Picture this: You go about your daily business as usual, doing the things you always like to do, and going to the places that you have always gone. Suddenly the whole world stops with a shudder as your muscles begin to fail you, and a searing headache accompanies the encroaching darkness as you black out. A stroke. Waking up, twenty days later, you find yourself unable to move at all. The doctors tell you that you have ‘locked-in syndrome’; you are effectively paralysed across your whole body. Your world has ended, you might think.
On 8 December 1995, this is what happened to Jean-Dominique Bauby, the then-editor-in-chief of French magazine Elle. Waking up in hospital in the northern French coastal town of Berck-sur-Mer, he found himself “paralysed from head to toe, his mind intact yet imprisoned inside his own body, unable to move or speak.” The only way he could communicate, or even move, is through the blinking of his left eyelid. Devastated, he discovered that he was, “exiled, paralysed, mute, half deaf, deprived of all pleasures and reduced to a jellyfish existence.”
Yet even despite such profound difficulties, Bauby was still able to create one of the most incredible achievements of modern literature. The Diving Bell and the Butterfly (1997) is a rare book in which the literary work itself is rivalled only by the effort made in writing it. It was produced over the course of ten months entirely through blinking to an assistant, who translated it to page via an alphabet chart ordered according to letters’ frequency of use (one blink means ‘e’, two is ‘s’, and so on).
The result is a short, but perfectly formed novel, part memoir, part fantasy, which describes the comings and goings of his life since the catastrophic onset of his condition. Although the novel does have an overarching narrative of sorts- specifically about Bauby and his acclimatisation to his new life at the hospital- each chapter is a small vignette, which stands semi-autonomously on its own.
The Butterfly Escapes
Some of the novel’s chapters are personal, describing things such as the mundanities of his new life- being dressed, having visitors, visiting the beach with his assistant- but also his passions and past experiences, his family and his fear that in being ‘locked in’ in this way, people will forget the person that he is inside. His cruel detachment from the world has taken away so much from Bauby, yet left him fully aware of the things which he has lost. “Grief surges over me,” he despairs. “My son sits patiently waiting — and I, his father, have lost the simple right to ruffle his bristly hair, clasp his downy neck, hug his body tight against me.”
Others exist in the dreamlike realm of Bauby’s escapist fantasies, in which he can not only transcend his condition, but reality and time itself. In this world he can become a famous film director, constructing scenes from his favourite movies in his empty room; befriend the long-dead Empress Eugenie and share jokes with her; or even simply indulge in the memory of foods he can no longer eat. The hallway becomes a ballroom, the rehab room the Court of Miracles. “Since you never return to reality,” Bauby explains, “your dreams don’t have the luxury of evaporating. Instead, they pile up one upon another to form a long ongoing pageant whose episodes recur with the insistence of a soap opera.”
Triumph in Tragedy
Despite fundamentally being an introspective work at heart, Bauby’s journalistic flair shines through nevertheless. He speckles his work with morsels of information about the places and people he meets, taking a genuine interest in his surroundings, revealing the history of the hospital, of the people he meets, and even the names of paint colours.
Not only does it reveal the deepest passions of his life, but it also reflects a deep and humanistic sensibility in the man; it betrays his enduring humanity even throughout the most dehumanising of circumstances.
I should also note that at a very neat 139 pages, The Diving Bell and the Butterfly manages to achieve a rare thing in packing so much into so few pages. As far as deep and insightful works on the nature of the human condition go, this is by far the most readable and convenient for travel. Most chapters are only a few pages long, some only a page. If, in the age of coronavirus, you find yourself making a ‘necessary and essential journey’ anywhere, this is an ideal read.
Tragically, on 9 March 1997, two days after the book was published, Jean-Dominique Bauby died. Yet his novel remains a true example of triumph over hardship, and the ability to fight on despite one’s disabilities to create something wonderful. Beyond that of course, it is also simply an excellent book.
See more: Doom Eternal Review: Is It That Good? by Green Ornstein
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