Written by Max Muller

The movie The Diving Bell and the Butterfly tells the story of Jean-Dominique Bauby, the former French editor-in-chief of Elle fashion magazine. At the age of 43, he suffered a massive stroke. After having spent twenty days in a coma, he woke up to find himself a hostage of his own body. Although his mental faculties remained intact, he was almost entirely paralyzed. As a sufferer of locked-in syndrome, he could only move his eyelids. The near-complete paralysis was irreversible.

What fascinates me about people who become severely handicapped later in life is the level of mental strength they possess that enables them to carry on with their lives. I am especially impressed when patients manage to overcome this significant hurdle and achieve something great despite their corporeal limitations.

In this piece, I aim to come to an understanding of the psychological process that shaped Bauby’s perseverance.

The Misery of Immobility

After discovering his inhibited state in a remote hospital in Berck-sur-Mere, Bauby understandably became deeply distressed. When the doctors told him about his rare condition and the modern techniques that had been developed to extend his life, he was hardly impressed.

“This is life? Do you call this life?” a voice in his head exclaimed.

Henriette, his speech therapist, tried a new communication system with him. As she read out the letters in the order of the frequency of their use in French, he blinked when she reached the appropriate letter. To her horror, the first sentence Bauby constructed was, “Je veux mourir” (“I want to die”).

The misery was amplified when his physiotherapist Marie used a mirror during their speech lessons. As is revealed in the movie later on, Bauby used to be quite the womanizer and had good looks. Upon seeing his stiffened face, he was mortified.

Living with Regrets

Later, the source of Bauby’s sadness transferred from a preoccupation with his own disability to the regrets caused by his inability to redeem his past mistakes. He was especially saddened by his past mistreatment of his ex-girlfriend Celine, who was also the mother of his three children. Bauby left her and their offspring for another woman. When Celine and his children finally visited him in the hospital, he came to realize that, in his new state, he could not make up for the neglectful way he acted towards them in the past.

Something similar happened when a person called Pierre Roussin visited him. Bauby once gave up his seat on a flight to Hong Kong to him. By a twist of fate, the plane ended up being hijacked and Roussin was held hostage in Beirut for over four years. After his release, Bauby never contacted him. Meeting Roussin again brought back those memories, and guilt.

Photo by Jimmy Chan

Other Prisoners

Although Bauby never contacted Roussin, the man was compassionate enough to give Bauby encouragement in the hospital. Roussin compared his former, precarious situation to being in jail, or even in a tomb. Like Bauby, he too was often desperate, angry, and depressed. In order to remain sane, he recited the classes of grand cru wines he used to enjoy back in France. Roussin likens his hostage situation in the past with Bauby’s predicament in the present, and offers some wise words of advice: “Cling to your own humanity and you will survive.”

Roussin was not the only one to try revitalizing Bauby by comparison. Bauby’s father aimed to enhearten him also.

“We are both in the in the same boat,” he revealed to his son during a telephone call. “I’m trapped in this apartment, and cannot go up or down the stairs…we both have locked-in syndrome.”

Those words of encouragement from both Roussin and his father offer a way for Bauby to connect with others, even though they don’t suffer from the same affliction.

As the Dutch saying goes: “Shared sorrow is half sorrow.”

Bauby furthermore interprets his own condition as being stuck in a small diving bell (a device used to explore the depths of the sea). When imagery of this device is shown in the movie, it is always accompanied by the name “Noirtier de Villefort.”

Notiertier de Villefort was a character in Alexandre Dumas’ 1844 book “The Count of Monte Cristo” who also suffered from the condition we now call locked-in syndrome. Bauby had started to re-read the book a week before his stroke.

The Way Forward  

The fact that there were people close to him who were willing to spend their time and energy to improve Bauby’s state of mind gave him an important mental boost.

However, the efforts of other people alone were not sufficient to transform Bauby’s outlook on life. An internal leap of perspective was necessary, too. That shift occurred when Bauby recognized the facilities he had retained, and to what extent those capabilities could enrich his life. The change of perspective is marked by one of the observations the voice in his head narrates:

“I have decided not to pity myself any longer. Two parts of myself have not been paralyzed: my imagination and my memory. Imagination and memory are what I must use to escape my diving bell. I have realized I can imagine anything, anyone, anywhere.”

His insight – that he can harness his remaining facilities to take a peek from the window in his prison – is empowering to Bauby. He could imagine himself visiting the women he loves, make his childhood dreams come to life, and realize his ambitions as an adult.

It is probably no coincidence that these memories and fantasies usually heavily involve his sense of touch – after all, the syndrome also bars him from feeling anything with his skin. Thus, he imagines stroking his hands through his children’s hair, devouring oysters, and kissing beautiful women. These imaginary sensations allow Bauby to remember what it is like to be entangled in the midst of the world as a sensing body.

The decision not to pity himself any longer was materialized when he allowed his children to visit him. His inner voice reasoned, “Even a rough sketch, a shadow, a tiny fragment of a dad is still a dad.”

So on the one hand, he reaches out to his children by being physically there for them. On the other hand, he retains his connection to his family via his heightened sense of imagination and his memories.

Clinging to One’s Humanity

The power of the capabilities he had re-discovered and his past experiences as the editor-in-chief of Elle came in handy particularly when he was reminded of a contract he had signed with his publisher. The publisher sent a woman by the name of Claude Mendibil to transcribe his thoughs. The recording process culminated in the publication of the autobiography on which the movie is based.

Although this process was long and arduous, it reinvigorated Bauby. He was able to harness the full extent of his memory, imagination, and his writing capabilities. Furthermore, it allowed him to look deeply into himself and contemplate his past actions, something he perhaps did not have the time for, or neglected to do, when he was not yet paralyzed. Thus he was able to turn his syndrome around from what he initially perceived as a stumbling block into a strength. Finally, he dutifully followed Roussin’s advice. The writing process allowed him to re-conceive himself as a human being with all its flaws and strengths.

To conclude, the movie reveals the intricate connections between the state of the body and the state of the mind. Though, initially, it seemed obvious that it was Bauby’s body that was the main source of inhibition in his paralyzed state, it turned out that his mentality was a formidable stumbling block for the achievement of happiness and success as well. By overcoming this obstacle, he was able to write a now classic book and reconnect with those he held dear.