Thus she was a ‘moron’, ‘fool’, a ‘booby’, or so had appeared and so been called, throughout her whole life, but one with an unexpected, strangely moving, poetic power. Superficially she was a mass of handicaps and incapacities, with the intense frustrations and anxieties attendant on these; at this level she was, and felt herself to be, a mental cripple—beneath the effortless skills, the happy capacities, of others; but at some deeper level there was no sense of handicap or incapacity, but a feeling of calm and completeness, of being fully alive, of being a soul, deep and high, and equal to all others . . . .
The next time I saw her, it was all very different. I didn’t have her in a test situation, ‘evaluating’ her in a clinic. I wandered outside, it was a lovely spring day, with a few minutes in hand before the clinic started, and there I saw Rebecca sitting on a bench, gazing at the April foliage quietly, with obvious delight. Her posture had none of the clumsiness which had so impressed me before. Sitting there, in a light dress, her face calm and slightly smiling, she suddenly brought to mind one of Chekov’s young woman – Irene, Anya, Sonya, Nina – seen against backdrop of a Chekovian cherry orchard. She could have been any young woman enjoying a beautiful spring day. This was my human, as opposed to my neurological, vision . . . .
Is it possible, I wondered, that this being before me—at once a charming girl, and a moron, a cognitive mishap—can use a narrative (or dramatic) mode to compose and integrate a coherent world, in place of the schematic mode, which, in her, is so defective that it simply doesn’t work? And as I thought, I remembered her dancing, and how this could organize her otherwise ill-knit and clumsy movements.
Our tests, our approaches, I though, as I watched her on the bench—enjoying not just a simple but a sacred view of nature—our approach, our ‘evaluations’, are ridiculously inadequate. They only show us deficits, they do not show us powers; they only show us puzzles and schemata, when we need to see music, narrative, play, a being conducting itself spontaneously in its own natural way.1
On August 30, 2015, we lost Oliver Sacks, a man who has educated us and taught us the true meaning of compassion, a founding father of medical humanities. Though he has often poked fun at his own myopia and visual impairments, he always deftly turns his inner eye to what presents beyond the surface, offering insights that reveal the person persevering while a pernicious squatter, an illness or condition, takes up residence within. Through a short vignette, Sacks acknowledges and delineates the challenges of an individual’s condition, while coaxing his readers to encounter the person who is more and greater than the diagnosis, inviting us to experience our own capacity for empathy and to embrace the humanity that we inherently all share despite apparently physical differences and hardships.
Any single vignette serves to teach numerous invaluable lessons. In “Rebecca,” from The Man Who Mistook His Wife for a Hat, Sacks tells of a nineteen year old girl with an IQ of less that sixty, who suffers from a congenital condition causing a partial cleft palate, degenerative myopia, and mental defects. Sacks acknowledges the necessary dispassionate, clinic vision, but also cautions that is only part of the picture of the individual being treated. Sacks encourages trying to glean some creative, emotive, or spiritual spark essential to the individual to arrive at a more holistic view. This can enhance the therapeutic relationship formed between physician and patient. In doing so, he encourages us to avoid objectifying or stigmatizing the individual by reducing the patient to the disease commanding our attention.
There is a danger in letting a disease, a condition, or a diagnosis to become a synecdoche. While allowing the part to stand for the whole may be powerful evocative device in the hands of a skilled poet, in medicine it is important to guard against reductionism that permits attending to illness to supersede treating the whole person. The disease presents as a problem to be solved or managed. But a person cannot be “solved,” cannot always be made whole; sometimes the patient must manage a condition for a lifetime, and sometimes even the time spent in treatment and recovery can compromise the individual. As Arthur Kleinman warns, in concentrating on the problem to be fixed “in the practitioner’s act of recasting illness as disease, something essential to the experience of chronic illness is lost”.2
Physicians may overlook what coping costs individuals, how it changes their quality of life and their relationships, as concentrating on the disease at hand can seem seductively efficient. Clearly physicians have limited time and resources to expend on each patient and need to maintain their professional distance and objectivity. Yet making the effort to gain an insight into who that person is who is being treated may uncover a love, passion, or source of inspiration that can anchor them and help them cope, reminding them of who they are above and beyond their disease, while having the added benefit of reminding the physician of the person persevering beyond the disease. The challenge for the physician is to move beyond seeing the pieces, symptoms and diagnoses, to treat the whole individual.
One way to do so is by listening and engaging the patient’s narrative. We are reminded that the external, what is seen by the observer, and the internal, what is experienced by the “I” that is the patient, are never the same. Acknowledging that difference and making an effort to cross the chasm between observer and experiencer can be of great benefit to both. Sacks and others such as Rita Charon advise that through narrative it is possible to get beyond the list of symptoms, maladies, and test results, to gain an understanding of the individual patient. Narrative, says Sacks “gives a sense of the world”,providing the design or pattern that gives a person’s life meaning. Narrative is the glue that gives the emotional coherence to the individual. In Narrative Medicine, Charon shares how listening to a patient changed how she practices, “to reach for and visualize Luz’s point of view helped me take care of the patient by bringing me to her side”.3
Engaging patients tell their narrative rather than identifying a set of symptoms may allow them to not only remember details useful in making a diagnosis, but will likely reveal clues about the best way to help them manage the condition, overcome roadblocks, address anxieties, and speed recovery. The physician needs to listen and enlist the patient as a participant rather than objectifying the patient as one to scrutinize and fix.
There are limits to narrative that must also be considered. In The Wounded Storyteller, Arthur Frank cautions that, “from their families and friends, from the popular culture that surrounds them, and from the stories of other ill people, storytellers have learned formal structures of narrative, conventional metaphors and imagery, and standards of what is and is not appropriate to tell”.4 And as Sacks recognizes in “Rebecca,” there are different types of narrative that may provide pattern, organization, and meaning for the individual. Some patients may not communicate their narrative verbally; narrative, as Sacks uses the term, can be found and expressed through movement and art, drama and music, through the body as well as the tongue. As we are now embracing narrative as a better way to understand the needs of patients, it is also important to recognize that not all patients are equally articulate, and that words do not necessarily mean or are interpreted in the same way by everyone. Now that we live in a world that encourages visual rather than oral literacy, we need to listen with our eyes as well as our ears. Our willingness to look for those composing principles of the person, to distinguish the ways in which they best express themselves or to which they best respond, can be invaluable in treating them.
- Oliver Sacks. “Rebecca,” in The Man who Mistook His Wife for a Hat. Picador, published by Pan Books, London, 1986: 170-172. All quotations are from this edition.
- Arthur Kleinman. The Illness Narratives: Suffering, Healing and the Human Condition. New York: Basic Books; 1989, p. 6.
- Rita Charon. Narrative Medicine: Honoring the Stories of Illness. Oxford: Oxford University Press; 2008, p. 6.
- Arthur Frank. The Wounded Storyteller: Body, Illness and Ethics. Second Edition. Chicago: University of Chicago Press; 2013, p. 3.
COLLEEN DONNELLY is a English professor at University of Colorado at Denver specializing in medieval literature and modernism. She also has a degree in biology and has done research and taught in that field. She is currently doing research on representations and stigmatization surrounding mental disorders and trauma and pursuing interests in medical humanities.