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.”

Saturday, September 24, 2016

Street view(s)

The only image not my own: Courtesy Kendall Square Biking Guide
Walking out of Kendall Square Station, MIT seems pretty much like any other urban campus, tall-ish brick buildings and wide-ish streets where traffic privileges randomly crossing pedestrians rushing to a class or a meeting or just generally rushing. Like any other campus, that is, if you can rid yourself of the sense that you are in the heart of the military-industrial complex, where the power of Big Science and its relationship to Big Industry seems so pervasive. And then you see this jolly tumble of big orange letters that in a surreal way spell out the name of this square that is not really a square but something of a stepped-back intersection.

If you get out at the other end of the T station, where Microsoft makes its presence undeniably felt, you're reminded of the centrality of where you are, Silicon Valley notwithstanding, to all things digital. Of course, unmindful of the structured symbolism around them, the trees and the people go about their business (and their lunch).

That's the first indication that the campus is designed such that you are continually intercepted by Art (with a capital A) that demands that you stop, look, and think--or at least, wonder--about what might seem a strange (or unexpected) arrangement of shapes. Which begs the question: what's expected, or not strange, anyway?

Two blocks down is the Koch Centre for Integrative Cancer Research (now how's that for Big Money/Business meets Big Science?) which has a public gallery that calls on walkers-by to peer into and under the microscope to wonder at the intricacies of cellular and molecular structures that challenge and stimulate this area of research.

Round the corner from the Koch Centre is what some students might see as the hub of student life on the campus: the Stata Centre. One side of this imposing building faces a shallow courtyard, all grey and silver, with what looks like polished fallen bullets embedded in the pavement, shaded by a series of low arcs--this is a memorial to the MIT police officer Sean Collier who was ambushed and killed by the two men later implicated in the Boston Marathon bombings. You are invited to sit on one of the rough stone seats and contemplate--how is it that memorialization of violence produces such stillness of mind?

You walk through the vaulted lobby of the Stata Centre, under the hundreds of paper birds in the lobby, waving aside the temptations of coffee and croissants, to emerge one level up, to look back at a structure that could have come out of a Crayola box, all yellow, orange and grey against a cloud-smudged blue sky. Modernity's bow to the postmodern imagination?

And then there is Jaume Plensa's Alchemist, located strategically across from the east end of MIT's big dome, his binary frame deep in thought, drawing us into the hollowness of a being surrounded by the abstract symbolism of science.

But only a few hundred yards away is the much more solid, much warmer, and somehow comforting sculpture of the Reclining Figure (Three-Piece Reclining Figure, Draped, by Henry Moore) that makes you believe--in something--despite your inclination to question--everything.

And back where I work, and watch, in the lobby of the MIT Media Lab, this tribute (captured here is one of a three-panel exhibit) to Marvin Minsky. You can find a better picture of this here.

The robots are here, but yes, so are we.

Wednesday, September 14, 2016

In the Garret, I ramble sometimes

My favorite image of the struggling artist in the proverbial garret is of the young Christian (played by Ewan McGregor) of Moulin Rouge, with that dramatic, sweeping view of Paris from his tiny room in which he wrote feverishly and scripted the grand tragedy of his life. The garret of my imagination draws from a small litho-print in my Hyderabad University office, a stylized view from (what must be) a writer's window, where books turn into buildings and line the roads with their hardbound spines. It reminds me of the Merchant-Ivory-Jhabvala rendering of A Room with a View, some mythical space in Rome, or maybe southern France, where one had no responsibility other than to be creative (whatever that means).

And now here I am, in my own garret--not  quite so impoverished, not quite so struggling (well, writers and academics always struggle), and--need I say it--not quite so lost in love! But it certainly fits the definition of garret, the top floor or attic space of a house (which, the online dictionary tells me, is usually "dismal" and "unfinished"). My charming two-room apartment, sloping ceiling and all, is indeed in the top floor of a late nineteenth century historic home in the township of Somerville--one of the earliest established towns in New England. My gracious landlady tells me that she cannot undertake any renovations to the exterior of the house without permission from the local Historic Council. There are sepia-tinted photographs of old Cambridge on the walls, and a fire escape (modernist addition!) that could double up as a surreptitious entry for a teenager looking to sneak into the house after curfew.

