This informal CPD article LOCKED IN RAGE was provided by David Taransaud, Psychotherapeutic Counsellor at Quality Education with Care, a family-run business with more than seven decades collective experience working in schools and residential care homes for children.
Imagine the unimaginable. Imagine your life stripped of everything that gives it worth and meaning. Picture yourself trapped in your own body, bound to a hospital bed. Fully aware but paralysed from head to toe: a living rigor mortis. You want scream but cannot make a sound. You cannot even signal for the attention of a nurse. The only way you are able to communicate is by blinking your left eye, the only part of your body not paralysed. One blink means yes; two means no. Imagine the terror.
This describes the bedridden life of Jean-Dominique Bauby, the highly successful editor-in-chief of the French fashion magazine Elle. After a massive brain stem stroke the 43-year-old father of two surfaced from a 20-day coma paralyzed by a rare neurological disorder called locked-in syndrome (LIS). Incapacitated and prisoner in his own body, the only muscles he could voluntarily move were those around his left eye.
LIS affects around 200 people a year worldwide, as Bauby puts it “the chances of being caught in this hellish trap are about as likely as those of winning the lottery” (1997, p.19). But although it is a relatively rare condition, there are parallels between the perceptual world of locked-in victims and that of adolescents who grew up a world that denied them love and who have enclosed themselves in an illusion of superiority.
Trapped from Within
Despite his near-total immobility, Bauby learned to communicate using a code set up by his speech therapist. She recited the letters of the alphabet according to their frequency of use, until with the blink of his left eye, Jean-Dominique stopped her at the letter to be noted. The procedure was then repeated for the letters that followed until words and sentences were formed. In the cinematic version of Bauby’s struggles (Schnabel, 2007) the first thing his speech therapist asked him is what he wanted. With one blink after another, Bauby spelled: D… E… A… T… H.
Similarly, children born into a life of cruelty and neglect often contemplate suicide. A large body of research demonstrates that exposure to severe maltreatment by a parent or guardian not only contributes to a distorted sense of self, aggressive and self destructive behaviour, but it also leaves the victim more vulnerable to depression and suicidal ideation (Mendel, 1994; Miller, 2013). A 2010 NSPCC report states that 11 to 17 year olds who have suffered physical and emotional ill-treatment, sexual abuse or neglect are over 6 times (6.4) more likely to attempt suicide than non-maltreated young people in this age group (Radford et al. 2010). But “suicide is as much a state of mind as an action” writes Dennis; “if the pain is great enough, something inside you decides that dying is a better fate […] and you shut down inside […] you resign yourself to go on living like one of the walking dead” (2014, p.51).
When it comes to suffering, there is no deeper hurt than that caused by the people in whom we have placed our trust. Recent MRI studies show that intense emotional pain such as rejection from a significant other activates the same neural pathways as physical pain and produces similar sensations (Kross, 2011). Rejection is a body hurt. Therefore, when the giver of life is the source of distress, when the first love brings pain and rejection, trust is shattered, and everything that gives life meaning and worth dies. Then, the whole world turns into a dangerous place where intimacy goes hand in hand with humiliation. Psychological pain not only registers as physical pain, it also translates in the brain as potentially life-threatening and triggers a self-protective reaction.
In short, when love fails, “primal panic” ensues (Panksepp, 1998), and then the body survival response system immediately takes over and activates the fight-or-flight response. However, for the child raised against a backdrop of fear and shame, for the child brought up in an environment that is relentlessly cold or abusive, there is no escape and fighting is futile. His only option is to regress into fearful submission. Unable to find comfort, warmth or protection in the outside world, the child retreats into himself. He sinks into excruciating shame and helplessness. He collapses in helpless terror, forsakes his relational needs and his terrified wounded Self goes into protective hiding (Taransaud, 2011). So, like locked-in victims, a part of his self becomes trapped within, condemned to solitary confinement in the darkest cellar of the psyche from which his cries of despair remain unheard and his needs for love unmet. Yet in spite of the abuse and humiliation he has endured, hope survives.
Renewed Hope
Although trapped in his own body, Bauby did not allow his condition to define who he was. With the help of a scribe, letter by letter, one blink at a time, he painstakingly dictated a 130-page manuscript about his experience of being locked-in. On 7th March 1997, Bauby’s memoir ‘The Diving Bell and the Butterfly’ was published and sold out its entire first print run in one day . Critic and writer Edmund White wrote: “Read this book and fall back in love with life” (1997, p.10).
