ABSTRACT
Jean-Dominique Bauby, author of The Diving Bell and the Butterfly, was the first to write on living with locked-in syndrome (LIS). A rare neurological condition, LIS leaves the affected cognitively intact but physically paralyzed. Victims are literally “locked” into their unresponsive bodies, retaining only the ability to move their eyes. By utilizing this last shred of mobility, some locked-in patients are able to communicate through systems of blinks. Bauby’s memoir highlights humans’ heavy reliance on movement to communicate and maintain our personhood. Though Bauby’s words granted LIS patients a voice, they could not grant them movement. I sought to physicalize Bauby’s words through dance. I structured, cast, and choreographed a piece based on an in-depth literary analysis of The Diving Bell and the Butterfly. The resulting work, The Chair in Room 119, made use of the memoir’s metaphors, imagery, and dramatic arc to inspire kinesthetic empathy in its audiences.
INTRODUCTION
Dance offers a unique entry point into understanding life with movement disorders. In watching dance, audience members engage in kinesthetic empathy; they are able to “feel” the dancers’ movements resonate within themselves. They connect to the dance at a fundamentally human level via routes ingrained in their own physiologies, their own psychologies. In this way, dance serves as a form of communication distinct from the verbal or written word.
The concept of kinesthetic empathy is rooted in neuroscience. Neuroscientist Christian Keysers described how the sensation manifests on a physiological level in his book, The Empathetic Brain. “Our brain automatically activates regions normally involved in our own actions, sensations and emotions, when we see what happens to other people,” he explains. “Our brains mirror the states of other people.” Specialized brain cells known as “mirror neurons” are responsible for this activity. For example, when you see someone raise their arm, your mirror neurons fire as if you were raising your arm as well. When you watch someone dance, they fire as if you dancing yourself. Keysers was on the team that first discovered mirror neurons and proclaimed that, “Neuroscience has discovered empathy (Keysers).”
People with movement disorders do not inspire kinesthetic empathy as healthy individuals do. Their movement is absent or “abnormal” and therefore provokes unusual responses from observers’ mirror neurons. They may experience social discrimination and exclusion as a result of this differential brain activation. Reduced activation of mirror neurons is associated with a lapse in social cognition known as “dehumanized perception.” Social cognition is the ability to “consider someone’s mind” and “recogniz[e] the other as a human being subject to moral treatment.” Dehumanized perception is the failure of social cognition. This cognitive bias stems from a lack of empathy and elicits negative social emotions, such as pity and disgust. Disabled people, including those with movement disorders, are often subject to dehumanized perception (Harris and Fiske 1-2).
My research aims to counteract this trend. I theorize that dance has the power to inspire kinesthetic empathy for people with movement disorders. Audiences can find new connection to patients’ personal anecdotes when they are translated into choreography. Jean-Dominique Bauby’s famous account of locked-in syndrome, The Diving Bell and the Butterfly, serves as my case study.
In December 1995, at the age of 43, Jean-Dominique Bauby suffered a massive stroke. After twenty days in a coma and several weeks of semiconsciousness, he awoke in Room 119 of the Naval Hospital at Berck-sur-Mer. He found himself completely unable to speak or move, with the exception of his eyes (Mallon). Realizing he had finally regained consciousness, his attending neurologist relayed his diagnosis. Bauby had contracted the rare locked-in syndrome (LIS).
Before his stroke, Bauby “had never even heard of the brain stem,” but he soon became all too familiar (Bauby 4). The pathology of LIS centers around a small brainstem structure known as the pons. The pons regulates many vital functions, including sleep, muscle tone, arousal, attention, and cardiac and respiratory reflexes. It also projects to the cerebellum, a structure that coordinates incoming sensory information from the body and outgoing motor commands from higher brain structures (Meyer 66-67).
In LIS, the pons becomes damaged, often due to the resultant tissue loss following a stroke. Pontine lesions cut off higher brain areas from the rest of the body and interrupt descending motor commands (Laureys "Locked In”). Commands from cranial nerves are also interrupted, including those responsible for facial sensation, biting, chewing, swallowing, facial expression, aspects of hearing, and horizontal eye movements (Healthline). This deefferentiation results in the clinical picture of LIS: patients are left cognitively intact but paralyzed, excepting vertical eye movements.
