Jean-Dominique Bauby – The Diving-Bell and the Butterfly (1998 – Fourth Estate Limited)
On 8 December 1995, Jean-Dominique Bauby, the editor-in-chief of the French fashion magazine Elle, suffered a massive stroke which left him with a condition called “locked-in syndrome.” Paralyzed and unable to speak, Bauby and his family and friends communicated via a code (using the French language frequency-ordered alphabet), in which Bauby blinked his left eyelid to indicate his thoughts and desires. Over the course of two months during the summer of 1996, Bauby “dictated” this slim volume, detailing how his life had changed since the stroke. These are not the ramblings of a man beseiged by illness and full of despair and self-pity – yet, who would blame him if they were? Rather, Bauby chose to examine his new life with humour and patience and strength – and, above all, appreciation. He assigned great value to his network of supporters: his children, his girlfriend, his friends, and the workers at the hospital, and he wrote of them with a personal candour that was exquisite and loving. To keep his mind active and free of sorrow, he indulged in the spirit of fantasy: at one stage, the hospital’s patroness, Empress Eugenie, became a dance-partner; in another, he was a Formula One race-car driver. He reflected on his travels before his stroke, reliving the sights, scents, and sounds of the places he had been to. In one particularly moving passage, he thought of the summer and imagined the going-ons of his friends:
In Brittany a pack of children returns from the market on bikes, every face radiant with laughter. Some of these kids have long since entered the age of major adolescent concerns, but along these rhododendron-lined Breton roads, everyone rediscovers lost innocence. This afternoon they will be boating around the island, the small outboard labouring against the current. Someone will be stretched out in the bows, eyes closed, arm trailing in the cool water. In the South a burning sun insists you retreat into the cool depths of the house. You fill sketchbooks with watercolours. A small cat with a broken leg seeks shady corners in the priest’s garden, and a little farther on, in the flat Camargue delta country, a cluster of young bulls skirts a marsh that gives off a smell of aniseed. And all over the country activities are under way for the great domestic event of the day. I know mothers everywhere are tired of preparing it, but for me it is a legendary forgotten ritual: lunch.
Bauby never railed angrily against his fate, choosing instead to embrace his new life with a courage that most of us would find difficult or impossible to summon, and his words are a gentle suggestion to face troubling and cruel adversity with energy and grace. Bauby only lived for sixteen months after his stroke, but he made the best of his time, even establishing The Association du Locked-In Syndrome (ALIS), to assist others afflicted with the same condition. The Diving-Bell and the Butterfly is also a generous gift from Bauby, not just to his family and friends, but to anyone who reads it.