Editorial: A Butterfly Locked-In A Diving-Bell – Is Freedom Possible? (original) (raw)
Related papers
The Diving Bell and the Butterfly: A Film Review
Pastoral Psychology, 2008
invites us-perhaps throws us is more apt-into a world none of us ever want to experience: in total paralysis, but with a mind that is alert, active, and at first baffled by its predicament. The film begins with blurred images, glimpses of light, faint voices, and a confusing mixture of sights and sounds. The point of view is stationary, except for eye movements. We gradually learn that we are seeing a hospital room, nurses, doctors, and orderlies. These people move closer to the person through whose eyes we are seeing. They address him as Jean-Dominique Bauby and inform him that he has experienced a catastrophic stoke and has been in a coma for three weeks. Jean-Dominique (brilliantly portrayed by Mathieu Amalric) gradually becomes aware that he cannot speak. We hear his thoughts through voiceover, but he realizes that no one else can hear him. A doctor comes close to his face and speaks directly to him. Jean-Dominique is told to blink if he can understand what is being said. After some effort, we see the screen go black for a second. He blinks. For what seems like a very long period of time-perhaps the first third of the film-we see everything through Jean-Dominique's eye. Watching this film, I felt the world closing in on me. I rarely feel claustrophobic, but I began to feel a shortness of breath, an emerging sense of desperation, and even terror as I watched with both of my eyes. Six years ago I suffered a stroke, and thus, I could not shake the feeling that this man's predicament could have been mine. I could have been trapped in what the film's doctor called "the locked-in-syndrome." As a profound sense of fear and dread came over me, I wanted to bolt from the theatre, but, somehow I was mesmerized by this remarkable piece of film art. I was being taken into the life experience of a person trapped inside of his body. At the age of just 43, Jean-Dominique Bauby was catapulted from his life as the sophisticated editor of Elle, his life as a father, his life as a lover, and his dazzling life of freedom and excitement. His world collapsed into a single room in a remote seaside hospital far from his friends and family. Surrounded by strangers, unable to move any part of his body (except for his left eye), he was now in a prison from which there was no escape.
The Diving Bell and the Butterfly
2009
Jean-Dominique ('Jean-Do') Bauby, the editor of Elle, the fashion magazine, led a privileged, exciting, globetrotting life, until, at the age of 43, he fell victim to a devastating stroke and “locked-in syndrome.” Locked-in syndrome is a rare neurological condition, where the voluntary muscles of the individual are paralyzed, except those that control eye movement. As a result, the individual cannot move or speak, although some communication is possible through blinking or other eye motion.
The diving bell meets the butterfly: identity lost and re-membered
Theoretical medicine and bioethics, 2001
Jean Dominique Bauby, former editor of Elle, suffered a stroke to his brain stem that left him with locked-in syndrome. Subsequently, through blinking his left eye, he writes his memoir of this experience, The Diving Bell and the Butterfly. This paper explores the meaning of embodiment, especially as one's body bears upon one's personal identity. It explores the various challenges and threats to selfhood that result from Bauby's experience and recounts how Bauby rises to the challenge through his memory and imagination.
Meaningful life is possible with Locked-in syndrome the personal account of a survivor
Serbian Journal of Experimental and Clinical Research, 2012
Locked-in syndrome (LIS) is a rare condition characterised by quadriplegia and anarthria and is usually caused by a bilateral ventral ischemic pontine lesion. Patients are normally fully conscious, but their only mode of communication is with vertical eye movements and/or blinking. Although the mortality rate is high, it has been shown that patients can survive for a significant period of time. Once an LIS patient becomes medically stable, given appropriate medical care, his or her life expectancy may be several decades. LIS patients may suffer appreciably if they are treated by hospital staff as nonresponsive. Medical professionals and lay people often assume that the quality of life of an LIS patient is so poor that it is not worth living. However, the reported overall quality of life of LIS patients is not significantly different from that of healthy subjects. In this case report, we describe a 60-year-old retired man living in a locked-in state due to a brainstem infarct. His personal account vividly reveals his inner thoughts, a great deal of suffering, and his ability to cope with his condition throughout seven years of illness. LIS patients' early referral to specialist rehabilitation services and strong social support from family greatly improves LIS patients'their quality of life. Even limited physical recovery can improve quality of life and enable LIS patients to become active members of society and return to living with family.
