Sometimes I wish we could recall what it feels like to be born, to be immersed in a world that is strange and new and constantly unfamiliar. What is it like for a child to go to sleep, open her eyes, and be part of a reality that makes no sense? The sounds that people utter to her are just that – sounds. A cacophony of clucks, grunts, hard Ts and soft Ss that fill the ears and register little with the brain until it has something to associate with them. Sounds have no real meaning yet for the child hasn’t learned what they represent in her current existence. All objects are alien, all tastes and tactile experiences new. We learn, slowly, how to connect with the larger world, how to repeat the sounds we hear bantered about us, how to link those sounds to meaning and finally how to make ourselves understood by others who speak the same language. But what a strange first year or two that must be. Dropped into a world that preexists and solely reliant on others to survive, to learn to navigate this place where one’s life will unfold.
Of course, we all have traversed this terrain but most of us have no recollection of what is was like to be preverbal, to struggle to understand others or make our needs and wants understood. Yet what happens if a person is forced into this state later in life? What is it like to become dependent, inarticulate and immobile in a world that once was familiar? I am taken to this place of strange and painful frustration in the book The Diving Bell and The Butterfly written by Jean-Dominique Bauby in 1997. It is a small memoir, only 130 pages, that transports the reader into the mind of Bauby, once a titan in the fashion world as editor at a French magazine, as he struggles to communicate with people after a freakish accident leaves him with locked-in syndrome, a kind of brain injury that renders its victim “imprisoned inside his own body, unable to speak or move” (Bauby p. 4). His paralyzed body becomes a diving bell, pulling him heavily downward into murky waters, but his mind, unaffected by the stroke, his free to think and float and wander his vast imagination like a butterfly.Through his writing I am reminded of the power and beauty of language, something we all too often take for granted, and of the human need to communicate, to share what is in our heads and hearts with one another, no matter how difficult the task. For Bauby, who could only move his left eyelid, the desire to escape the “frightening truth” (p. 9) of his new existence lead him to relearn a system of speech so that he could move beyond the limiting realm of his existence and share his experience with others. This little book, full of terror, humor, sadness and euphoria, is testament to one man’s will to move beyond himself, to painstakingly blink one eyelid to write a book that will allow everyone to join him in his diving bell, “even if the diving bell takes [him] into unexplored territory” (p. 83). As his reader, it is a journey I gladly make with him.