Friday, September 30, 2016

The healing power of the story

Share-a-Poem Postbox on Elm Street, Somerville
In the most fundamental of ways, stories sustain us. They are instruments of being and becoming, and hold within their words and narrative threads the politics of the private, the social, the cultural, the communal, the public and all states in-between-and-not any of those. Michael Jackson (the anthropologist and international studies scholar, not the Moonwalker) notes: "In every human society, the range of experiences that are socially acknowledged and named is always much narrower than the range of experiences that people actually have."

"Tell me a story" is an invitation to imagine and bring into discourse not only worlds outside ourselves but also those most intimate to us, the things that have burrowed deep inside our psyche and are given life in expression. "Tell me your story" is an invitation to make sense of the disparate threads of our existence, to give it coherence and weight...and yes, meaning.

Three medical practitioners and receivers of stories, and one facilitator-journalist who might be seen as an excavator of stories, were part of a panel discussion on "Storytelling and the future of medicine" held at the Massachusetts General Hospital (MGH) in Boston this week as part of the "Intersectional Entrepreneurship" festival of the city known as Hubweek. The festival brings together technology firms, researchers in academic and corporate spaces, media, urban planners and a range of other city stakeholders to learn about and explore a variety of issues that impact us today and in the future. Given my own interest in "interfaces"--between tech and health, between health and literature, between life...and well, the life of the mind--the title of this panel was an instant draw. That, plus my own implicit belief in stories as a way of making sense across contexts.

Starting off the panel was Annie Brewster (MD-Internal Medicine and, one of the founders of the Health Story Collaborative), who talked about her own exploration, having been diagnosed with multiple sclerosis in her early thirties, into what it means to integrate illness into your life without being overwhelmed by it. "One way of doing this--of finding meaning--is to make room for stories in your life" and in doing so, you discover that while illness shapes your life in important ways, your life is more than the illness.

"After the trauma gets metabolized, it turns into a story," said Suzanne Coven (MD and writer in residence at the Division of Internal Medicine, MGH), who described her own foray into medical storytelling as a result of discarding binaries. "When I was younger, I harbored the mistaken assumption that choices are binary. I wanted to be a writer, but I thought it would be too hard, so I went to medical school." It took her several years to figure out that this binary was false--it didn't have to be an "either-or" choice, life could encapsulate several choices at the same time. "My mission now is to being more storytelling into medicine and to being more medicine into storytelling."

Narrative psychologist Jonathan Adler, on the other hand, was drawn to this field because he was "interested in the ideas of the humanities and the arts and the tools of science". The questions that guides his inquiry is "How do people make sense of their lives?" and "How can this inform the healing process?" Describing narrative identity as "the story of your past as you frame it, the present as you see it, and the future as you imagine it," Adler noted that the ways in which we position health and illness in our lives are key to finding the emotional tools to cope with it. "Illness is a moment of biographical incoherence," and for many people finding its meaning and locating it within their own life story is part of the battle towards regaining a sense of wellness.

Moderating the panel was Boston Public Radio journalist and health blogger Rachel Zimmerman.

Decrying the current state of the health care system in the United States, which creates an artificial and almost paralyzing distance between the practitioner and the patient, the panels talked about how they have been able to bring stories back into their own approach to treatment and care. "We're all obsessed with boundaries, particularly in this risk management society," noted Coven. Both she and Brewster spoke of how revealing vulnerability as professionals and as people was an important part of eliciting stories from patients, and in the process breaking down these boundaries. "It's about breaking this myth of the doctor as some sort of superhuman being who has all the answers."

What I found fascinating was Adler's identification of four themes that run in different measure through most illness narratives: agency (you as the narrator and main character, creating meaning in your story), communion (your relationship with the world and others), redemption (overcoming or dealing with illness) and contamination (looking at the illness as having disrupted or destroyed your life). American culture places a premium on the redemptive narrative, so in many cases the practitioner needs to help people find that thread of personal redemption in thinking about their story. For more information on Jonathan Adler's work, look at this.

Brewster pointed to "a million instances" where the simple fact of listening and being attentive to the patient's story seemed to make a big therapeutic difference--and this is being borne out by many studies across contexts. Simple inversions, such as changing the vocabulary and climate of physician-patient interactions ("Why do we call them 'complaints'?" asked Coven), paying empathic attention to the details of how people talk about their illness ("even if empathy has to be faked at the end of a long day"). "We tend to rush through interactions by saying 'I'm running out of time,' while usually the truth is that we're running out of answers!" quipped Coven.

The infusion of more and more technology into medicine is in some ways accentuating the distance between the so-called healing professions and the person seeking health, and in such a context we "need the stories even more," said Brewster. Fields such as epigenetic and personalized/precision medicine call for a return to the details of lived experiences, which can provide the explanatory or even exploratory frameworks within which treatments could be imagined for each specific case.

The good thing is that we have more medical storytellers today than ever before, with names like Atul Gawande, Abraham Verghese and of course the near-legendary Oliver Sacks becoming familiar to those who love stories and making medicine just a little more about life and humanity than about science.

While Coven recalled another well known piece of advice from Sir William Osler, widely recognized as the father of modern medicine, that "great physicians" treat the patient rather than the disease, I'd like to end with this one, which points to the need to bring back the narrative into medicine--

“Nothing will sustain you more potently than the power to recognize in your humdrum routine, as perhaps it may be thought, the true poetry of life – the poetry of the commonplace, of the plain, toil-worn woman, with their loves and their joys, their sorrows and their griefs.”

No comments: