Weight For Us

There is a weight on everyone’s back. Life is hard. People can go about their days not knowing what they’re carrying around with them and eventually they’ll crack. For Jean-Dominique Bauby that weight was light until Friday December 8th, 1995. After picking up his son for a weekend together, Bauby had a stroke. Bauby’s massive stroke left him in a coma for 20 days and when he awoke he found himself suffering of Locked-In Syndrome, which doctors C.J. Borthwick and R. Crossley define as, “patients who become unable to speak or move as the result of certain rare cerebra-vascular accidents involving the brainstem” (387). Bauby describes his weight as a diving bell. Willie Howard writes, “Early diving bells were nothing more than inverted buckets that trapped air…the wooden diving bell built in 1691 by British astronomer Edmond Halley. Its breakthrough technology of the day included supplies of fresh air from barrels, a valve to release stale air, a bench seat, a barometer for a depth gauge and a helmet that let divers venture outside the bell” (Diving). In addition to his paralysis and muteness Bauby’s right eye had to be sewn shut because it was drying out. Bauby, with the help of his speech therapist began to communicate by blinking his one good eye. Bauby would blink at the letter when a specialized alphabet ordered from most common to least common was read to him. Letters formed words and words then formed sentences. Through these sentences his butterfly was able to take flight in the form of his imagination and he was able to communicate to the outside world. That painstaking communication gave us The Diving Bell and the Butterfly.

Bauby’s difficulty in communicating did not seem to hinder his ability to write beautiful prose about his life, both before and after his stroke. Bauby writes in the prologue, “Through the frayed curtain at my window, a wan glow announces the break of day. My heels hurt, my head weighs a ton, and something like a giant invisible diving bell holds my body prisoner” (Bauby 3). Bauby cannot move or talk and yet has the wherewithal to notice the sunlight coming in through his hospital room window. From the first line of the book it’s hard to miss the fact that Bauby sees the big picture. He’s not navel gazing nor saying “woe is me” but rather focusing on the beauty around him and paints a picture for the reader of what he is feeling. Like Bauby, everyone has a similar weight, some heavier than others but everyone has one. All people are locked-in to something. Their souls, are locked into their bodies. When reading Bauby’s memoir it is as if the reader is not merely reading his words but also his thoughts. Through this, the narration takes on all the conclusions the reader’s mind would come to if they were unable to communicate. The reader in a sense becomes the writer. Through Bauby’s honesty, symbolism and imagination he was not only able to write a memoir but a beautiful expression of how to carry around the weight of life but also what makes life worth living.

Jean-Dominique Bauby will be remembered for his memoir and the amazing experience that brought it about but he wasn’t always like that. As the fashion editor of Elle magazine Bauby lived the expected luxurious lifestyle full of travel, nice cars and beautiful women. He recalls a test drive of a new car, “Crossing the Bois de Boulogne, the BMW glides like a flying carpet, a private world of luxury and comfort” (Bauby 121). He was also a son to a father he loved very much. Bauby recalls a scene with his father, “The last time I saw my father, I shaved him…I wrap a big towel around his shriveled neck, daub thick lather over his face, and do my best not to irritate his skin” (Bauby 43). Through the small glimpses of his life prior to his stroke we see a man that lived both a life of luxury but was also sensitive enough to care for his elderly father. Bauby’s character did not change after suffering the stroke. He describes his relationship with the hospital staff, “I hated some of them, those who wrenched my arm while putting me in my wheelchair, or left me all night long with the TV on. For a few minutes or a few hours I would cheerfully have killed them. Later still, as time cooled my fiercest rages, I got to know them better. They carried out as best they could their delicate mission: to ease our burden a little when our crosses bruised our shoulders too painfully” (Bauby 110). Thomas Mallon writes, “The author cultivates strong feelings, especially anger, to keep his spirit from atrophying along with his limbs. But despite occasional sarcastic eruptions, the book’s tone is dominated by a sweet, even humorous, lyricism” (Blink). Throughout the book Bauby balances beautifully between extreme sarcasm and sensitivity, which allows the reader to both laugh with Bauby and his situation and also cry with how lonely and isolated he must have felt. Bauby’s horrible circumstances didn’t seem to change him. He was a high flying magazine executive and a sweet son prior to the accident and remained so through his use of humor and symbolism in his writing.