Bauby’s right eye was occluded when he ran the risk of developing an ulcerated cornea (Bauby 54). With his unfettered consciousness “locked” into his unresponsive body, Bauby’s left eye served as the “only window to [his] cell” (53). He wrote his “Memoir of Life in Death” in the throes of this afflicted state. Speech-language pathologist Henriette Durand equipped him with a method of communication while ghostwriter Claude Mendibil dictated his words. Mendibil would recite the French alphabet aloud, listing the letters according to their frequency of use. Bauby blinked to select a letter or signal the end of a word. Slowly, laboriously, letters became words became sentences became stories, and so The Diving Bell and the Butterfly was written.
Bauby’s memoir describes the degradation of identity that accompanied his loss of motor function and means to communicate. While he was considered a “complete vegetable” by the society surrounding him, his reliance on others for basic survival shattered his self-worth (Bauby 82). In his darkest moments, Bauby longed for death. From the depths of despair, Bauby found solace in the vitality of his mind and the support of his loved ones. Thus his hope and humanity were reinstated.
METHODOLOGY
An in-depth literary analysis of Jean-Dominique Bauby’s The Diving Bell and the Butterfly laid the foundation for my project. I identified the narrative’s defining elements and made them central to my choreographic work. Chief among these elements were character development, point of view, figurative language, imagery, motif, setting, symbolism, tone, theme, plot and dramatic arc.
As Bauby utilized literary devices in his memoir, so I utilized synonymous choreographic devices in my piece. In dance, Bauby’s story was manifested through choices in casting, sound design, costume, lighting, props, and first and foremost, movement invention. Like Bauby’s work, my piece made heavy use of imagery, motif, and metaphor.
RESULTS
My research culminated in a piece entitled, The Chair in Room 119. The work followed the basic narrative of The Diving Bell and the Butterfly, charting Bauby’s dark submersion into himself and eventual ascent back into the light. The main goal of the piece was to highlight this dramatic arc and the work’s major themes.
Quotations and images from Bauby’s memoir guided my choreographic exploration of his story. The quotes generally fell into three categories: Bauby’s intrapersonal reflections, observations on his interpersonal relationships, and descriptions of the physical sensations associated with locked-in. In naming these parameters, I realized that I valued the first-person nature of Bauby’s account. In my piece, a featured soloist supported this value and a large corps provided larger context.
Having established the importance of Bauby’s personal story, I built my piece around a loose narrative structure. The structure allowed me to assess the efficacy of each choreographic decision I made. A decision was effective if it served to clarify the greater narrative. If it contradicted or failed to reinforce that narrative, it was called into question.
My piece’s narrative was based on a bare-bones account of The Diving Bell and the Butterfly, referencing its major plot points and dramatic arc. The piece took places in four parts, following the rise, climax, fall, and resolution of the story. In the first section, the soloist’s (“Bauby’s”) affliction is introduced. The second section is based around ideas of immobility, isolation, and dehumanization – the darkest aspects of LIS. Tension climaxes in the third section representing Bauby’s deepest moments of despair and the piece ends on an upward shift in tone, reflecting Bauby’s regained hope and reestablished humanity. A thematic shift from extreme isolation to compassionate connection supplied the piece’s through-line.
My soloist served to anchor The Chair in Room 119 thematically in each of its four sections. The quality of her choreography was inspired by Bauby’s outward limitations and inner emotional turmoil. The idea of Bauby as a “pressure cooker” was a constant image (Bauby 55). The choreography showcased extreme polarities of movement dynamics, with moments of explosiveness contrasted with more delicate, sustained movement.
The major themes of The Diving Bell and the Butterfly could not be depicted by a soloist alone. A corps of six dancers served as the “societal context” framing Bauby’s condition. I leaned toward a balletic aesthetic for the corps choreography, thinking this would most effectively juxtapose that of my soloist. The choreography utilized traditional ballet lines, sweeping port de bras, and a soft, swirling, airy quality, but with what I’ll call a modernistic “quirk.” This stylization included ample movement in and out of the floor, shifts out of verticality, partnering between female corps members, and the occasional sickled foot. This aesthetic was largely inspired Bauby’s witty writing style, but it was also born of my personal movement preferences.
