The Diving Bell and the Butterfly

"I had never seen so many white coats in my little room. Nurses, orderlies, physical therapist, occupational therapist, psychologist, neurologist, interns, and even the department head - the whole hospital had turned out for the event. When they first burst in, pushing the conveyance ahead of them, I thought it meant that I was being ejected to make room for a new patient...I still could not imagine any connection between a wheelchair and me.

No one had yet given me an accurate picture of my situation, and I clung to the certainty...that I would quickly recover movement and speech...

...Two attendants seized me by the shoulders and feet, lifted me off the bed, and dumped me unceremoniously into the wheelchair. I had graduated from being a patient whose prognosis was uncertain to an official quadriplegic...My caretakers made me travel the length and breadth of the hospital floor, to make certain that the seated position did not trigger uncontrollable spasms, but I was too devastated by this brutal downgrading of my future hopes to take much notice...'You can handle the wheelchair,' said the occupational therapist, with a smile intended to make the remark sound like good news, whereas to my ears it had the ring of a life sentence. In one flash I saw the frightening truth. It was as blinding as an atomic explosion and keener than a guillotine blade."

I have read the arguments of others and I have often wondered what position I would take when faced with the issue of whether it is ethically right to keep a patient alive. Even now, I'm still not sure.

The above excerpt is from The Diving Bell and the Butterfly, a book written by Jean-Dominic Bauby. Well, not exactly written. Bauby had a massive stroke one day, which resulted in Locked-in Syndrome. After being in a coma for 20 days, he woke up and found that his only communication with the world was by blinking his left eye. With this method, he dictated the book one letter at a time.

Throughout the book, Bauby gives the reader mundane details about what it's like to be fully aware but unable to give any indication of that fact; whether it's the tv being turned off in the middle of a sports game, being left in an uncomfortable position for hours on end, or losing the ability to drop a witty retort to a statement, these are things that I don't think twice about in my everyday life. I can't imagine what it would be like to lose these, but these aren't even the "big" issues.

He is unable to smile at his children, unable to respond to his father during a telephone call, and unable to do more than sit and blink at people. These are the things that make me wonder if life is worth living like this.

I was hoping for a neat little paragraph to help me make my decision; I was disappointed. Bauby never once states "I wish I had died." He also never states "I'm glad I am alive." In one chapter, he describes a lighthouse that stands guard over the residents of the hospital, "guardian not just of sailors but of the sick - castaways on the shores of loneliness." In another chapter, he describes an afternoon on the beach with his children:

"'Want to play hangman?' asks Theophile, and I ache to tell him that I have enough on my plate playing quadriplegic. But my communication system disqualifies repartee...and I count this forced lack of humor one of the great drawbacks of my condition...

...But I can certainly play hangman...I guess a letter, then another, then stumble on the third. My heart is not in the game. Grief surges over me. His face is not two feet from mine, my son Theophile sits patiently waiting - and I, his father, have lost the simple right to ruffle his bristly hair, clasp his downy neck, hug his small, lithe, warm body tight against me. There are no words to express it. My condition is monstrous, iniquitous, revolting, horrible. Suddenly I can take no more. Tears well and my throat emits a hoarse rattle that startles Theophile. Don't be scared, little man. I love you."

Words like this make me wonder if he wishes for death or is glad to be alive. There are snippets of paragraphs that break my heart with the blunt despair that he feels, yet at the same time the love for those around him and the humor that still exists is more than enough proof that this shell of a person is still a person. So what do we do? Do we try to save the person who will be relegated to this life? Is it cruel to condemn someone to a life where they are at the mercy of their imagination? Is it wrong to put forth every medical effort for someone who will be confined to blinking as their only means of communication, where they will never again be able to smile or laugh or speak or move or hug or play a game with their child? Or do we do everything we can to keep someone alive - someone who still has the potential for a brilliant imagination, endless love for those around them, a scathing humor, and something to say about their lives?

Bauby never does give me a clear answer - except maybe when he wites that "I was brutally introduced to this vital piece of anatomy when a CVA took my brainstem out of action. In the past, it was known as a 'massive stroke,' and you simply died. But improved resuscitation techniques have now prolonged and refined the agony." Obviously this life is painful for him. But it is still life, and he is still a vital player to those he interacts with.

I just don't know. I hope I never have to deal with this. Unfortunately, I know that I will.