After waking from his coma, finding himself paralyzed and mute, Bauby could have easily given up. Who would have blamed him? It would almost be expected. He didn’t though, he chose to see beauty and use his imagination to remember life the way he wanted to and for this his memoir stays with us. Robert McCrum writes, “Most stroke victims, let alone Locked-In syndrome victims, are so overwhelmed by the four horsemen of apocalyptic illness depression, disability, fatigue and rage that even to compose a postcard involves a supreme effort of will” (Observer Review). Why did he do this? It was hard and an amazing act of determination and no one was holding a gun to his head. Bauby kept on living and wrote his memoir because he had a story to tell. A story that only he could tell. He writes, “My diving bell becomes less oppressive, and my mind takes flight like a butterfly. There is so much to do. You can wander off in space or in time, set out for Tierra del Fuego or for King Midas’s court” (Bauby 5). Bauby’s view of life is the exact opposite of what one would think. Rather than basking in self pity, Bauby doesn’t see enough time in the day for all the adventures in his mind.

Everyone on earth is locked in to something. Sex, alcohol, work, video games, name it and someone loves it. By these things people get distracted and trapped and avoid what mankind was created for, to tell a story. Everyone is like Jean-Dominique Bauby and has a choice to make. People can look at their seasons of life and see the limits, the constraints and the difficulties that they face or they can see more. Bauby chose to see more and writes, “My nostrils quiver with please as they inhale a robust odor-intoxicating to me but one that most mortals cannot abide. “Ooh!” says a disgusted voice behind me. “What a stench!” But I never tire of the smell of french fries” (Bauby 88). The smell of french fries means so much more to Bauby than to the average upright person because the smell is the closest thing he can come to tasting them. The Diving Bell and the Butterfly serves as a beautiful reminder for the reader to open their eyes and see the things they can so often ignore or get distracted from.

An unfortunate reality is that some people recognize the choice they face and choose to go they opposite direction. Some people choose dying over living. Eerily coincidental to Bauby is the story of a Vincent Humbert. A 22 year old French paraplegic who was left paralyzed, mute and blind (Son’s Wish). Humbert wrote a book entitled I Ask the Right to Die, in which he campaigned for the legalization of euthanasia in France. Humbert’s book, dictated in the exact same hospital as Bauby’s paints a stark contrast to the message of Bauby’s memoir. Charles Smith writes, “Mr. Humbert recounts with heartbreaking bitterness how his life as a healthy, careful young fireman ended when his car met an oncoming truck on a narrow country road. After enduring months of ebbing hope that he would recover any of his lost faculties he decided he wanted to die and with his mother began the campaign” (Son’s Wish). In no way should a choice like this be made by someone outside of the inner circle of the patient if not the patients themselves, but what if Bauby had given up, what if he chose to end his life before it came to an end naturally? His memoir would never have been written, millions of people would not have been touched by his story and people would not be inspired by life. Deathbeds are coming for everyone. On those deathbeds people look back on their lives and either have great joy or great remorse. Bauby, although his book is filled with so much hope, was not immune to remorse. He recounts a lost bet at a horse race track:

The memory of that event has only just come back to me, now doubly painful: regret for a vanished past and, above all, remorse for lost opportunities. Mithra-Grandchamp is the women we were unable to love, the chances we failed to seize, the moments of happiness we allowed to drift away. Today it seems to me that my whole life was nothing but a string of those small near misses: a race whose result we know beforehand but in which we fail to bet on the winner” (Bauby 94).

Bauby had a great life, one full of money, fame and everything that life has to offer and yet he still had remorse.

It can be said that everything that happens, happens for a reason. Bauby had a stroke for a reason. He was meant to inspire people to live their lives, to open their eyes and to see all that fills life around them and to encourage people to take advantage of the freedom they have in this life. Everyone wakes up in the morning for a reason. A choice has to be made: either drown with the diving bell of life or take flight with the butterfly. Distractions and stress can creep up from around the corner at the drop of a hat. We should be a people that persevere and endure and continually look at the big picture and how today fits into it. Theologian John Piper expounds on the little moments in life where we get a new perspective on life:

At these moments, when the trifling fog of life clears and I see what I am really on earth to do, I groan over the petty pursuits that waste so many lives – and so much of mine. Just think of the magnitude of sports – a whole section of the daily newspaper. But there is no section on God. Think of the endless resources for making your home and garden more comfortable and impressive. Think of how many tens of thousands of dollars you can spend to buy more car than you need. Think of the time and energy and conversation that go into entertainment and leisure and what we call “fun stuff.” And add to that now the computer that artificially recreates the very games that are already so distant from reality; it is like a multi-layered dreamworld of insignificance expanding into nothingness” (Piper 125).

If life was meant to be wasted, it wouldn’t have happened. Please don’t waste yours.