Exploring "Locked-In Syndrome" Through the Case of Jean-Dominique Bauby

On 5 December 1995, Jean-Dominique Bauby suffered from an abrupt massive stroke that severed his brainstem. The stroke disconnected his brain from his spinal cord, and rendered the editor of the French Elle quadriplegic and mute. By communicating with his left eyelid, the only part of his body that was spared alongside with his mind, Bauby interlaced fragments of his story together to narrate what it was like to be living in an inanimate body. His memoir The Diving Bell and The Butterfly was published in French in 1997, two days before he died of pneumonia.

This essay explores how Bauby views and deals with his own concept of self and problems of embodiment brought forth by his illness, which is termed Locked-in Syndrome. Guided by The Diving Bell and The Butterfly and also works from anthropologists who have extensively investigated into the body-self concept, Bauby’s unique insight on how the self evolves, and the problems that arise during the period of being literally ‘locked-in', is extracted and analyzed.

Locked-in Syndrome, also termed pseudocoma, describes patients who are awake and conscious but due to their brainstem lesion, have no means of producing speech, limb or facial movements. People with Locked-in Syndrome remain comatose for some days or weeks, needing artificial respiration and then gradually wake up, but remain paralyzed and voiceless (Laureys 2005), and often have very little chance of recovery (Smith and Delargy 2005). Bauby and all the patients alike in fact remain mentally lucid and competent. They are able to remember and imagine, to perceive and process information, but they are devoid of all voluntary speech and bodily expressions.

Bauby’s narrative of Locked-in Syndrome as told in his memoir allows us to glimpse into the loneliness and powerlessness he experienced as he lived in the deadened body on a day-to-day basis. Such an intimate account gives us several anthropological insights into long standing questions about the body and self, namely: ‘how are you supposed to live, when your body can perceive but can no longer respond? How would people know inside the immobile body you are still alive?’ Indeed, his unique experience invites us to reflect on the anthropological concepts and relations of the body, self and embodiment.

Body, Self, Embodiment

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The human body has long been an important object of anthropological study. Foremost of all theories on body is the long-standing Cartesian dualism that separates the palpable body from the intangible mind (Scheper-Hughes and Lock 1987). However in this essay, I would like to bracket the philosophical debate on whether mind and body exist, or whether they are separate entities, and focus on how the complex and often disputed concepts of body and self may apply to Bauby. An extract we could employ to investigate this matter is on how he received a bath as a ‘locked-in’ person:

I can find it amusing, in my forty-fifth year, to be cleaned up and turned over, to have my bottom wiped and swaddled like a newborn’s. I even derive a guilty pleasure from this total lapse into infancy. But the next day, the same procedure seems to me unbearably sad and a tear rolls down through the lather a nurses’ aid spreads over my cheeks. And my weekly bath plunges me simultaneously into distress and happiness. The delectable moment when I sink into the tub is quickly followed by nostalgia for the protracted wallowings that were the joy of my previous life. Armed with a cup of tea or a Scotch, a good book or a pile of newspapers, I would soak for hours, manoeuvring the taps with my toes. Rarely do I feel my condition so cruelly as when I am recalling such pleasures. (p.24)

From above, we witness that the debilitating stroke now rendered him two different selves shaped by two different bodies - one before the stroke as a powerful figure in the glamorous heart of Paris who could freely manoeuvre the tap with his toes, one after the stroke as a paralysed man in a neurological hospital in Berck-sur-Mer in northern France who could only be bathed like a newborn. Appealing to Merleau-Ponty (1962), his body now may still serve as the starting point for his apprehension of the world, but it can no longer construct the world, as it is unresponsive to the will of the self.

We will look into the problem arises from the inability to use the body as an instrument in the latter section of the essay, but for certain, the phenomenological concept of body-self seems to have broken down in Bauby’s case. His body had broken down – and his self inevitably disembodied.

Embodiment can be interrupted as both a method and theoretical perspective of anthropology (Crosbas 1990). While Merleau-Ponty regarded embodiment as a symbolic way of transcending living through the body to the state of being-in-the-world, Bourdieu viewed embodiment as the practice of seeing the body as the locus of social practice (Becker 2004). In Bauby’s case, I propose that his embodiment comprised of these two elements. However, he was also simultaneously disembodied. Without the ability to interact with his surroundings – at least for the time when he was in coma, or just arose from it - he ceased to be in the world and could not engage in any social exchanges. His body still lied on the hospital bed, his eyes wandering around, but his thinking, buzzing self was displaced and absent from the world.

