Harnessing The Healing Power of Stories

 

Health Story Collaborative Blog

Harnessing the healing power of stories...

Marie's Healing Story Session: Living with Stage 4 Colorectal Cancer


All of our Healing Story Sessions are videotaped, and some of our participants have courageously agreed to have their videos shared on our website. Here, you can watch Marie share her story of living with Stage 4 Colorectal Cancer. Marie participated in our first Healing Story Session in March, 2014. Her story is humbling, moving, and funny. She has amazing perspective, wisdom and a terrific sense of humor. It is worth a watch!



The Arnold P. Gold Foundation Supports Healing Stories Sessions

In June 2014, Liz, an oncology social worker living with stage 4 ovarian cancer herself, invited 20 of her close friends to witness her story of illness and healing at her Healing Story Session. In a recent guest blog post for The Arnold P. Gold Foundation, Dr. Annie Brewster and Dr. Jonathan Adler, Co-Directors of the Healing Story Sessions Program, wrote about Liz's session. 


 In a world where today's time-pressured medical system often overlooks the stories of people's lives, Dr. Brewster and Dr. Adler are working to develop new therapeutic modalities that draw upon the age-old power of stories.


Check out the post here at humanism-in-medicine.org


IMG_0925Annie Brewster, MD is the Founder and Executive Director of Health Story Collaborative, Inc, Co-Director of the Healing Story Sessions program, and a practicing Internist at Massachusetts General Hospital in Boston. She is also a patient, diagnosed with MS in 2001. Her work is dedicated to keeping the patient voice alive in healthcare and to harnessing the healing power of stories.


Jonathan M  Adler - head shot

Jonathan Adler, PhD is the Chief Scientific Officer of Health Story Collaborative, Co-Director of the Healing Story Sessions program, and an Assistant Professor of Psychology at Olin College of Engineering in Needham, Massachusetts.  His research focuses on the relationships between identity development in adulthood and mental health.

 

The Arnold P. Gold Foundation works with healthcare professionals in training and in practice to instill a culture of respect, dignity and compassion for patients and professionals.
 


Reframing The Clinical Encounter: Chief Concerns

By Annie Robinson



Dr. Rita Charon, founder of Narrative Medicine, cares deeply about how patients’ stories are told. She believes there are two ways healthcare providers can tell the stories of their patients: with data derived from test results and quantifiable statistics, or with deep understanding of that patient’s experience, derived from generous listening.

 

Rita observes: “I’m sure many patients have the experience of that first kind of storytelling: ‘They don’t care who I am, they just care what my A1C is.’ But then in the very same place, there’s this other kind, where (a healthcare provider) is not only able to but is rewarded for really coming to understand how to listen to the deeply personal, affective, emotional aspects of not just living, being sick, and of dying.”

 

But how can providers incorporate this second kind of storytelling into their daily medical practices? Ronald Schleifer and Jerry B. Vannatta, co-authors of The Chief Concern of Medicine: The Integration of the Medical Humanities and Narrative Knowledge into Medical Practices, offer accessible suggestions for clinicians who want to prioritize their patient’s story in their caregiving.

 

Changes in how providers offer and patients receive care can start with simple but significant technical aspects of storytelling in healthcare: how trainees are taught to write. Usually, hospital notes begin with a patient’s “Chief Complaint”: “My asthma is back” or “I have chest pain” or “I fell and hurt my back.” Schleifer and Vannatta recommend in their book that in addition to a “Chief Complaint”, providers also ask for their patient’s “Chief Concern” - which is markedly different.

 

This year, for the first time, Rita asked the four medical students she mentored to do just that, and was pleased to see that they took the task of registering a chief concern very seriously. Even at this quite technical level, it is clear “how much it matters how these young kids - 2nd year medical students - are learning how to tell stories.”

 

The contrasts evident between the complaint and the concern in the examples Rita’s students recorded struck me as nothing short of poetic:

 

Chief complaint: “Belly pain.”

Chief concern: “I hope my cancer’s not back.”

 

Chief complaint: “Relapse of pancreatic cancer.”

Chief concern: “Is it now that I’m going to die?

 

Chief complaint: “Shortness of breath.”

Chief concern: “Suffocation.”

 

Chief complaint: “Shortness of breath.”

Chief concern: “I really don’t want to be in the hospital again.”

 

Chief complaint: “Transfer from the coronary care unit.”

Chief concern: “I don’t understand what has happened to me.”

 

Chief complaint: “I was not making any sense and was confused.”

Chief concern: “I want to take care of my grandchildren.”