The corps’ relation to my soloist was also a metaphor for Bauby’s changing relationship to society throughout his affliction. In the first half of the piece, coinciding with the rising action of the plot, the group engaged minimally with the soloist. However, as the dance progressed, the corps’ formations surrounded and isolated her, emphasizing her separation. In the second half, the falling action, they redirected their movement towards and in support of the soloist. The movement en masse was designed to resemble a tumultuous sea, crashing waves, and ripples across water, inspired by Bauby’s vivid imagery.
Water-related imagery was predominant throughout Bauby’s memoir. Berck-sur-Mer is on the French Chanel coast, and therefore the beach and sea became a constant backdrop. The setting took on many functions, serving to comfort, incite painful nostalgia, or inspire reflection. In Bauby’s mind, the nearby lighthouse was “guardian not just of sailors but of the sick-those castaways on the shores of loneliness (Bauby 29).” Of course, Bauby’s most salient image was referenced in his book’s title. Bauby described his frozen body as a diving bell - a rigid, pressurized container submerged in deep water. The metaphor captured the physical and emotional sensations of LIS, eliciting feelings of isolation, weightedness, rigidity, and constant pressure.
The corps also underscored the concept of common humanity permeating Bauby’s story. The costume design for my piece derived from this theme. Everyone in the piece wore the same thing, underscoring the commonality between their “characters.” The costumes also harkened back to Bauby’s water imagery, swirling and crumpling as the dancers performed. Grey socks and shorts were worn for practicality’s sake, but their look also served to reference the book’s stark healthcare setting.
Tracing the dramatic arc of Bauby’s account, the opening of my piece introduced Bauby’s situation in its simplest terms. With the aid of two corps members, my soloist “floated” to her place atop a chair at centerstage. A chapter in Bauby’s memoir entitled, “The Wheelchair,” described the moment he realized the “frightening truth” about his condition, the truth “as blinding as an atomic explosion and keener than a guillotine blade (Bauby 9).” My piece opened in reference to this moment, demarcating the start of Bauby’s downward spiral into desperation. The chair was a constant presence throughout the piece, driving home the permanence and immobility of Bauby’s condition.
My piece’s title, The Chair in Room 119, implicated this literal chair as well as a metaphorical one. With the onset of his condition, Bauby went from being acknowledged as a human being to little more than furniture adorning the room. “The Chair” could therefore reference either Bauby’s wheelchair, representing his condition, or Bauby himself.
Sound design provided temporal boundaries for each “chapter” of Bauby’s narrative. In the opening section, sounds reminiscent of being submerged in the ocean fill the space. The sounds referenced Bauby’s diving bell metaphor and introduced water as a recurrent motif, much as in The Diving Bell and the Butterfly.
From her place atop the chair, the soloist reached into space with arms raised above her head as if floating in water. Her two attending corps members circled below, performing a stylized version of the childhood dance “Head, Shoulders, Knees, and Toes.” This movement was in subtle reference to ascending sensory and descending motor projections in the body. This motion then shifted to a repetitive tapping of just the head, foreshadowing the interruption of these signals in locked-in syndrome. The soloist’s arm movements became increasingly violent, growing faster and faster before braking to a sudden halt. Her entire body stiffened and her hand flew to the base of her skull, signifying the onset of LIS. This hand placement recurred as a motif throughout the piece in reference to the syndrome’s pathology - the choreographic equivalent of a bilateral pontine lesion.
Thus afflicted, the soloist fell limp into the arms of one corps member. This corps member then arranged her awkwardly in the chair and remained to attend her, representing those who cared for Bauby in his illness. In the piece’s following section, she physically pulled the soloist into a “proper” seated position only to have the soloist snap back into contortion. Likened to one of Bauby’s physical therapists repeating an endless routine, this corps member then repeated the action despite its transient results. The second corps member retreats, representing those who severed their attachments to Bauby when confronted with his disturbing state.
The introductory section was followed by what I call the “near misses” section. Even in the arguably exceptional care of Berck’s Naval Hospital, Bauby was often left alone with nothing but his thoughts (Bauby 4). His days were filled with endless day dreaming, remembrance, and reflection. He would dwell on “women [he was] unable to love, the chances [he] failed to seize, the moments of happiness [he] allowed to drift away.” He wrote that it sometimes seemed that his “whole life was nothing but a string of those small near misses: a race whose result [he knew] beforehand but in which [he failed] to bet on the winner (94).”
