Bauby's memoir, The Diving Bell and the Butterfly, isn't a Gothic novel, like most of the ones we've discussed so far, but those who haven't yet read the book would probably expect it to be.
The book is actually the firsthand, non-fictional account of a man's life after a brain aneurysm has left him with what doctors refer to as "locked in" syndrome. In most cases of locked in syndrome, the patient is fully conscious and has the capacity to see, smell, touch, and taste everything. But, at the same time, the patient has almost no capacity to physically respond: the patient cannot speak or move. S/he is, essentially, "locked" inside the body.
Bauby lived several years in his locked in state, capable only of blinking his left eye. For most us, such a condition would seem unimaginable. It would seem almost obvious that death would be preferable.
And yet The Diving Bell and the Butterfly calls such knee-jerk assumptions into question. The memoir was dictated one letter at a time by Bauby blinking his left eye when his nurse named the letter he desired. Though the process must have been agonizingly slow, the result was the story of an existence that continued to be beautiful, even after the catastrophic injury.
Bauby describes how his mind took over once his body failed him; he would escape into extraordinary fantasy worlds that he would never have known in his busy life as an editor for Elle magazine in Paris. This life, he suggests, was even richer than the life he enjoyed with a fully functioning body because it was bound by nothing but his own capacity to imagine.
Not to say that it was all cotton candy and roses, of course. Bauby doesn't flinch when he describes the truly crappy aspects of his existence: not being able to hold his son, not being able to eat food when it smells so good, not being able to laugh as he used to, and, above all, having to fight every day to stay alive.
But Bauby did want to live, even in a body that those on the outside would call "unlivable," because he still found joy and value in it. And he was about as disabled as they come.
So as we read Bauby, we have to ask ourselves what his story tells us about what it means to be alive. Is living really about the body? Or is there something more? At what point do we say that our own lives or the lives of others aren't worth living? How can we know until we get there? And what does this mean for the way that we understand and react toward people with catastrophic illnesses or injuries? Is our responsibility to support them in living or to support them in dying?