 

It deeply impresses me how easy yet meaningful it is to inquire about a patient’s chief concern. It opens up the possibility of a different degree of trust between patient and provider. But just what should students do when they hear their patient’s chief concern?

 

“Tune in!” Rita declared. “Notice the lived experiences and implications of an illness serious enough to get put in the hospital. And because we (ask about the chief concern) right up at the front, (providers) are able - maybe - to pay attention to the deep existential fears.”

 

Rita feels real optimism about this technique: “It’s not like the doctors don’t want to do this, it’s just that they’ve never been asked to...” or shown how, until now, through narrative medicine training.

 

Narrative medicine cultivates the development of foresight, the ability to tune in and pay attention. As evident in Rita’s stories about generous listening and asking patients about their chief concern, it’s sometimes the seemingly small gestures that can make all the difference in how clinicians hear, and care, and practice being with.

 

But it’s important to remember that caring for patients’ stories isn’t easy. Rita acknowledged the challenge in what she asks her medical students to do: “It’s not just: ‘Oh yeah, don’t forget, get the patient’s story…’” It’s about more than just “getting the story”. It’s about “rolling up your sleeves, and getting yourself in a position of confronting the situation’ the patient lives.” Even Rita admits: “There are a lot of things I learn that I wish I didn’t know.”

 

I imagine how overwhelmed caregivers must feel when confronting the unsanitized, scary, disheartening reality their patients live. But increasingly, providers are discovering that to bear witness to a patient’s whole story, they can better understand and thereby meet their patient’s needs.

 

Rita says, when it comes down to it, “You don’t need somebody who’s going to put their hands in front of their face and say ‘Don’t tell me about that...’ You don’t need that. You need someone who will appreciate the magnitude of what you’re talking about. And who can then maybe do something on your behalf.”

 

We all need our magnitudes to be acknowledged and honored, because we are not only conglomerations of numerical data, we are people with complicated, unique, and profound stories.

 

More about Rita:


Rita Charon, MD, PhD, is Professor of Clinical Medicine and Executive Director of the Program in Narrative Medicine at the Columbia University College of Physicians and Surgeons. She directs the Humanities and Medicine curriculum for P&S and teaches literature, narrative ethics, and medical interviewing. She also has a primary care practice at Presbyterian Hospital.

TEDxAtlanta Talk: https://www.youtube.com/watch?v=24kHX2HtU3o

 

More about Annie Robinson:

 

I have experienced the powerful effect stories have in healing as both a patient and as a caregiver in the role of a full-spectrum doula, which involves supporting women through abortion, miscarriage, and fetal loss. As a graduate of the Narrative Medicine master's program at Columbia University, my driving mission in life is to elicit, honor, and attend to stories.

 

I am the Assistant Director of the Center for Narrative Practice, which provides people with deep critical training in how stories work and trains them to apply this knowledge to everyday life by using narrative practice, creative arts, and the study of story. I also curate an oral narrative project called “Inside Stories: Medical Student Experiences”, for which I interview medical students about their experiences in medical school with the intention to provide a platform for their own person healing, self-realization and empowerment through the sharing and receiving of personal stories.

 

I am honored to serve as Program Officer for Health Story Collaborative. As such, I conduct interviews, edit audio stories, and write a blog posts that profile remarkable individuals committed to honoring and making use of stories in health care. If you or someone you know might be interested in being interviewed, please contact me at healthstorycollaborative@gmail.com.

 


Our Newest Written Story

Journeying: Towards Healing, Wholeness, and Authenticity


By Allison Levine


 My mysterious symptoms began when I was 11 years old.  I liked to play soccer, create art projects, and ride bikes with friends to White Hen to buy candy.  I was the student council class president.  I was also as pale as a ghost, barely weighed 70 pounds, and continually missing school because I was sick.  High fevers, headaches, and chills—that was my deal. The pediatrician repeatedly told my parents, not me, that I had the flu.  After almost a year of recurring flu, my parents wondered if I was being misdiagnosed and sought a second opinion.   I remember being nervous as I overheard phone conversations my mom was having, asking friends for pediatrician recommendations, wondering what was wrong with me.  



After one visit, this new pediatrician didn’t think I had the flu, admitted he didn’t know what was wrong, suspected migraines, and sent us to an allergist to do sinus testing.  And so my medical journey began.  From specialist to specialist, until an infectious disease physician referred us to a gastroenterologist for a colonoscopy and, there, my atypical presentation of Crohn’s Disease was discovered.  Crohn’s Disease causes inflammation in the lining of the digestive tract, it can be painful and debilitating, and while there are therapies to reduce symptoms, there is no known cure. 

