The Diving Bell and the Butterfly: A Memoir of Life in Death by Jean=Dominque Bauby (Vintage, 1998).

When I first heard the story of Jean-Dominique Bauby, I was instantly captivated. An accomplished and cosmopolitan editor of a French fashion magazine struck down by a pontine stroke blinks out a memoir which is published only 2 days before his death. I was struck by the dichotomy of Bauby’s profound loss accompanied in the most unlikely fashion by unparalleled heights of artistry and humanity. The loss – virtually no volitional movement – is obvious and stark. The feats and accomplishments of locked-in patients are nothing less than Herculean given the challenges. As Bauby’s story demonstrates both the vulnerability and the promise of the nervous system,  I  chose to open my textbook on Medical Neurobiology with its re-telling.

Even as I marveled at Bauby’s resiliency, I found the outlines of his story more moving than the memoir itself, entitled The Diving Bell and the Butterfly in Rnglish and Le Scaphandre et le Papillon in French. There are three fairly trivial reasons that may explain my perception of a flattened affect in the memoir. First, I have only read (and re-read) Bauby’s book in the English translation and so may have missed subtleties of language. Second, I am not trained nor particularly talented at critiquing literary writing and may have just missed nuances of emotion. Third, I am certain that I fleshed out the emotion of the story using an active imagination. Just as Hitchcock used a paucity of information and visuals to encourage the very able imagination of the viewer, my imagination flooded in to fill the affective vacuum of the factual story. The detailed reality of a narrative has a hard time competing with imagination.

I speculated in my massively open online course, Understanding the Brain, that Bauby’s book appeared to reflect a relatively flattened affect and that this may have resulted from the failure of his body to embody emotion. Here is what I mean by that. Imagine that you feel sad but cannot sob or that you feel rage but cannot scream. Imagine that you cannot feel your body at all. You cannot feel your heart pounding any more than you can feel sublime calm in your body. Maybe emotions that occur without an accompanying appropriate feeling in the body are not as strong as they would be in a healthy person. Knowing that I was out of my expertise, I asked that any interested person with abilities in French literary criticism perform an analysis of Le Scaphandre et le Papillon.

Low and behold, I received a wonderful email from Myriam White-Le Goff, a maître de conférence (Lecturer) in medieval literature at a University in France. She offered to read Bauby’s book and analyze how Bauby expressed emotions. Ms White-Le Goff wrote back with an enlightening analysis of Bauby’s affect as portrayed in his book. Below is a full quote of her analysis. Approximate translations of the French are below each paragraph; translations were adapted by me from Google Translate.

Ms White-Le Goff writes:

In fact, the book, is, above all, very ironical and even, sometimes, cynical about Bauby’s life after the stroke. The cynical aspect is undermined by a lot of gratitude towards the people who are around him, and a kind of tenderness and understanding towards everyone and life as it goes. He acknowledges that his feelings are not well understood and even perceived by people surrounding him: “je peux pleurer assez discrètement. On dit alors que j’ai l’oeil qui coule” (p. 84). The pronoun “on” says a distance between him and the others and a kind of alienation, very discrete. Like “people say… one says… it is said…”, not involving a real person in the process.

je peux pleurer assez discrètement. On dit alors que j’ai l’oeil qui coule

I can cry quietly enough. It is said that I look runny

The impression that there is not much self-pity or even self-empathy is produced by the fact that Bauby explains that, at the beginning, he wasn’t sure himself about what he was feeling. He explains this in the passage of p. 22: “Ainsi un episode domestique comme la toilette peut m’inspirer des sentiments varies. Un jour, je trouve cocasse d’être, à quarante-quatre ans, nettoyé, retourné, torché et langé comme un nourrisson. En pleine régression infantile, j’y prends même un trouble plaisir. Le lendemain, tout cela me semble le comble du pathétique, et une larme roule dans la mousse à raser qu’un aide-soignant étale sur mes joues». It is said in a very precise and rational way but it conveys the difficulty of understanding oneself while overwhelmed by strong emotions. In some way, the only solution to speak about these feelings is to disconnect with them and analyze them from a distance. Bauby even considers the situation with a kind of humor.

Ainsi un episode domestique comme la toilette peut m’inspirer des sentiments varies. Un jour, je trouve cocasse d’être, à quarante-quatre ans, nettoyé, retourné, torché et langé comme un nourrisson. En pleine régression infantile, j’y prends même un trouble plaisir. Le lendemain, tout cela me semble le comble du pathétique, et une larme roule dans la mousse à raser qu’un aide-soignant étale sur mes joues

Thus a domestic episode such as the toilet can inspire in me varied sentiments. One day I found it funny, at forty -four years old, cleaned, turned, and swaddled like an infant. Full infantile regression, I even take pleasure in this disorder. The next day, all this seems to me the height of pathos, and a tear rolls into the shaving foam that a caregiver spread on my cheeks.

