Injury and Illness,  Uncategorized

The necessity of madness in the story of surviving spinal cord injury

“Stories matter. Many stories matter. Stories have been used to dispossess and malign. But stories can also be used to empower and to humanize. Stories can break the dignity of the people. But stories can also repair that broken dignity.” – Chimamanda Adichie (Nigerian novelist)

There is a burgeoning approach to clients seeking medical care that upholds the view that our ability to act on the struggles of others requires an interest in the stories that they have to tell about their lives. I am not talking, here, about the “once upon a time” kinds of stories, but about the stories that people have to tell about who they are, where they come from and how they have come to where they are now. From such a perspective, we practitioners act as the collectors, interpreters and potential editors of patients’ stories. It is believed that conversations that are interested in the stories that patients have to tell are useful because they help prevent us from mistaking patients for being the sum of their injuries. Furthermore, it is believed that encouraging patients to tell the stories of who they are and where they come from provides a way for them to recollect themselves from the “wreckage” of their lives. Practitioners serve as powerful audience members in the telling of these stories. As a client wrote to me while writing this article:

“The world that exists in the space you as a professional reside in with your patient or client is unique and has the ability to strengthen or break them down in a very profound way.”

I have come to believe that a spinal cord injury is ultimately an assault on an individual’s sense of ‘control’, ‘identity’ and ‘coherence’. And, I would like to argue that how we talk about, with and to patients is essential to the recovery of such ‘senses’. This argument is based on the premise that salvaging patients’ lives involves permitting them the full range of human responses, including: grief, denial, imagination and hope. As Alfred Adler said “We must never neglect the patient’s own use of his symptoms.” In other words, patients are entitled to their own ways of grappling with their injuries. How much ownership do we allow them of their own versions of recovery? As recent research suggests: what if it is the loss of control, rather than the impairment itself, that is most likely to lead to emotional suffering? What if the resilience required for recovery lies in individuals’ own life stories; in remembering the skills they have learned through previous struggles; in finding their own words for relating to their own, now unreliable, bodies; and in the power of their imaginations in transcending the harsh daily realities of their present situation? How do we as practitioners make room for patients to imagine a future ‘self’ despite and even because of spinal cord injuries?

The Narrative Wreckage
We are born into certain stories about how life unfolds. From a very young age there is a certain expectation of how our lives will turn out. Think of the child born with very long fingers, whose parents begin to joke that, one day, “he is going to be a piano player”. It seems as if, from a very early age, we are handed a script of how life is expected to unfold. As we grow older we slowly take ownership of these scripts, hopefully adjusting them to our own needs and dreams. Usually such scripts are embedded with the expectation that life will go well for us, that it will be good to us. Any spinal cord injury will undoubtedly serve as an abrupt disruption of the story that we have for how our lives should be. In this way, a spinal cord injury forces you into the margins of life: into a life not planned for; into a different parking space; into a changed view through public eyes and from where much of life as you knew it seems out of reach. You get to sit and watch people carrying on with life as normal, while it takes you three hours to get ready for your day, while shopkeepers talk to you as if you somehow can’t think because you can’t walk, or family members give in to the temptation to treat you as if you need feeling in your feet to make decisions for yourself.

Injuries do not only have the potential to paralyse us physically. Injuries have the potential to bring all aspects of our lives, even our sense of purpose, to a stand-still. As the late Michael White, a chief founder of a narrative approach writes: “when people, who have been through significant trauma, have little sense of personal agency, they often feel irrelevant, empty, desolate and paralyzed – as if their life is frozen in time.” Therefore, when these people enter into our care, our job is not just to help them to become physically well again but to salvage their sense of personal agency.

The Narrative Salvage
We seem to function best when there is a coherent link between one moment and the next; when the story we have for our lives bares some coherent flow. Sudden illnesses or injuries are traumatic, not only because they interfere with our physical bodies but because they disrupt the coherence of the stories we have for our lives. Our lives as we know them are brought to a sudden stand still. As patients, our lives become suspended in a world of medical care in which we have little sense of control, feeling of familiarity or access to the things that usually define who we are. Our dreams and ideas for the future are suddenly balanced on the uncertain edge of a prognosis. One of the most significant consequences of this is that our entire identity is put into question: “Who am I?”; “Am I still a father if I can no longer kick a soccer ball with my son?”; “Am I still a mother if I am not the one who is rocking my child to sleep at night?”; “Will I still be able to do the work that I do if I have limited use of my hands?”; “Am I still a real man if I struggle to get an erection?”;“Perched in this wheelchair, am I still the person I used to be?”