 

 By the time my Crohn’s was diagnosed, I’d missed a ton of 6th grade and the one month session of overnight camp that I’d already packed my duffle to attend: T-shirts, shorts, sneakers, swimsuits, beach towels, extra long sheets for the bunk beds, tennis racket, cassette player walkman and headphones, berry flavored lip gloss, and carefully selected stationery to write friends and family at home.  I remember the morning of the camp send-off.  It was a warm, clear, sunny day.  I went to breakfast at McDonald’s with my mom, my younger brother, camp friends, and their parents. Then, we all went to the camp bus stop at the local high school.  While my brother and my camp friends loaded the greyhound buses, buzzing with excitement and nervous energy about spending a month away from home, I stayed back with the parents and waved goodbye as they drove away.  Since we were surely going to figure out “what’s wrong” soon, I planned to go to camp late.  I should have known when I started taking out “just one shirt” from the royal blue duffel bag on the hallway floor that I would soon be unpacking the entire bag.  That summer I watched the fun from the sidelines at home.  Through letters from friends, I heard about camp sneak-outs, gross cafeteria food, and which boys the girls liked.

 

 Twenty-one years later, now 33 years old, I am just beginning to realize the impact living with Crohn’s has had on my life, the force it has been in shaping my identity.  Watching the fun from the sidelines, as I did on that summer day when the camp buses drove off without me, is a metaphor for how I spent a lot of my time growing up.  Beginning at age 12, I needed to take medication three times a day.  Staying healthy meant restrictions in my diet.  No carbonation, no fake sugar, no drinks from a straw, no chewing gum, no popcorn, no greasy food, no, no, no...  Living with Crohn’s meant no drinking, which meant when friends began experimenting with alcohol, guess who was always stone cold sober and, as soon as I turned 16, the perpetual designated driver?  Me.  Then in college, everyone drunk, having fun, enjoying life.  Not me.  All nighters?  I couldn’t do it.  I stayed up most of the night with my boyfriend who was in town during the fall of freshman year and I ended up in the hospital the next day with a high fever and chills. I was left behind when my parents and brothers vacationed in Mexico when I was in college.  They didn’t take me because they didn’t want me to get sick from the food or water. To be fair, my parents planned to travel alone, but my brothers wheedled their way in on the trip.  Even though I asked to join, I was told “no.”

 

 The thing is, the missed opportunities for fun, the regimented lifestyle, and the premature responsibility, none of that includes the actual medical interventions: The surgeries, hospital visits, blood tests, IVs, colonoscopies, physical exams, medications, allergic reactions to medications, blah, blah, blah…  While I have a difficult time remembering my medical experiences in their entirety, I do remember certain pieces vividly.  I remember being in the hospital, a male African nurse trying unsuccessfully to put an IV in the top of my skinny little left hand.  I was sitting in a chair next to my hospital bed.  He was standing over me in his scrubs.  I felt helpless, paralyzed with pain and terror.  That was probably close to 20 years ago. A million times since then, I’ve been poked, without flinching.   I worked in a Neonatal Intensive Care Unit; I’ve seen blood, guts, vomit, and babies who are no longer living.  Yet, if I’m in a medical setting and hear the voice of a man with an African accent, I stop dead in my tracks and feel like my heart has momentarily stopped beating. 

 

 In every medical experience since that fateful IV, I plowed ahead—strong, focused, determined, and without complaint.  I pushed my body to the limit, training as if for an athletic event, but really the event was life.  If my doctor said six weeks post surgery I could begin more intense physical activity, on the 6-week mark I incorporated jogging into my walks, turned jogging into running, and soon was back where I started or stronger.  I’d puke in the trashcan on the side of my high school’s track after running just one mile before evening tennis practice.  Even though I can run for miles in the morning on an empty stomach, I couldn’t run after having eaten breakfast and lunch.  My digestive system wouldn’t allow it.  I coordinated with college professors to have coursework sent to me while I recovered at home from surgery my junior year.  I went to the gym to walk on the treadmill during the polar vortex because I needed to get my legs working again.  I went to yoga when my hands were numb and did poses on my forearms rather than my palms because I needed to use my body in a positive way.  I needed to feel what it was like when my body was working for me, not against me.  I needed to be in charge of my body, make it do what I wanted it to. 

