What is “locked in syndrome?” How did it affect Jean-Dominique Bauby’s life?
How does Jean-Do cope with his condition?
Explain the system that Henriette (Jean-Do’s speech therapist) devises to help Jean-Do communicate. Why does she become angry when Jean-Do expresses a desire to die?
How does the cinematography (HOW the film was shot/edited) help the viewer to understand Jean-Do’s condition?
Did you enjoy the film? EXPLAIN your answer.
About the Disorder: Locked-In Syndrome
What is Locked-In Syndrome?
Locked-in syndrome is a rare neurological disorder characterized by complete paralysis of voluntary muscles in all parts of the body except for those that control eye movement. It may result from traumatic brain injury, diseases of the circulatory system, diseases that destroy the myelin sheath surrounding nerve cells, or medication overdose. Individuals with locked-in syndrome are conscious and can think and reason, but are unable to speak or move. The disorder leaves individuals completely mute and paralyzed. Communication may be possible with blinking eye movements
Is there any treatment?
There is no cure for locked-in syndrome, nor is there a standard course of treatment. A therapy called functional neuromuscular stimulation, which uses electrodes to stimulate muscle reflexes, may help activate some paralyzed muscles. Several devices to help communication are available. Other treatment is symptomatic and supportive.
What is the prognosis?
While in rare cases some patients may regain certain functions, the chances for motor recovery are very limited.
What research is being done?
The NINDS (National Institute of Neurological Disorders and Stroke) supports research on neurological disorders that can cause locked-in syndrome. The goals of this research are to find ways to prevent, treat, and cure these disorders.
About the Film: The Diving Bell and the Butterfly
The film titled ‘The Diving Bell and the Butterfly’ is a biographical drama motion picture based upon Jean-Dominique Bauby’s chronicles of the similar name, (French: Le scaphandre et le papillon). The movie represent Bauby’s days following him suffering an enormous stroke, on the 8th of December in the year 1995, when he was 42 years old that left him in a state recognized as the locked-in disorder. The state caused him to be paralyzed neck down. Even though both his eyes were still functional, his right eye had not been irrigating as it should be and that is when the doctors made a decision to stitch the right eye, for the fear that the problem would turn out to be infectious. By the time it was all done, he had only his left eyelid that he could blink in order to communicate with the world.
The Plot of the Film:
The beginning of the motion picture is a narration by the lead character’s in the film, Bauby (played by Mathieu Amalric), also called as ‘Jean-Do’ by his friends, through a first person’s point of view. The movie unfastens as Bauby comes around from his 3-week long coma, where he’s in an infirmary in Berck-sur-Mer, in France. Subsequent to a preliminary, somewhat over-optimistic examination from one of the doctors there, a neurologist makes it clear that Bauby suffers from a locked-in disorder, which is an awfully rare state wherein the individual is almost absolutely physically paralyzed, however remains psychologically normal. In the beginning, the spectator largely hears Bauby’s “feelings” (he believes he is talking but that no-one’s listening to him) that are remote to other characters in the film, and are viewed through his functioning eye (his left eye).
A physical therapist as well as a speech therapist tries to assist Bauby in becoming as efficient as feasible. Bauby can’t talk, but he builds up a method of communication through his language & speech therapist by batting the left eyelid.
Progressively, the movie’s restricted viewpoint becomes wider, and the spectator begins to perceive Bauby from the ‘outside’, over and above experiencing the incidents from Bauby’s past, embracing a trip to Lourdes. Bauby also imagines, fantasizes of beaches, of mountains, of the Empress Eugénie, along with the erotic feast in the company of the therapist. It’s disclosed that Bauby was the editor for the fashionable French fashion publication titled Elle, & Bauby had an agreement to pen down a book. He makes a decision that he’ll still pen down that book by using his sluggish and wearing communication methods. A lady is brought in from the publish house where he had the innovative book agreement & she takes dictation.
The original book makes clear what it’s like to live his life, to be him, to be trapped within that body that seems to him like being caught within an unfashionable marine diving suit that has a brass head covering, known as scaphandre in French. Yet, the others more or less perceive his spirits, still lively, just like a “Butterfly”.