Patients entrust us with their experiences, their symptoms, their anguish and we retell their own stories of turmoil back to them in the form of professional interpretations. In the narrowest and sometimes crudest form, we give patients back their stories through a ‘diagnosis’. There is without a doubt value in a clear diagnosis. Not only does a diagnosis allow for appropriate treatment, but it enables patients to attach themselves to some professional understanding of their predicament. However, there is also room for concern for how we risk oversimplifying the struggles and triumphs of individual patients, by reducing their experiences to a purely medical language of definitive diagnoses and generalized ‘evidence based’ prognoses. As Gordon Allport is claimed to have said, “Psychology should not be content with studying an artificial man, but should describe and explain a real one”.

The science we use to understand and treat our clients is forever at risk of overlooking that which is deeply unique and personal to each individual. Patients arrive in hospitals out of real lives and deeply personal experiences; they are not born out of textbooks. In one of his many books on the art of Psychotherapy, Momma and the Meaning of Life, Irvin Yalom writes:

Learning about patients – yes, that was the business of medical school. But to learn from patients – that aspect of my higher education came much later. Perhaps it began with my professor John Whitehorn, who often said, “Listen to your patients; let them teach you. To grow wise you must remain a student.” And he meant much more than the banal truth that the good listener learns more about the patient. He meant quite literally that we would allow our patients to teach us.

There is a growing contemporary movement in psychology that opposes reductionist and theoretical views of human experience; one that seeks out a way of getting closer to patients’ individual experiences and allows them to teach us more about those experiences, as we strive to help them to articulate these experiences in ways that encourages their own resilience. My interest, therefore, is in exploring how to talk with patients in ways that help to salvage them from the consequences of their illnesses or injuries.

I think that part of this salvaging lies in paying some attention to the image that we have of our patients and how we respond to that image. We seem to be accustomed to responding to disabled bodies in two distinct ways: through marginalising or colonising them. For example, recent research has shown that we may tend to neglect symptoms of depression in people with spinal cord injuries, because it is so “expected” given their obvious predicament. We marginalise the spinally injured to the realm of taken for granted suffering. And, it’s a place we don’t like to join them at. As a society, we tend to turn our back on suffering. On the other hand, when we do attend to their suffering: how much of a voice and a choice do we give them in what we do treat and how we treat it? Do we colonise the choices they face about what is to be done and how it is to be done?

One may argue that patients do not have the expertise to contribute to their own treatment. The practitioner is the expert, not the patient. However, working with people in a rehabilitation setting, I have become increasingly interested in what occurs when we show an interest in lives that patients have lived and the personal expertise that they come into the medical setting with. What are the skills that life has taught them so far? What are the resources that lie within them? What expertise do we need to recognise within them that will help them traverse the gap they face between where they are and where they want to be? From such a vantage point, it is not our jobs to tell the people we care for how to think or feel about the unreliable bodies that they now find themselves in. More likely, it is our work to help them make sense of these new bodies and find a way of including the image of this new body in an imaginable future.

The necessity of Madness
The greatest risk a person faces during their hospitalisation is that they become a ‘patient’ – that they begin to define themselves by what has happened to them. Naturally, the injury or illness will be the main theme in the story that they tell about their lives for a considerable time following their injury. This is, no doubt, a very important part of recovery. When you suddenly no longer have control of your own bowels or it takes you up to three hours to get ready in the morning, it is difficult not to define your life by the trauma that has caused such drastic, at times humiliating and always unwelcome changes.

One of the primary experiences that shape how we define ourselves is our bodily experience of ourselves. Feelings do not occur in a vacuum, they are housed in a body. To be able to “feel” something, one must have a body in order to experience such feelings within. Spinal cord injuries provide drastic changes to the ‘feeling body’ that we experience life from. Not only are our bodies changed but the world seems to respond differently to these changed bodies. Therefore, I propose that one of the most significant aspects of rehabilitation is how practitioners “respond” to these bodies in an everyday fashion. How do we “treat” injured bodies through the way that we speak with them? How do we speak to and about injured bodies and the people who inhabit them? Do we call patients “The quad, in bed 4” or “Mr John Smith, the father of 3”?