 

 My family fundraised for the Crohn’s and Colitis Foundation of America (CCFA) for 15 years and I volunteered for CCFA for over a decade.  I created the Pediatric Gastroenterology Family Assistance Fund at University of Chicago Hospital.  I’m proud that I didn’t allow Crohn’s to stop me from achieving, from leading an active, full life.  I’m proud of my philanthropic endeavors and the ways my family and I gave back to the GI community.  I wouldn’t change any of that.  I just wish I’d stopped for a minute to be more present in my own experience.  By never allowing the space to realize or fully understand that my experience was not typical, I think I did myself a disservice. 

 

 Several months ago, I started seeing a psychotherapist for the first time in my life, ironic, since I’m a clinical social worker.  I sought this support for a personal, important, yet non-Crohn’s-related reason.  My draw to therapy had to do with me needing to feel alive, to feel passion, excitement, connection, desire, and understanding… to feel whole.  I needed to grieve and I was overflowing with anger.  I felt panicked and sad about what I had missed and what I felt I was still missing.  I wanted to feel really alive, like heart-pounding-out-of-my-chest alive. 

 

 However, when I began to talk, so much of what I shared came back to living life with Crohn’s.  I couldn’t believe that I’d missed how Crohn’s influenced not only how I navigate my life, but who I am, and how I act.  Here I was, no longer operating in survival mode, no longer dissociating, finally aware of my own body, and my feelings, thoughts, and emotions were pouring out of me like a fire hydrant, burst open, flooding the street.  It was as if my Crohn’s flare during my recent pregnancy and the traumatic delivery that followed had opened the floodgates of awareness of 20 years of experiences of growing up with Crohn’s.

 

 I had serious health issues while pregnant with my second baby.  Reflecting back, I see that the ailments came on in a fashion akin to that of my initial Crohn’s symptoms 20 years prior.  The “we don’t know what’s wrong with you” experience was similar as well.  The chills, headaches, and fevers during pregnancy paled in comparison to the morning when I woke up with no ability to move any joints of my lower extremities.  None.  My symptoms were a mystery—a blood clot?  MS?  Just Crohn’s?  My world-renowned GI doctor was stumped. “You’re a bit of a black box,” he said.  I sat on the crinkly white paper on the medical exam table and asked, “So what’s the plan?”  My doctor’s response was “We’ll figure something out.”  In my mind, that loosely translated into “We have no freaking clue.”  I was terrified.  It was unclear if I’d: A) Need another bowel resection B) Need to try a new medication that “increases the risk of getting a rare brain infection that usually leads to death” or C) Wait for the doctors to figure something out.  I didn’t share it with anyone at the time, but during that pregnancy, I felt I might die, or that I’d potentially live with a severe disability, never able to go running, do yoga, or play at the park with my kids again. 

 

 With so many drugs pumping through my body and so much illness during pregnancy, I was also secretly scared that my baby wouldn’t be healthy.  There was nothing to do except hope for a good outcome and wait for delivery.  After 15 hours of un-medicated labor, a drastic drop in my blood pressure, and baby’s dangerously low heart rate, I was rushed to the operating room for an emergency c-section.  I felt the wind blowing against my face as a slew of doctors and nurses raced my bed down the corridor through the automatic doors and into the bright lights.  My heart began to pound, my breath became rapid, tears began to flow, and panic set in.  I was acutely aware of what was happening, yet, simultaneously feeling in an out-of-body-experience.   At the last second, a voice of one of the medical professionals from behind me on my left yelled, “Heart rate’s back up!  Cancel the Crash (emergency c-section)!  Cancel the Resus (neonatal resuscitation)!”  I had a brief moment of relief, but medical distress continued and a c-section followed just minutes later.  While in the recovery room holding my brand new baby, swaddled in the white fleece hospital blanket, wearing a little blue knit hat, I cried.  Not happy tears because my baby was healthy.  I cried because I failed.  My body had failed, again.

 

 Until now, I have not shared the intimate details of this all-consuming process of self-reflection and self-discovery that began for me many months ago.  I have been scared others wouldn’t understand, that they would judge.  I had, however, confided in Rebecca, a dear friend of mine.  Rebecca is soft-spoken, wicked smart, a talented mental health professional, and knows trauma.  She was also my roommate in graduate school, and has taken me to the ER, stayed with me overnight until my parents arrived, calmly rubbing my legs, my body shivering and shaking with chills, my fever dangerously high.  During one of our many phone conversations, I was teary, struggling, trying to make sense of my life as if I was working to solve a physics problem, yet didn’t have enough information and didn’t know the right equations.  She responded, “Al, this is your journey to find your authentic self.”  I laughed.  Leave it to Rebecca to name this humbling, painful, and often lonely process something so pretty, so succinct… so… accurate.  Rebecca’s description resonated with me. 