The only way he could now re-embody his existence, to express himself while trespassing the almost entirely paralysed and muted body, is through communicating by blinking his left eyelid to an elaborated alphabet system, indicating the letter he would like to use, and forming words, sentences, stories and a single narrative one blink at a time. He remained perceptive to all things around him, but his eye blinking now served as his only portal to the world, his only means of escaping from the confines of the metaphorical diving bell.

It is worth noting that unlike some persons who are paralysed gradually by illnesses, Bauby awoke to his unfortunate disembodiment overnight. This peculiarity resembles the fictional story of Gregor Samsa in Kafka’s Metamorphosis, in which Gregor finds himself transformed into a gigantic insect. Like Gregor, Bauby had no time for adaptation or rumination on their situation, and found himself plunged into a body-self that was disquietingly foreign and insufferable, into an abyss of challenges for maintaining selfhood.

Problems of Embodiment

Frank (1995:29), in his book The Wounded Storyteller, proposed four problems of embodiment faced by persons with chronic illness – issue of control, body-relatedness, other-relatedness and desire. Here, drawing from the words of Bauby, I intend to expose how Bauby viewed and dealt with his challenges posed by his extreme disability using this framework.

Problem of Control

While some persons with other chronic illness, such as diabetes, can exert a range of control response to their illness from acceptance of complete contingency on one end to pursuit of predictability on the other (Karas Montez and Kamer 2010), there were very few things that Bauby could do to substantially improve his mobility. When he first surfaced from his coma of twenty days, he found himself imprisoned in his own body of immobility and based on the bits and pieces he has overheard, he thought he would very quickly recovered movement and speech, with his mind occupied with thousands of projects. However, once he was deemed the official quadriplegic status, he gave up his ‘grandiose plans’ and turned his attention into seemingly small, mundane tasks that would involve regaining control of his now altered body. He said:

In fact it is in my respiratory passages that possible improvement is to be hoped for. In the long term, I can hope to eat more normally; that is, without the help of a gastric tube. Eventually, perhaps I could breathe naturally, without a respirator, and muster enough breath to make my vocal cords vibrate. But for now, I would be the happiest man if I could just swallow the overflow of saliva endlessly flooding my mouth. (p. 20)

To achieve this, he spent days practising sliding his tongue towards the palate in order to provoke a swallowing reaction (p.20) and with the help from the physiotherapist Brigitte he exercised his stiffened arms and legs. Yet, he lamented when he was asked to squeeze her hand as hard as he could, only to find that although he had the illusion that he was moving his fingers, nothing stirred (p.23). The extent of control he could exert over his illness and disablement is minimal, despite his continuous, painstaking yet futile effort, akin to the destiny of Sisyphus (Camus 1942, Zaner 2003). Also, he no longer had the capacity or agency to act for himself, even in the smallest of things. He has indeed, embodied one of the most profound forms of disability, and stuck in his own ‘hellish trap’ (p.19).

In addition, Bauby could no longer take control of the milieu he is in. Consider his description of an average Sunday:

Sunday. I dread Sunday, for if I am unlucky enough to have no visitors there will be nothing at all to break the dreary passage of the hours… I study my books, piled up on the windowsill to constitute a small library; a rather useless one, for today no one will come to read them to me… A very black fly settles on my nose. I waggle my head to unseat him. He digs in. Olympic wrestling was child’s play compared to his. Sunday. (p.107)

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On these dreadful Sundays, with no people around to help, he lacked the ability to exercise control, and to actualise his choices. Such capacity to ‘effortfully possiblise’ choices is the core form of human freedom, as described by Zaner (1981:167), and this lack of freedom has accentuated his limitations and also undermined his self-esteem. As he described:

Not only was I exiled, paralysed, mute, half deaf, deprived of all pleasures and reduced to a jelly-fish existence, but I was also horrible to behold. (p.33)

Murphy (1990:99), an anthropologist who suffered from quadriplegia as well, recognised that the loss of self-esteem is one of the most pervasive and most destructive psychological syndromes associated with disability. As depicted in the memoir, Bauby told of some fleeting moments of loss of ego, but he evidently did not let the dread take over. He coped with the sense of loss of control by letting his ‘mind takes flight like a butterfly’, indulging in his own imagination and recollection of things past.Continued on Next Page »