We (patients and practitioners alike) have a very distinctive image of disability: of people remaining always less than what they were before. We (as practitioners) risk falling into the trap of believing that our job is to help our clients “come to terms” with this status quo. Martin Luther King wrote that “True compassion is more than flinging a coin to a beggar; it is not haphazard and superficial. It comes to see that an edifice that produces beggars needs restructuring.” We don’t want to help produce “beggars” out of our clients. We don’t want people to have to beg for legitimacy in society just because they are in wheelchairs. We want to make room for people living purposeful lives out of wheelchairs, who are taken for granted as legitimate members of society. What if such social change – legitimising the lives of those living out of wheelchairs – begins in the acute stage of rehabilitation; with how the practitioner interacts with his/her client? How do I go about interacting with people in ways that assist them to identify, to embrace, and to honour their strength?

I, therefore, propose that we develop a greater curiosity in the language that we use when we talk about and to our patients? Perhaps we need to move a bit away from speaking about “cure” and “outcomes”, to a language of “purposeful living”. My argument is that a focus on “cure” and “outcomes” will always leave a person with a spinal cord injury with a sense of not-quite-getting-there. What if the focus was on discovering purposeful ways to continue living despite and even because of injury or illness?

For those who prefer an “evidence based” approach to our patients, I would like to introduce you to a living, breathing, rolling example of purposeful living – Sarmad Tariq (see short documentary here). Sarmad is a story teller, motivational speaker, businessman, athlete, and quite frankly: Mad Man. Basically, he is far more than the average abled bodied man. Even though he broke his neck through a spur of the moment shallow dive at the age of 15, his injury has not discouraged him from diving into the rest of his life, head first, at every opportunity. At the time of his injury his dream was to one day become world heavy weight boxing champion. Although his injury has forced him to rewrite his dreams, his need to be pushed, challenged and get a kick out of the knocks from life has never subsided. Following his recovery, fraught with life threatening complications, he decided that no one but himself was responsible for his own life and he went on to secure a surprisingly independent future. He is almost pathologically reluctant to depend on others and is unusually determined to live a “very full life”. In this quest, he has achieved some crazy things, like competing in the New York marathon despite a ruptured hip. He practically tortures his physical self in order to transcend its limitations. To me, he is an exemplar of, as he puts it, “how to live on despite our limitations” and is a bit insane in the way he goes about his commitment to “make the impossible possible”. The belief that “nothing is impossible” is a belief that Sarmad Tariq held before his injury. It comes out of the pre-injury chapter of his life and all that his injury has done in editing this belief about life is teach him that nothing is impossible “both ways”, good or bad. Since his injury he has decided to live a purposeful life, despite the bad, by taking control of his own living. His greatest satisfaction lies in how his own living influences the lives of others. The way he goes about this may not always make medical sense, in terms of the damage that he risks doing to his body. But, to dissuade him from his efforts would be to rob him of life-giving purpose and marginalise him to the limitations of what we conventional understand as ‘disabled life’. Sarmad Tariq doesn’t want a special parking place. He would rather break the world record for the longest non-stop over land drive by a quadriplegic. Which he has! He tells me that he plans to complete his Karakoram highway challenge this August, making him the first quadriplegic to drive up the highest supposedly paved road. (for more from Sarmad Tariq, see his TED talk in Karachi, 2011)

In Conclusion
It seems possible that working with spinal cord injuries requires a new kind of psychology. Are we, as practitioners, overly focused on pathology, on the ways in which people aren’t “coping” or “accepting” their injuries? Do we, as practitioners, see it as our job to define what coping and not-coping should look like? What if it is the loss of control of your life, rather than the impairment itself, that is most likely to lead to emotional distress? If so, then, perhaps our jobs are to help patients take charge of their own lives and bodies in ways that they feel fit. Perhaps our job is to encourage clients to dream and imagine a purposeful life ahead of them. Do our client’s dreams always have to seem logical and reasonable to us? What if the only way to survive a spinal cord injury is to rely on a little bit of your own madness to carry you through it? And, what if we have more to learn from our clients than they do from us?

Seated in a wheelchair, on the margins of “normal” life, the injured gain a vantage point from which they have a new and powerful perspective on life. A perspective that I believe we can all learn from if we listen with enough curiosity. I will never forget Sarmad Tariq’s response to my curiosity in how he survives the frustration of living in a less reliable body. He pointed with a typically tetraplegic hand to a tattoo on his neck – a symbol for Allah at the location of his injury. He told me how Allah had loaned him this “accommodation” (his body) for this brief lifetime. Although he has been somewhat downgraded from the standard luxuries that we come into life with, it is still only temporary accommodation for which he remains grateful. I am not a religious man but that account of how he lives in his body continues to stay with me.

Jason Ross is a Counselling Psychologist with a fervent interest in the use of LANGUAGE and TEXT. His areas of practice include: injury and illness psychology, sexual health, relationships and addiction.

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