 

 I continue along my journey towards healing, wholeness, and authenticity.  I am starting to integrate the fragmented parts of myself, the decades of living in a regimented, need-to-stay-healthy way.  I’m beginning to acknowledge the medical trauma that my physical body endured as threats to its very being, but to which my conscious awareness was not connected.  I am peeling back layers of emotions I never recognized and feelings I never felt.  I am having revelations about decisions I made and paths I chose.  There is so much.  I can’t contain it in my body and mind anymore.  I need to share it so that I’m not carrying it alone.  As I bring to my full awareness this new, yet old, information, I continue to be stunned.  And each time I find a new piece of clarity along the way, the most interesting thing happens: my body gets warm, yet feels chilled, my lips feel tingly and chapped, and I feel feverish… just like I do almost every single time a Crohn’s flare is beginning.  


Reflections Of A Harvard Undergraduate Premedical Student

By Lauren Claus


Sometimes it feels as if the path to becoming a practicing physician is a path of deferral. As a premedical student and sophomore in college, I have seen my peers engage in a variety of activities that are required for medical school but are not directly applicable to life as a physician. My colleagues have reviewed physics for the MCAT (Medical College Admissions Test), studied the nuances of organic chemistry, and adopted leadership roles by managing large organizations and events.

 

As a premedical student myself, I am often tempted to think of life as a physician as the final attainment of a routine that matters. Finally, instead of focusing on how to fulfill particular requirements and prepare for a standardized examination, a physician can find treatments for patients and help make scientific breakthroughs. Instead of being attuned to the competitive nature of an application process, a physician is able to reflect on how to best relate to their patients with care and empathy and how to best work with other members of their health care team.

 

However, when I ask physicians for advice or insight, they often describe how the practice of medicine is not as ideal as premedical students might project it to be, and has its challenges just as the premedical experience has challenges. For instance, an emphasis on efficiency makes it difficult for physicians and other health care professionals to adequately spend time listening to their patients. The commercialization of the medical field can also make work difficult, and even disillusioning, for physicians.

 

Understanding these realities provides a new perspective for premedical students: an awareness that the practice of medicine is imperfect. Students should expect to be faced with imperfections, such as timing constraints and a frustrating inability to listen fully to patients, during their later years as a physician. Armed with this knowledge and perspective, premedical students know more about what they can expect, and perhaps even change, in the field of medicine.

 

They can also face the path to medical school with a fresh perspective. Because I have realized that the practice of medicine, like the premedical experience, contains elements that do not directly relate to becoming a better physician, I am less frustrated by the process. Instead, I am more focused on how to make my premedical experience translate into a learning experience that will help me become a more engaged physician.

 

More deeply, health care professionals' efforts to fill in the gaps of modern medical practice inspire me and resonate with my idealistic impulse to contribute to the medical field. I hope to be involved with medicine because I hope to help others restore their health, whether they are struggling physically, emotionally, or spiritually. Although a major component of doing this as a physician is of course providing medicine, I am also interested in less traditional ways that health care providers can facilitate emotional healing.

 

Health Story Collaborative is one such example. By providing a space for patients to share their stories with others, Health Story Collaborative creates a sense of community. Patients who are hesitant or unable to leave their homes to attend a support group can still participate. Moreover, some patients may prefer the opportunity for privacy while bringing up uncomfortable or distressing topics with others. Health Story Collaborative also provides more opportunity than a support group for less spontaneous conversation that can more accurately reflect the nuances of a patient's experience. Patients spend time discussing and crafting their narrative with a physician, and the final written or audio transcript can capture more of their experience than quickly delivered thoughts. 


Efforts such as Health Story Collaborative provide patients with emotional comfort, and also broaden the practice of medicine. By facilitating such efforts, physicians can do more for their patients and feel less constrained by the medical field's commercialization and haste. They can more deeply understand the patient experience, and become more empathetic and better prepared to provide advice that is relevant to specific challenges that patients face. This inspires me as a premedical student and indicates that the practice of medicine is more meaningful and more involved than I could have expected. 


Rita Charon: Teaching Doctors to Listen

By Annie Robinson


Dr. Rita Charon, founder of Narrative Medicine, is concerned with how medical students are being taught to write about their patients. “Patients have ideas about how their stories get boiled down into abbreviations and numbers and acronyms. A 78-year-old grandmother becomes a ‘diabetic with an A1C of 11.2.’”