Like most attic apartments, it is hot in the summer, and I suspect, it will be drafty in the winter, but it affords me a nice view of the tree-lined sidewalk and strains of Sunday song from the Haitian church at the end of the street. I am careful not to tread to heavily on the creaking floorboards, and shoo away the aroma of Indian spices from my occasional cooking, hoping they will lose their pungency as they waft down the stairs.

Anyway, so here I am, in my comfortable garret, and I think about all those writers and thinkers and the spaces they worked in, those feverish hours bent over paper, their pens scratching away furiously or fingers flying across keyboards.  Shakespeare, rumor has it, wrote primarily in taverns, so that he could save on candles and firewood. We know of at least one contemporary bestselling author who produced her work in cafes. Others have created their own retreats, within their homes or outside, where they go to get away from the intrusions of the material world and listen to their own words. You can look at some of them here

There is so much emphasis on the setting for creative work. You have to have just the right kind of room, the right kind of desk, writing implements...and in the absence of this, you work yourself into a list of excuses until, one day, you find yourself in that space, in that setting... and are left with no option but to hunker down and work. Speaking for myself, I had long given up waiting for that perfect setting. Surrounded as I am by a no-nonsense family that refuses to indulge my excuses, responding instead with: "If you really wanted to write you would do it--anywhere," or "You're just afraid to commit yourself to the task--so you keep finding ways to not begin." You get the drift. Somewhat less eloquent that the inimitable Hemingway, who is supposed to have said: "There is nothing to writing. All you do is sit down at a typewriter and bleed."

The best advice I ever got in terms of writing came from one of those same no-nonsense members of my family. "Just sit down and do it, ma," she said. "Don't go to bed unless you've written your 400 words for the day." And that's the only way I've been able to get anything done. You just sit there and force your mind to yield the words--one at a time. Some days are better than others, and my words spill over each other and somehow make meaning, and I'm not watching the word count. Other days I type, re-type, delete, move chunks of text here and there and then wipe the screen clean, and then begin all over again, all the while feeling like those 400 words are a mountain I am just never going to scale.

Of course, there's writing and there's writing. With academic work, it is the thinking that takes a long time and by the time I'm ready to write the words come fairly easily. But with the other kind of writing--the so-called creative kind--the thoughts are there but they lack form and structure and it is the words that give them that. Finding those kinds of words is hard.

It does feel a bit like bleeding. Invisibly.

Friday, September 09, 2016

Square Jammin'

Okay, so I'm still a tourist here in Cambridge (Massachusetts, not UK). Or maybe we all are, or should be, at some level. If this means walking about with a sense of wonder, with a willingness to risk direct experience rather than busily building bubbles around ourselves, then it's a good way to be. It means never allowing the familiar to become boring; it means seeing things from new angles each time, allowing different shafts of light to illuminate a well-known object so that new angles, new curves, new hollows and depths, are revealed.

The objects in my current environment are far from having acquired the familiarity of home. And I suspect I will leave at that point when they begin to settle into lines that are strange no longer. Practically every day, I run into things that delight, intrigue, and make me stop--sometimes to look more closely, or to ask questions about, or to simply watch and take it all in.

The lunch hour on the margins of Harvard Yard on Shabbat eve had six young people playing Latin music while breaking students and faculty and visitors like myself made long lines at the food truck of their choice: on offer were Gourmet Vegetarian, Bon Me (sandwiches) and Asian Fusion. An oversized chessboard stood waiting and tweedy professors munched on jalapeƱo chips and listened to the almost operatic singers. Others make their way, more seriously, to pay the traditional obeisance to the statue of John Harvard and--not to forget--record it on their cellphone cameras. This involves a surprisingly Eastern-seeming custom of touching the left foot of Harvard (and hoping that some of the ivy splendor will rub off on to their hands). A little boy stands on the steps of the Widener Library holding a crayon-inscribed placard that reads "Class of 2030" and his mother quips: "We can dream, right?"

Late on a Friday evening a masked band plays a vibrant beat on Davis Square as young parents watch their younger children jump and clap, happily out of tune. Stooped men and women on a walk from the nearby Elder Care facility sit quietly enjoying their ice cream, remembering a time when they, too, skipped to a faster beat.

As I take the subway escalator up to the street, homeward bound myself, a street dweller holds out the free weekend paper, asking for spare change and, in an inexplicably cheery voice, wishes the commuters a good weekend.