Bauby’s journey from suicidal despair to fragile hope and spiritual rebirth was marked by the visit of the French journalist Jean Paul Kaufmann. In May 1985 Kaufmann’s plane was hijacked by Hezbollah after Bauby had given up his airline seat to him. He was captured by the Lebanese Islamic militia and held hostage in Beirut for over 4 years, bound at all times by one arm and one leg. Kaufmann compares his four-year ordeal to Bauby’s situation. “I can roughly guess what you’re feeling, because being held hostage isn’t so different from your situation”. He then validates and normalises Bauby’s feelings: “much of the time I was in despair, suicidal, angry”; and finally he gives him hope: “but I survived. Hold fast to the human inside of you and you’ll survive”. It is through empathic attunement that Kauffman is able to join Bauby in his corporeal prison and make himself at home in it.
Likewise our work with emotionally wounded adolescents requires us to fully enter their perceptual worlds, to allow ourselves be moved by their fragility and suffering, and to communicate to them that given their personal history, their destructive urges and feeling of despair are normal responses that can be survived (Khan, 2001).
In ‘A Way of Being’ Rogers compares the experience of being empathically understood to that of “a prisoner in a dungeon tapping out day after day a Morse code message, ‘Does anybody hear me? Is anybody here?’ And finally one day he hears some faint tappings which spell out ‘Yes’. By that one simple response he is released from his loneliness; he has become human again” (1980, p.10).
Empathic attunement can indeed reach the loving parts of the self that have been ‘locked in’ against their will. It is only through compassion that suffering is released and transformed (Hamilton, 2013), as demonstrated in the ‘Love Study’ conducted by the Institute of Noetic Sciences in California (IONS).
Researchers, seeking to measure the impact of compassionate intention between loving couples, placed husbands and wives in two separate sealed chambers. The wife sat alone with her body connected to various monitoring equipment while her husband watched her on a closed circuit video system from a different room. At intervals researchers instructed him to send his wife loving thoughts and feelings. Although she did not know what her husband had been asked to do, her body knew; “the monitoring equipment showed that her blood pressure and perspiration rate changed dramatically at precisely those times when her husband was connecting lovingly with her” (Dennis 2014, p.98). The probability of this happening by chance was 1 in 11,000 (Hagerty, 2009).
As the ‘Love Study’ suggests, the focusing of one’s tender thoughts on another can have a profoundly positive effect. Love can heal. Love can reawaken attachment needs and put psychological development back on track (Teicher, 2000).
And so, regardless of the protective walls they have built around their hurts, emotionally wounded young people can still be reached. But in order to develop an empathic presence and a compassionate heart we first need to reacquaint ourselves with our own locked-in emotions. We must follow in Kauffman’s footsteps and liberate ourselves from whatever limits our creative process. For only those who have freed themselves from their own fears and unhealed hurts can convey to others that despair can be overcome.
We are all trapped
Like Kauffman, many of Bauby’s family and friends were able to join him in his forced solitude, but others could not, they too were trapped in their own ways. In his memoir he recalls the old acquaintances who never visited because they could not bear to see him incapacitated, and the gossipers who had written him off as a vegetable who no longer belonged to the human race. He describes the helplessness of visitors “gasping for air” who “turned tail and fled back, their resolve abandoning them on [his] very threshold” (p.101). He also remembers the hard-hearted hospital staff and the pompous detachment of a “couldn’t care-less doctor, arrogant, brusque, sarcastic” (p.62).
It seems that anything that symbolizes otherness troubles us deeply, as depicted in the 2014 public service announcement: ‘The Eyes of a Child’ (Beauregard, 2014). On the occasion of the International Day for Disabilities, the Noemi Association invited parents and their children to take part in a fun educational game. Sitting side by side and separated by a partition screen, children and parents were shown clips of people contorting their faces into humorous positions and they were asked to mimic them. At first everybody enjoyed playing the game, until the person on the screen was a young girl with a disability making a funny face. While every child continued playing innocently, the adults seemed too embarrassed, they stopped and stared uncomfortably.
People with a disability make many of us nervous. We avert our gaze or stare at them with pity and fear. We infantilise them or brand them with derogatory labels. We do not want to associate with them. As Karen Horney (1945) puts it, they trigger such level of discomfort within us that we act like the man who chases the wretched beggars from his door because they are breaking his heart. They challenge our naïve beliefs about how much control we have over our lives. They put us back in touch with our own vulnerability. They serve as uncomfortable reminders of the disavowed aspects of our selves (Marks, 1999): the un-mothered, and needy child in all of us who yearns to be loved, but is too fearful to be vulnerably seen. For deep beneath our trusty armour of control and invulnerability we all secretly desire to be taken care of.
We all long to find an empathic other upon whom we can fully depend. Those private longings are nothing but residua of a time when our early needs for safety and affection were unmet, a time when something necessary for our emotional wellbeing was missing, a time when our caregivers were unavailable or unable to provide for our care.