 

As an internist who also mentors medical students at the Columbia College of Physicians and Surgeons, Rita coined the term “narrative medicine” and launched the Program in Narrative Medicine at Columbia University in 2000. Her goal is to help healthcare professionals improve communication and collaboration with their patients, and to bridge the gap between the humanities and the sciences. At the heart of her mission lies the belief that effective healthcare “requires the ability to recognize, absorb, interpret, be moved by, and act on the stories of illness.” Her definitive book Narrative Medicine: Honoring the Stories of Illness has changed the course of uncountable lives, and steers the narrative medicine movement.

 

I first encountered Rita at my orientation to the Narrative Medicine master’s program in 2011. She emanated a quiet tenderness as she stepped gently up to the microphone - but soon into her speech she burst forth with impassioned exclamations, rallying the troop of incoming students to her cause to bring together the worlds of healthcare and literary scholarship. As deeply attentive as she is demonstrably passionate, Rita never fails to make an impression. Stories organically unfold when she speaks, on any subject.

 

When we conversed recently, she told me a story that illustrated exactly what narrative medicine is trying to do. This past spring, four second-year medical students were placed under Rita’s tutelage. She met with them twice a week for over two hours at a time, observed them interviewing patients and doing physical exams, and carefully read what they wrote about their patients. At the beginning of the semester, they shared with her the first formal written notes for the medical charts of a patient of theirs. One student submitted a summary of a young male patient with HIV, Hepatitis C, and a life-threatening combination of diseases on the AIDS ward - but how he wrote it dismayed Rita:

 

“The first five lines of what he wrote was written almost entirely in abbreviation, with a lot of numbers and percentages. There were barely any words. And this was the opening introduction for anyone who was going to take part in the care of this gentleman, this was the introduction to this gentleman’s situation! I got really upset, because the student was being taught - and expected - to write in this telegraphic, reduced, non-linguistic way.”

 

Rita chuckled as she shared with me the “slightly snarky” comment she offered him in response: “It’s a good idea to get in the habit of introducing a description of a patient with some English.” To her surprise and delight, he really took her suggestion to heart.

 

Several days after offering that comment to the student, she observed him performing a physical exam and interview with a new patient. The patient was a young man with a serious infection and a new cancer, who had previously had initial success with an earlier cancer treatment. But now, he and all the doctors knew that there was nothing more than palliative care to offer him at this point: the cancer could not be reversed or treated.

 

Rita recounted: “So I’m just sitting, watching. The student invited the patient to tell why he had come to the hospital, what the situation was, and then the patient, very honestly, graphically, without holding back, told the student and me what he was going through in his dying.”

 

“He told us about the life he had lived, which had caused his illness. He told us about his heroin use. He told us about his alcoholism. He told us about his promiscuity. He told us about his violent past. He told us about his regrets, for some of the ways he had lived part of his life. He was very, very frank. He said, ‘At this point, as I face my dying, I want to do as much as I can to give back.’

 

“And this student was so humble, and respectful. The only thing he did as a listener was to remain in the conversation as an active participant. He didn’t just sit by passively and let the patient tell whatever he wanted. He was engaged as a listener - he knew how to signal that he was actively listening. Every now and then he would kind of ask a question, to signal that he was actively listening. It was extraordinary. And this was the student who had written those technospeak sentences two days before!”

 

When Rita and the student spoke afterwards, it became apparent that the significance of the encounter really resonated with him. “He realized exactly what that patient had given up. He was as moved as was I to hear this open, honest, generous ‘Here’s what it’s like to be dying...’ Isn’t that something?” Rita and her student were both left in awe of the “remarkable, generous donation” the patient offered by entrusting them with his story.

 

As the student sat at the bedside of the 45-year-old dying with a belly full of cancer, receiving the man’s stories, he gave the patient the opportunity to give something back. At the end of the visit, the dying man said: “I appreciate the opportunity to impart some of what I’ve learned.” Rita witnessed how being given the chance to tell his stories “added some dignity to his life. He was able to give this young, inexperienced medical student some idea of what it’s like to be dying.”

 

Sometimes the seemingly subtle acts of witnessing and sharing story are the most powerful treatments, for both the patient and the physician.

 

More about Rita Charon:

 

Rita Charon, MD, PhD, is Professor of Clinical Medicine and Executive Director of the Program in Narrative Medicine at the Columbia University College of Physicians and Surgeons. She directs the Humanities and Medicine curriculum for P&S and teaches literature, narrative ethics, and medical interviewing. She also has a primary care practice at Presbyterian Hospital.

