I have been thinking about this post for a long time. Like writing a loving tribute to a friend, writing about a piece of art that has impacted and enriched your life and thoughts can be daunting because of the desire to capture and relay the essence that makes it meaningful. Then I came to the realization that similar to a eulogy, a piece of music, a painting, or a film cannot be recaptured or retold because to do so would mean to deprive it of that essence—the very thing that makes it special. As you cannot recapture the totality of a person in a eulogy, meaningful art carries that same wonderful burden. I decided not to worry about bringing this film to justice in my writings. Instead, I want to share how it spoke to my humanity and open the door to its beauty by making more people aware of its existence. This is my thoughts on the film: “The Diving Bell and the Butterfly.”
The film by painter and director, Julian Schnabel, is based on the book by the same name written by Jean-Dominque Bauby. It is, as Bauby so aptly named it, a memoir about life in death. As the editor-in-chief of the French magazine Elle, Bauby experienced a stroke at the age of 44 leaving him completely paralyzed with the exception of the use of his left eye. Although paralyzed, Bauby was still able to feel the pain of his body and gravity of his disease writing:
After their night’s respite, my congested bronchial tubes once more begin their noisy rattle. My hands, lying curled on the yellow sheets, are hurting, although I can’t tell if they are burning hot or ice cold. To fight off stiffness, I instinctively stretch, my arms and legs moving only a fraction of an inch. It is often enough to bring relief to a painful limb.
With his mind intact, Bauby was diagnosed with condition called locked-in syndrome. Rare in nature, locked-in syndrome occurs when an individual is conscious and cognizant but cannot produce limb, speech, or facial movement. If communication does occur, it usually stems from inconsistent eye movements. To produce a piece of literary intimacy using one eye and a devised blinking system, as the alphabet was slowly and repeatedly read to him, is nothing short of amazing and a testament and elegy to the very act of being alive. It is in this context that Schnabel’s imagination takes flight creating a thing of rare beauty and power. Schnabel accomplishes something delicate and complex using his art, color, and originality without losing any of Bauby’s agency. Not only in voice and words, Schnabel transports you inside Bauby’s body by filming much of the film through Bauby’s one eye. If Bauby’s vision is obstructed then so is yours as a viewer. When doctors perform a coronary occlusion on Bauby’s right eye, Schnabel takes you to the wet eyelashes and pink veins of the inner eyelid closing to darkness—the very last of his sight through that eye. As Bauby realizes the power of his unencumbered mind and imagination, Schnabel provides a voyage to the butterfly emerging, passing through great lands, fabrics, textures and places that hold all of our imagination and dreams. It is that same place we all recognize that Schnabel taps into. For me, it is envisioning that dizzying starlight sky, seeing your breath come in and out of the air, and the feeling of lying close to someone that you love without touching—merely the splendor of having them near you.
At the same time, Schnabel allows you to exist in the gray. The film is a celebration of life; yet, a mourning of what was and the fear of what lies ahead. There is no hero or moral metaphor for experiencing pain and disability. There is just humanness. At one point, Bauby imagines himself rising out of his wheelchair and kissing an exquisite woman but Bauby doesn’t “recover.” Instead, Schnabel dives deep into places that are accessible and inaccessible to Bauby because of his stroke. An example of this is Bauby remembering the week of his stroke and shaving his father’s face. As is often the case with an aging parent, the child frequently takes over the responsibilities that the parent once held. The viewer observes this amazing act of love from child to parent and the next interaction between father and son is over the phone. Bauby’s blinks are translated to his father and the parent reemerges but this time relating to the loss that his son is experiencing. Yet, Schnabel doesn’t use Bauby’s body as thing of corporeal past, as an emblem, or to be viewed as “broken”. Unlike so many films that portray the disabled as being “supra spiritual” to overcome a thing of tragedy so that the viewer can admire Bauby for enduring his disability, Schnabel, instead, establishes human diversity in his film imbued with the protagonist’s humor, absurdities, lamentations, freedom, and wit, passion and talent as a writer. Memorized the night before and written with the urgencies of life, Schnabel captures the central plank of Bauby’s beautiful, unfolding, and lyrical words. Schnabel merges the narrative with the visual moving beyond autobiography by liberating Bauby’s words and placing them into visions all while demanding an arrested attentiveness of the viewer. It is words such as these that Schnabel paints onto film:
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 cocoon holds my whole body prisoner. My room emerges slowly from the gloom. I linger over every item: photos of loved ones, my children’s drawings, posters, the little tin cyclist sent by a friend the day before the Paris–Roubaix bike race, and the IV pole hanging over the bed where I have been confined these past six months, like a hermit crab dug into his rock… There is always the chance that we will stumble upon some unknown corner of the hospital, see new faces, or catch a whiff of cooking as we pass. It was in this way that I came upon the lighthouse, on one of my very first expeditions in my wheelchair, shortly after swimming up from the mists of coma. As we emerged from an elevator on the wrong floor, I saw it: tall, robust, and reassuring, in red and white stripes that reminded me of a rugby shirt. I placed myself at once under the protection of this brotherly symbol, guardian not just of sailors but of the sick—those castaways on the shores of loneliness.
Like shadows of light dancing on a wall, Schnabel delicately places each precious word into his film. It is there where I choose to leave you to explore.
Watch scenes from the film:
Listen to music from the film:
View Julian Schnabel’s Art: