter by letter, word by word, his memoirs, which became a best selling book.
You may be forgiven for thinking that the tale of a bed-ridden paraplegic would not be the most cinematic of films, but it’s here where the director’s treatment of his material is truly original. Schnabel begins the film from Jean-Do’s point of view and for the first 13 minutes we see the world entirely from his damaged eyes. The cinematography is truly exceptional as we are presented with Bauby’s fragmented vision – flashes of out of focus images of doctors and therapists leaning over his stricken body, explaining his illness to him. We even see a remarkable point of view shot from behind Jean-Do’s eyelid as a doctor sews up his injured right eye.
It’s this amazing camerawork that makes the viewer directly experience the restrictive world of Jean-Do, and although the film eventually breaks free from the confines of his point of view, we continually return to his perspective to share his inner thoughts.
And whilst the overwhelming emotion is one of frustration at being trapped in his body, Jean-Do’s voice over functions to lighten the mood and remind us that despite everything that has happened to him, he retains his mischievous sense of humour. When being treated by the two beautiful therapists, the womaniser in him can’t help but curse his own luck at being able to look but not touch. It’s moments like these that ensure that the tone of the film never descends into one of pity. There are moments of pure sadness, such as when Jean-Do voices his realisation that he will never again be able to ruffle his fingers through his children’s hair. But he soon realises that he has two powerful tools at his disposal – memory and imagination, and whilst his body is immobile, these two tools give him the freedom to take his mind anywhere he wants to go.
The end result is an uplifting film about hope, nowhere near as depressing as the subject matter may suggest. Original, cinematic and never over sentimental, it’s a celebration of the strength of the human spirit – the kind of film that makes you want to be a better person and live a better life. Let’s just hope there’s no Hollywood remake with Tom Hanks on the horizon.
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