The narrative of Bauby’s script is juxtaposing to his reminiscences and qualms until the stroke that changed his life. We witness his three children’s mother (the woman he never marries), his kids, his friends, his mistress, & also his father. Bauby encounters people who were a part of his past & whose lives do bear a resemblance to that of his own little “entrapment”- so here it is: a companion who was abducted in Beirut, after which he was held in solitary captivity for about 4 years, plus his very own father (aged 92), who is placed in a confinement in his own house, because he’s too fragile to move down 4 flight of the stairs. Eventually, Bauby completes his chronicle and listens to his critics’ reactions. Nevertheless, he passes away because of pneumonia 10 days past its publication.
James Kirkup, The Independent (UK), Wednesday 12 March 1997
A voice reaches us, crying out from the depths of a profound silence: "I am alive, I can think, and no one has the right to deny me these two realities . . ."
The words were conveyed by a flicker of the left eyelid and come from a truly extraordinary book, Le Scaphandre et le papillon ("The Deep-sea Diver and the Butterfly") by a former journalist, Jean-Dominique Bauby. He worked for journals like the Quotidien de Paris and Paris Match and for four years until December 1995 was the very successful chief editor of Elle.
Then the unthinkable happened. A cardiovascular accident paralysed him and sent him into a deep coma, from which he emerged 20 days later in the Hopital Maritime at Berck, on the north-east coast of France, his brain intact, but able only to blink his left eyelid. He was diagnosed as suffering from the rare disease called "Locked-in Syndrome", unable to breathe, swallow or eat without assistance.
In this inert body, the brain was working furiously, with a mixture of rage, exasperation and wild humour, trying to make people understand what he was thinking. With the help of a specialised nurse, Claude Mendibil, despatched by the publisher Robert Laffont, he was able to write his book, using only his ability to blink at the most frequently used letters of the alphabet - E, S, A, R, I, N, T and so on, while Mendibil pointed to them on a screen: one blink for "yes", two blinks for "no".
He would spend most of the night editing his thoughts and composing sentences, which he memorised so that when Mendibil arrived in the morning he could dictate the latest instalment to her in a succession of blinks. The man's courageous spirit and the passionate tracking of a good story were combined in this supreme journalistic effort to produce a book whose vivid title describes the immobile state of his body (the deep-sea diver in one of those heavy old-fashioned diving suits) and the state of his mind, fluttering like a rare butterfly from letter to letter, from word to word, page to page to the end of a book of just over 100 pages.
One would expect from this process a stiff factual report, but that is not the case. The book reads in flowing images that illuminate his predicament and enlighten our own darkness in the face of this mystery. The style is clear and fresh, and not without elegance, imagination and shafts of humour. One of the beauties of the book is the portrait that emerges of the attentive speech therapist who does her best to teach him to re-learn letters and syllables. There are bleak pictures of the wintry beach at Berck Plage, a melancholy symbol of his own sense of desertion. In his hypersensitive condition, each sound becomes unbearable, meaningless noise, and when his two sons come to visit him their capers have to be endured with saintly patience.
He is also in search of past time, of memory itself, of the books he has read, the poems he learnt by heart; even more sad, he thinks of all the books he wanted to read and hadn't done so. He has to listen to someone else reading them to him. He remembers a bet he lost at a racetrack, one of the many flashes of wry humour in his book. Above all, he remembers his life as a journalist, as an editor, with its agonies and disappointments, his sense of being exploited by the media, yet his desire, in his post as editor of Elle, to do something for the rights of women, to help them free themselves from various tyrannies.
All this is admirably conveyed in a documentary about Bauby's last year made with scrupulous care and great sensitivity by Jean-Jacques Beineix, already programmed before his death to be shown on the weekly literary television programme Bouillon de Culture, directed by Bernard Pivot. Guests are journalist friends of Bauby, the film director himself, the doctor and his assistant Mendibil at Berck. Beineix' title is significant, and ironic: Assigne a residence ("House Arrest"). He says Bauby became a real actor, eager to make the film work perfectly.
Bauby's determination to overcome difficulties that would send most of us into irretrievable depths of despair are expressed in the words: "I have decided to carry on my fight against fatality by setting up the first association in the world for people suffering from Locked-In Syndrome." So he created ALIS (Association du Locked-In Syndrome) and became its first president, stating his objectives thus: "To collect all the present information about the syndrome, to allow sufferers to communicate better with one another, to create means of breaking the solitude and isolation, and to make them true citizens of the 21st century." Already many famous people have become sponsors.
Jean-Dominique Bauby, journalist and writer: born Paris 1952; married (one son, one daughter); died Garches 9 March 1997.