Abstract Publication, 2020
This paper examines the very notion of Disability Authorship of the anomalous bodies through the Autosomatography, The Diving Bell and the Butterfly (1997) by the former editor-in-chief of French 'Elle' Jean-Dominique Bauby, which is a narrative that incorporates counter-narrative of empowerment, unlocks the credentials of the locked-in syndrome, employing the only three things that aren't paralyzed; his left eye, his imagination and his memory. The left eyelid is awakened to "superior seeing capacities" (Couser, 2007) in terms of his life before and after the catastrophic stroke, that is found, trapped within a Diving Bell. This inner life of Jean-Dominique, holds him captive, locking him in a territory where he discovers his imagination, as a free-flowing butterfly travelling to far off lands traversing time, and his desire "to transcend the limitations of the human".(Corne, 2010) This ability exceeds the physical norms and standard social model of a body that politicizes disability. The author's disappointed thoughts on the dependence nature of a "vegetable" lead to the recognition and acceptance of an independent thought process that makes him stand out as the abled-disabled, owning a body that matters. This autosomatographical piece of writing renders the author a function, not of advances in the medical treatment of locked-in syndrome, but his affirmation of control over his own body. Such control may not save him from the paralysis, yet his authorship of disability narrative helps him claim autonomy despite the disability. Apart from the implicit step-up in his own identity when the spatial capabilities and orientation are limited, this paper also scrutinizes the apprehension of such a condition by the others who can see him and interpret him as they like, that becomes an inherent element of his identity because he can "never actually occupy that point of view." (Schnabel, 2007)
Tethered to the diving bell: beyond vulnerability to autonomy
The virtual mentor : VM, 2009
Respecting the autonomy of patients is complex and subtle. First and foremost, patients with serious and disabling illnesses experience dependence because their ability to express themselves is compromised in some way. They are vulnerable and need help. The Diving Bell and the Butterfly by Jean-Dominique Bauby tells the dramatic true story of a man living with locked-in-syndrome (LIS). His motionless body belies his desire to interact with others. As Bauby's memoir richly describes, autonomy is not simply a matter of having a will of one's own; it depends on our ability to communicate with others and on others' willingness to listen and connect with us. Because it was virtually impossible to tell what Bauby was feeling or thinking, caregivers had to find a way into his diving bell. They did this first by diagnosing and treating him, and second by finding ways to help Bauby express himself. By paying attention to his vulnerability, they helped restore his autonomy. When internal medicine residents and I discuss the memoir, we notice the intricacies, surprises, and challenges of respecting patient autonomy. The residents also empathize with the isolation experienced by seriously ill patients, which can lead to more compassionate care.
The locked-in syndrome : what is it like to be conscious but paralyzed and voiceless?
The locked-in syndrome (pseudocoma) describes patients who are awake and conscious but selectively deefferented, i.e., have no means of producing speech, limb or facial movements. Acute ventral pontine lesions are its most common cause. People with such brainstem lesions often remain comatose for some days or weeks, needing artificial respiration and then gradually wake up, but remaining paralyzed and voiceless, superficially resembling patients in a vegetative state or akinetic mutism. In acute locked-in syndrome (LIS), eye-coded communication and evaluation of cognitive and emotional functioning is very limited because vigilance is fluctuating and eye movements may be inconsistent, very small, and easily exhausted. It has been shown that more than half of the time it is the family and not the physician who first realized that the patient was aware. Distressingly, recent studies reported that the diagnosis of LIS on average takes over 2.5 months. In some cases it took 4-6 years before aware and sensitive patients, locked in an immobile body, were recognized as being conscious. Once a LIS patient becomes medically stable, and given appropriate medical care, life expectancy increases to several decades. Even if the chances of good motor recovery are very limited, existing eye-controlled, computer-based communication technology currently allow the patient to control his environment, use a word processor coupled to a speech synthesizer, and access the worldwide net. Healthy individuals and medical professionals sometimes assume that the quality of life of an LIS patient is so poor that it is not worth living. On the contrary, chronic LIS patients typically self-report meaningful quality of life and their demand for euthanasia is surprisingly infrequent. Biased clinicians might provide less aggressive medical treatment and influence the family in inappropriate ways. It