Bauby explicitly explains that he chose not to express the harshness of his feelings quite at the beginning of his book (p. 23, when he explains that he could express grief but that he prefers to concentrate on the continuing of life). It appears like a very conscious choice. This choice is very clear when he says that he feels a very strong emotion (“euphorie”, that can be felt either, when deeply happy or in a kind of absolute despair) and prefers to treat it all like a huge joke: “une étrange euphorie m’a alors envahi. Non seulement j’étais exile, paralysé, muet, à moitié sourd, privé de tous les plaisirs et réduit à une existence de méduse, mais en plus j’étais affreux à voir. J’ai été pris du fou rire nerveux que finit par provoquer une accumulation de catastrophes lorsque, après un dernier coup du sort, on décide de le traiter comme une plaisanterie » (p. 31). The rhythm of the sentences rises towards a sort of climax and produces a deceptive effect. Once more, Bauby suggests he was overwhelmed by his feelings and had to treat them as “external” to be able to write about his life.

une étrange euphorie m’a alors envahi. Non seulement j’étais exile, paralysé, muet, à moitié sourd, privé de tous les plaisirs et réduit à une existence de méduse, mais en plus j’étais affreux à voir. J’ai été pris du fou rire nerveux que finit par provoquer une accumulation de catastrophes lorsque, après un dernier coup du sort, on décide de le traiter comme une plaisanterie

a strange euphoria then invaded me. Not only was I exiled, paralyzed, mute, half deaf, deprived of all pleasures and reduced to the existence of a jellyfish, but I was also horrible to see. I was taken by nervous laughter that eventually caused an accumulation of disasters until, after a final twist of fate, it was decided to treat it as a joke

He explains that he gets very upset and agitated while trying to communicate with other people and not being able to (p. 47: “ils me bouleversent”). He expresses the need to feel profound emotions in order to remain alive: “Autant que de respire, j’ai besoin d’être ému, d’aimer et d’admirer. La letter d’un ami, un tableau de Balthus sur une carte postale, une page de Saint-Simon donnent un sens aux heures qui passent. Mais, pour rester sur le qui-vive et ne pas sombrer dans une résignation tiède, je garde une dose de fureur, de détestation, ni trop ni trop peu, comme la cocotte-minute a sa soupape de sécurité pour ne pas exploser » (p. 61). He finds comfort in beauty and meaningful emotions but also explains that he feels like on the verge of explosion sometimes, like overcome by rage. He often expresses his feeling in comparison with a wave, something that invades him quite suddenly: “une onde de chagrin m’a envahi. […] Tout d’un coup, j’en crève” (p. 77, when he wants to hold his child). His vocabulary them becomes more harsh or vulgar.

ils me bouleversent

they upset me

Autant que de respire, j’ai besoin d’être ému, d’aimer et d’admirer. La letter d’un ami, un tableau de Balthus sur une carte postale, une page de Saint-Simon donnent un sens aux heures qui passent. Mais, pour rester sur le qui-vive et ne pas sombrer dans une résignation tiède, je garde une dose de fureur, de détestation, ni trop ni trop peu, comme la cocotte-minute a sa soupape de sécurité pour ne pas exploser

As much as I need breathing, I need to be moved, to love and to admire. The letter from a friend, a Balthus painting on a postcard, a page of Saint- Simon gives meaning to the passing hours. But to stay on the alert and not to sink into a warm resignation, I keep a dose of fury, hatred, neither too much nor too little, just as the pressure cooker has a safety valve that keeps it from exploding

une onde de chagrin m’a envahi. […] Tout d’un coup, j’en crève

a wave of sadness came over me. […] Suddenly, I burst

Sometimes, he chooses silence or he leaves the end of a chapter open so that his reader can understand by himself the depth of his despair, like in the story of the picture sent to the hospital by his father, when the chapter just ends by “De son écriture charpentée et régulière, papa a simplement note : Berck-sur-Mer, avril 1963” (p. 51). It may seem very factual but it is indeed ironical as the picture seems premonitory, like a doom or the expression of some kind of fate.

 De son écriture charpentée et régulière, papa a simplement note : Berck-sur-Mer, avril 1963

In his framed and regular writing, Papa simply notes : Berck-sur-Mer, April 1963

Ms White-Le Goff’s elegant critique of Bauby’s wrting tells us that rather than not feeling full emotions, Bauby feels more emotion than his imprisoned body can tolerate. His diving bell existence places him perpetually in the realm of feeling too much. His ability to express himself does not match the depth of his feelings. This inability is so overwhelming that Bauby is forced to distance himself from his emotions. Thus, Bauby’s emotions are deeply felt but simultaneously battled against. When he is successful at keeping the emotions at bay, he can even express humor in quite a detached way.

I think that the take home message here is that embodying emotion not only facilitates our feelings but dissipates them. Without the safety valve of bodily expression, affect overwhelms. My sense is that both facilitation and dissipation of emotion by our bodies are critical to a rich life.