In this movement, my soloist, Jacquelyn Pritz, sat contorted and still in her chair as the corps danced around her. Throughout my research, I circled back to ideas of juxtaposed polarities. Paralysis can be most fully appreciated in the context of movement. Isolation may be most keenly felt in a crowd. I brought these ideas to the stage by placing my immobile soloist on an island amid a sea of moving people. The corps’ affect was pleasant and their movement swirling in this section, removing them even further from Pritz’s immobile state.
The nostalgic 1940’s jazz tune “La Mer,” performed by Charles Trenet, played in the background. It underscored Bauby’s water imagery and the idea of reflecting on the past. A parallel existed in Diving Bell in that Bauby was cared for at the Naval Hospital at Berck-sur-Mer. He’d stare out over the sea and take outings on the beach, lost in deep reflection. The choreography in this section was largely inspired by the sea - waves crashing, eddies swirling, buoys bobbing, the tide rushing in and out. Like Bauby, my soloist watched this motion from her place in the chair. The corps never referenced the soloist directly, but their formations accommodated her presence as one would a set piece. Along with the music, the formations were almost reminiscent of Esther Williams era synchronized swimming.
The music and lighting intensified as “La Mer” crescendoed and Bauby’s dramatic arc climaxes. The dreamlike “near misses” movement was interrupted by the beep of a flatlining heart rate monitor. Bright white light spotlighted the soloist, reminiscent of harsh fluorescents lighting a hospital room. The corps retreated, forming an architectural backdrop in the shadows behind her. Their backs were to her, supporting the illusion that the soloist was in a room by herself. As haggard breaths began to sound over the heart rate monitor, the soloist’s own breath grew deeper, becoming more visible within her body. Finally, with a forceful exhale serving as impetus, the soloist rose from her chair and began a solo.
The breathing gaves way to an audio excerpt from Julian Schnabel’s film adaptation of Bauby’s memoir, Le Scaphandre et le Papillon. The excerpt was from a scene in which Bauby and his speech-language pathologist, Henriette Durand, were practicing communicating through a system of blinks. Durand asked Bauby what he wanted and, working her way through the frequency-ordered alphabet, learned he wanted “mourir.” He wanted to die (Le Scaphandre).
This moment was Bauby’s darkest. In this pivotal section, my soloist embodied Bauby’s pent-up desperation and provided it an avenue for expulsion. Her movement was a delicate balance between rigidity and release, virtuosity and contortion. Coming back to the idea of Bauby as a “pressure cooker,” the solo was a series of pressured bursts of movement (Bauby 55). Contrasting the corps’ “quirky ballet,” my soloist performed “broken ballet.” Familiar steps were still recognizable, but set off balance, turned parallel, or performed with bent limbs. The use of momentum was abrupt and vigorous, in time with Durand’s recitation of the alphabet. She moved at the polarities of what is possible in movement, with either extreme restriction or wild abandon. At the end of each burst of intense movement, she placed a closed fist in front of her eye. This was effectively a “blink” and coincided with Bauby selecting a letter in the scene. The excerpt concluded with the revelation of the word “mourir” and Pritz reaching skyward from a broken position on the floor.
Next, the soft piano of Paul Cantelon’s “Theme for the Diving Bell and the Butterfly” ushered in the resolution of the piece’s dramatic arc. I called this movement the “butterfly” section. Bauby employed the image of a butterfly as the antithesis to his diving bell. The image signified Bauby finding escape in the compassion of others and the verve of his own mind. “My diving bell becomes less oppressive, and my mind takes flight like a butterfly. There is so much to do (Bauby 5).”
In the “butterfly” section, the corps broke their cold formation and gathered by the soloist. Together, they performed a gesture sequence in unison. The soft movement quality dramatically contrasted that of the preceding solo. The moment was inspired by Bauby’s friends, family, and caretakers learning his alphabet system in order to reconnect with him. In a broader sense, it represented Bauby beginning to tell his story to the world at large.
There was still struggle despite the triumph, however. Bauby’s story did not resolve with a “happily ever after.” His standing in society remained degraded despite his support from loved ones. Pritz personified this, continually rising from her chair only to be buckled back down by gravity. The two corps members featured in the beginning of the piece partnered her, physically pulling her from the chair and supporting her weight throughout the choreography. They were there to catch, lift, and turn the soloist as she tumbled haphazardly through space. There was a reference to the “straightening out” sequence from the opening, except this time both corps members helped to pull Pritz out of positions of extreme contortion.
