How can we even imagine what it must be like to have Locked-In Syndrome? Unable to move anything, but still completely conscious and aware. The account by Jean-Dominique Bauby challenges us to make the effort to do exactly that.

The Diving Bell and the Butterfly comes in several formats and each have their strengths. There is the book which was a sensation when it was first published in 1997 and which has since been translated into many languages. The French feature film was released in 2007 with an amazing performance by Mathieu Amalric. It is clear from this film that he had the opportunity to watch the documentary by Jean-Jacques Beineix which followed Jean-Dominique Bauby in his hospital life at Berck near Le Havre.

The feature film uses a stationary camera position and low camera angle to give an impression of what it must be like not to be able to move your head, so that there is no panning around to see around, and people approach with their waist at eye level. People appear and disappear with disconcerting suddenness. The diving bell image which starts the book is vividly filmed, in such a way that the diver’s face is not even recognisable through the water and the diver’s helmet. The documentary film is also very good on the irritating sounds of the hospital, which for Jean-Do can be excruciating because of a hearing problem.

The book so exhaustively refined in Jean-Do’s night-time waking hours, and so laboriously dictated letter-by-letter to the assistant assigned to him by his publisher, is like poetry, full of metaphors and unexplained images. This makes it difficult to film, and also creates difficulties for readers who do not share Bauby’s cultural hinterland. Examples include the chapter on Empress Josephine, or when Bauby refers to Figaro (the Barber of Seville) when relating the episodes when he shaved his father, and then himself relies on a nurse to shave him. The Empress chapter actually contains the startling episode when Bauby sees himself as a monster reflected in a window – beautifully recreated in the documentary. The text is enriched by more than just the cultural allusions. Some of my international students have found this classic ‘illness narrative’ very difficult to engage with because they have found the language so allusive and poetic. But stick with it, because this short memoir is haunting in its impact. In just one instance, the occupational therapist’s remark about being ready for a wheel-chair, which is repeated in the documentary, is an occasion in the book for images of an atomic explosion, and a guillotine blade, as it sparks in Jean-Do the truth that he will never recover. The film recreates the visual impressions of hospital life and his recollections of life-before-stroke, but cannot reproduce the impact of Bauby’s words and images about his feelings.

There is an unavoidable sadness here, even as Bauby recollects some hilarious episodes from his past life. Indeed he finds humour, of a very black variety, in his new existence. Depending on his mood, an event – such as being bathed – can be hilarious one day and provoke profound depression the next. The helplessness is excruciating, and clinicians must read this, if only to appreciate how very small details can have such significant effects on people they are caring for – leaving the TV on, or turning it off, at the wrong time can be agonising for the person who is powerless to do anything about it. Trying to dislodge a fly on his nose is for Jean-Do equivalent to Olympic wrestling, and all the worse on a Sunday when there is no-one around to ask for help.

Essential reading.

Jean-Dominique Bauby (1997) The Diving-Bell and the Butterfly (translated Jeremy Leggatt), London Fourth Estate

(originally pub. in French as Le Scaphandre et le Papillon 1997)

Feature Film Le Scaphandre et le Papillon Directed Julien Schnabel, starring Mathieu Amalric, Emmanuelle Seigner, Marie-Josée Croze, Anne Consigny, Patrick Chesnais, Niels Arestup, Olatz Lopez Garmendia, Jean-Pierre Cassel, Marina Hands, Max Von Sydow

Documentary film Locked-in Syndrome by Jean-Jacques Beineix (1997) (27min) available with English commentary (The Works) on Coventry University Helix Media player as     (CU Password required)   

Audio book available:


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