Our attitude towards adolescents whose early survival depended on their ability to conceal the vulnerable part of their self beneath a smoke screen of aggression is not so different. They too are capable of evoking a deep sense of helplessness and unease within us, and we sometimes fear them for what they might reveal in us. When they reawaken elements of our own painful attachment history or stir up all that we have repressed, ostracized and disowned, they catapult us down memory lane, down a dimly lit pathway littered with the forgotten memorabilia of our childhood, and sometimes we unconsciously parent from those places (Taransaud, 2016). For we do not bury our childhood hurts dead, they remain active within our own personal unconscious, and when the repressed return the temptation to seize power, to ignore, dominate or demean is almost irresistible.
To distance ourselves from the love starved parts of ourselves, we label others with traits that are in fact true of ourselves. We project onto them what we fear within, avoid or condemn in them what we can’t admit in ourselves, or depend upon them to provide for what we lack in ourselves. As Rohr puts it, “if we do not transform our pain, we will most assuredly transmit it.”
(2008, p.25). In other words, it is only once we have mothered our own wounded self that will we be able to provide others with the parenting they never received. It is only once we have rediscovered all that is deep within us and provided the love-starved parts of ourselves with all that we have been denied but still long for that we will be able to reach the locked-in child in ourselves and in others.
Beyond Speechless Terror
Although developing an understanding for our own unloved self will allow us to deepen our compassion for others, it is not quite enough. We must also find a way to give a voice to the captive emotions. For as Richo asks: “if the child inside, the scared child, cannot tell us about his nightmare of the past, or his nightmare of the present, how can we ever console that child?” (1997, p.29).
Again, Bauby’s memoir informs our approach. In it he likens his corporeal imprisonment to that of a mute man encased in a diving bell sinking to the bottom of the ocean, but he compares his imagination to a butterfly taking him outside the confines of his inert body.
Similarly in our work with young people who do not have the words to verbally express their speechless terror, it is through active imagination and the arts that we will be able to give a voice to their unspoken hurt and help them return them to a more flexible way of living. For imaginative play and the creative media have the capacity to break from temporal and spatial confinement (Varavara, 2010). They provide an indirect, non-threatening way of communicating deep and often painful thoughts and experiences that have defied verbal expression but continue to crave recognition (Robbins, 1980). They provide a unique language to speak creatively about the unspeakable. As Van der Kolk confirms: “prone to action, and deficient in words, these patients can often express their internal states more articulately […] in pictures than in words” (1996, p.195). They offer a non-verbal vehicle for the safe release of caged emotions through metaphors and imagery.
In short, it is only by being creative that the individual unlocks his true self and rediscovers his potential for growth and happiness (Winnicott, 1971).
Conclusion
Jean-Dominique Bauby did not see his book become an international bestseller. He died of a heart failure two days after ‘The Diving Bell and the Butterfly’ was published. However, thanks to his memoir, physicians now understand that “the inability to communicate is far more frightening and debilitating than the inability to move” (Foster 2007, p.1), and that communication contributes greatly to the process of rehabilitation.
The same is true with teens. Giving a voice to their unspoken hurt is key to improving their capacity for creative living and hopefully, in time, helping them re-author their painful life experiences into a new narrative: a new story that is no longer about shame and humiliation, but about survival, hope and triumph (Solomon, 2014; Turner & McIvor, 1997).
Although Bauby never regained the ability to speak, thanks to the patience, creativity and dedication of his speech therapists he learned to communicate in new and creative ways. Our work with challenging young people is not so different from that of those working with locked-in patients. Freeing the captive emotions takes time. It is long and arduous process that requires empathic fortitude, emotional robustness, and determination verging on tenacity. But most importantly we must have a certain amount of faith and believe that far beneath their aggressive behaviours, the love-seeking part of the Self is still alive, longing to be warmed back to life by a caring and consistent other.
As Karen Horney (1945) notes, the moment we understand that there is a suffering human being behind the apparent inhuman behaviour, we open the possibility of reaching such a human being.
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References
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1 The American Congress of Rehabilitation Medicine defines locked-in syndrome as a state in which “patients are alert, cognitively aware of their environment, and capable of communication but cannot move or speak […] Their primary mode of communication is through vertical or lateral eye movement, or blinking of the upper eyelid.” (1995, p.207).
2 ‘The Diving Bell and the Butterfly’ took over 200,000 blinks to write. An average word took approximately two minutes.
3 Hagerty adds: “Three dozen double blind, randomized studies by such institutions as the University of Washington and the University of Edinburgh have reported similar results” (2009).