The “butterfly” section built into a flurry of activity in juxtaposition to the relative stillness of all earlier sections. The corps’ choreography alluded once more to the sea with a canonized falling sequence across the stage. They continued to support the soloist as she threw herself through space. Her choreography embodied a sense of free-fall, far flung from her rigidity at the top of the work. The change was analogous to Bauby’s personal revelation and development over the course of his affliction.
As The Chair in Room 119 concluded, the initial ocean sounds returned and the corps formed a circle around Pritz. Passing her chair between them, their actions suggested a parallel between how Bauby’s chair supported him physically and his friends supported him emotionally. From within their protective circle, Pritz repeated soft, reaching arm motions, still seeking solace from her “diving bell.” The corps placed the chair down and the soloist collapsed into it, succumbing to gravity one last time. The corps immediately helped her to standing, physically supporting her as she resumed reaching. The corps exited the stage one by one, leaving the soloist alone on the chair. She descended and, as Bauby differentiated his identity from his disease, pushed herself from the chair to stand solidly on two feet. She walked into blackness, her arms reaching out like butterfly wings.
CONCLUSION
In The Diving Bell and the Butterfly, Bauby described living in a state of infant-like dependence and constant physical discomfort. He recounted the frustration of screaming internally with no one to hear, and of being unable to hold his children. He related the humbling coldness shown to him by those who had formerly respected his humanity. Despite his depressing circumstances and gutting loss of personal identity, Bauby found the light in life once again. The Chair in Room 119 physicalized Bauby’s moving narrative and brought it to the stage as a unique dance performance.
In receiving audience feedback, I found that Bauby’s imagery and dramatic arc were seen clearly in the performances. People were drawn into the work via its movement vocabulary, gesture motifs, and sound design. Cantelon’s “Theme for the Diving Bell and the Butterfly” resonated in people’s minds and planted simultaneous impressions of beauty and sadness. The pairing of water sounds and flowing choreography conjured images of the sea. The heart monitor acted to simulate a hospital setting, cluing people into the theme of debilitating illness. Many were curious about the specific meaning behind the “pons” and “eye” gestures, as their deliberate use implied their importance.
Most significantly, audiences accessed Bauby’s narrative and major themes via the dynamism of the soloist’s choreography. In the introductory section, her transition from violent thrashing to eerie stillness gave the audience a sense of her grave condition. Her unflinching presence drew the audience’s attention in the “near misses” section, maintaining her centrality despite her lack of choreography. The contrasting qualities of her solo related a struggle against some unseen force and the intensity of the struggle was accentuated by the apparent exhaustion that followed. Audiences were swept away in the final movement, sensing the soloist’s full release of weight and her softened movement quality. Following the arc of the piece, they were able to move from a feeling of tension and sadness to one of release and hope.
At the onset of this project, I proposed that dance could inspire kinesthetic empathy for those with movement disorders. I suggested that choreography could relate patients’ personal experiences in ways beyond the capability of words. My case study, The Chair in Room 119, met and surpassed these aspirations. Bauby’s use of literary devices guided my choreographic design, and the integral elements of his memoir became equally integral to my piece. The movement led audiences through Bauby’s story, leaving them with an impression of living with LIS. Paradoxically, they felt kinesthetic empathy for one without movement. In this way, The Chair in Room 119 lent Bauby the voice no alphabet could give him.
ACKNOWLEDGEMENTS
Thank you to Jean-Dominique Bauby, whose book has made my shelf of favorites and whose words inspire me every day. Thank you to Katie De Genaro, Jennifer Klammer, Jacquelyn Pritz, Ashlyn Rust, Christine Schmidt, Ellison Swainhart, and Cristen Thomas for your commitment to The Chair in Room 119, willingness to experiment, and readiness to laugh. Thank you to Breena Cocco for your emotional and creative support and for being the best friend and roommate I could ask for. Thank you to Elizabeth Johnson for offering me honest feedback and your vote of confidence throughout this process. Thank you to Ric Rose for coordinating BFA Showcase: Mind Your Step and serving as our official “dance department dad.” Thank you to Dr. Paul Lennard and Dr. Jaffar Khan of theEmory MD-SEE program for first exposing me to The Diving Bell and the Butterfly at one of our fabulous movie nights. Finally, thank you to Mom and Dad, who support me in every respect and have always taught me by example.
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