 

TEDxAtlanta Talk: https://www.youtube.com/watch?v=24kHX2HtU3o

 

More about Annie Robinson:

 

I have experienced the powerful effect stories have in healing as both a patient and as a caregiver in the role of a full-spectrum doula, which involves supporting women through abortion, miscarriage, and fetal loss. As a graduate of the Narrative Medicine master's program at Columbia University, my driving mission in life is to elicit, honor, and attend to stories.

 

I am the Assistant Director of the Center for Narrative Practice, which provides people with deep critical training in how stories work and trains them to apply this knowledge to everyday life by using narrative practice, creative arts, and the study of story. I also curate an oral narrative project called “Inside Stories: Medical Student Experiences”, for which I interview medical students about their experiences in medical school with the intention to provide a platform for their own person healing, self-realization and empowerment through the sharing and receiving of personal stories.

 

I am honored to serve as Program Officer for Health Story Collaborative. As such, I conduct interviews, edit audio stories, and write a blog posts that profile remarkable individuals committed to honoring and making use of stories in health care. If you or someone you know might be interested in being interviewed, please contact me at healthstorycollaborative@gmail.com

Harnessing The Healing Power of Stories: Dr. Annie Brewster at TEDx "Grit"


In April 2014 Dr. Annie Brewster, Founder and Executive Director of Health Story Collaborative attended the TEDx Fenway event "GRIT" which sought to honor individuals who had the GRIT to persevere and realize their aspirations. 


Dr. Brewster presented her own TEDx talk, "Harnessing The Healing Power of Stories" which appeals to medical professionals to take time to truly listen to their patients and acknowledge the most essential element of healing: the stories of peoples' lives.



Writing As Process: An Interview With Sarah Baker

By Annie Brewster:

 

Last week, I interviewed Sarah Baker, a Cambridge based writer, mother and independent radio producer, about her recent article, “Unraveling My Childhood Asthma: Did motherhood Cure it?”, published on WBUR’s Commonhealth Blog on May 9, 2014. I was drawn to this article because it so beautifully portrays the complex process of integrating illness and loss into one’s life, and how writing can be a part of this.

 

As Sarah puts it, writing this piece was like bringing her interior world and her exterior world together in public, perhaps for the first time, and this was a powerful experience.

 

Read Sarah’s piece, and listen to the audio recording of the interview. Sarah is eloquent, honest and brave. She has lessons to teach all of us.

 

Stay tuned for her memoir!

Listen to audio here:

Photo credit: Susan Lapides


Transcript of Dr. Annie Brewster's interview with Sarah Baker:


Dr. Annie Brewster: So I'm here today with Sarah Baker, freelance writer, mother and a independent radio producer. I wanted to talk with her about an article that she recently wrote called "Unraveling My Childhood Asthma: Did Motherhood Cure it?" which was published on WBUR's Commonhealth Blog on May 9th. I love this article and I think it really is right along the lines of what Health Story Collaborative is about; trying to harness the healing power of stories, so I wanted to talk to you about the process of writing it and what came out of it. I guess as a first question, I was really struck in reading it by all the different roles that asthma played in your life. It set you apart, it called attention to you in life when you might not have otherwise gotten attention, it brought out "sassy pants" which I loved and it was also a constant in your life in the midst of what was otherwise chaotic. So it served many roles, both positive and negative, it seems. I'm wondering if you can speak to that and the different roles that it played in your life.

 

Sarah Baker: I agree with everything you just said. I was a kid who went through a lot of trauma early and my body responded in a way that maybe my brain didn't know how to. I couldn't breathe. I think my asthma was a reaction to the stress. My mother had died, we moved all the time, and I lived with all of these different families. That is very stressful. Maybe not being able to say out loud, "I hate this" or whatever my feelings might have been. I wheezed and that was where my stress went, to my asthma. I read Joan Didion's essay, "In Bed," about her struggling with migraines and it made me think about my asthma and I started to write the piece. It was through writing that I began to notice how my asthma had been a constant in my life, how it had been representative of the stress. This is somewhat new to me--where I've thought about my asthma from this perspective, as a forty-six year old. As a child I was just trying to survive.

 

Annie Brewster: I'm really interested in what you said about that you never really consciously thought about this until you started to write about it. I'm really fascinated with the process of storytelling and how that sort of helps move somebody from one place or another. So, can you speak to the process that you went through in writing this and how that helped you and what it meant then to put it out there in a public way and get feedback on it; what that was like for you and what did it take to get to a place where you felt ready to take that on as a writing project?

 

Sarah Baker: I remember a number of years ago when I started writing, a friend of mine who is a successful writer said, "write what's raw" so I always try to write what hits a chord in my heart. So writing about my childhood and writing about my mother's death is what I tend to write about. This was the first time I wrote about my asthma and it was hard to write about it because I don't have a lot of memory. I had to interview my Dad, I had to do some research, and I had to relive the trauma. I just kept working at [the story] and sometimes felt a little sick after writing but I just kept working. I usually write ten drafts before I show it to any one. I showed it to my husband and he reacted positively. I showed it to a class that I was in and to my teacher and they responded positively. I thought maybe I've struck something here. Then the story sat in my computer for a year; it did. And it was after I started taking a class about the book I'm working on that I decided to send it out. Maybe the year allowed it to percolate so it didn't feel as scary. Once it was out there, the feedback was great. People came out of the woodwork. People that knew me as a kid, that knew me when I had a collapsed lung or people who knew me as a kid who didn't know any of this. They were all very moved by the piece. That was very powerful. My mother-in-law said, "It’s like you've come out"...my interior world had been different from my exterior world; people might see me as this successful or...successful is the wrong word but kind of, um...what is the word I'm looking for?

 

Annie Brewster: Together…


Sarah Baker: Together... you know, with a lovely house and a great husband and wonderful children and all of that; I have a wonderful life but I had this crazy history that people didn't know about so all of a sudden they know this side of me. That has been really powerful.

 

Annie Brewster: How come people didn't know about that part of you? What kept you from sharing it before this essay?

 

Sarah Baker: Well, I think that people at the time knew about it because they could see me being sick but then I think I just put everything, all of these pieces of me, on the back burner and I just kept moving forward, trying to almost erase the past. I think that is probably what happened.

 

Annie Brewster: Do you feel like there was ever any shame in it?

 

Sarah Baker: That is a really interesting question. I don't know. Maybe it felt like a weakness or something that I had to put aside? I never even brought it up. I didn't even think about my asthma really until I was writing this piece, thirteen years after my asthma went away. It's only now that I'm beginning to think about my relationship to my asthma and why I might not have talked about it for all of those years. I don't know.

 

Annie Brewster: It's always a really slow process that we don't necessarily know that is going on or sort of coming into a place where you're ready to write about it or integrate it into your life but, can you name sort of what might have changed in you that made you feel like "alright, I'm ready to write about it"? Or was it all unconscious?

 

Sarah Baker: The Joan Didion piece gave me permission. I thought, "she wrote so powerfully about something that nobody sees"—migraines--and even though I don't have migraines, I don't suffer from them thankfully, the story gave me sympathy for people who do suffer. I know a lot of people who suffer from migraines. The story made me think differently. I felt with my asthma...I feel when I write any of these personal stories...I have to get over a hurdle at the beginning but then I begin to feel, we are all struggling in our own way, whether it's with loss or trauma or illness or whatever it might be so if I can tell a story, maybe a few people out there in the world can say, "Yes, that was me, too." A number of people responded to my story on the Commonhealth blog, on my blog, and NPR ran it on their blog with their own stories of childhood asthma. It just kind of adds to the conversation of life. I used to feel ashamed about writing these pieces. "Who's going to care?" "Why would anyone care about my life"? But I’ve learned that these stories do resonate. I'm drawn to personal stories whether in books, memoirs or articles... I thought, "Why shouldn't I be a part of this dialogue?" I have a kooky story. I think I can tell it with a little bit of humor or something that will make people keep reading. So, I’m just going for it.


Annie Brewster: Do you feel like writing about it has changed your relationship with other people?

 

Sarah Baker: Absolutely. Even though I’d written it a while ago, when it came out it was very raw for people. One friend, for instance, stopped me on the street. She's a therapist, and she said, "I'm going to think very differently about the kids I treat that have asthma...a lot of it is from the stress of their homes." Because I wrote the story a while ago, by the time it was published, I was closed off to it. But for people who had just read it, it was still very raw. It was hard for me sometimes to know how to respond because the enthusiasm and the kindness and the overwhelming support was so powerful. I didn't always know how to respond. I just tried to be gracious.

 

Annie Brewster: Did your children know all this about your asthma and your life and the struggles and your mother's death before you wrote this or was it new for them to read it, or did they read it?

 

Sarah Baker: They haven't read it yet. I'm wondering when to show it to them. They’ve heard bits and pieces of my story but they haven't read any of my writing yet. I was just thinking today about when I would show it to them. I showed it to my nephew, my brother's son, who is a junior in college. He responded so thoughtfully. I think the article helped him understand his father's story, and helped him understand me. I will show it to my kids when I feel they're ready.

 

Annie Brewster: What do you think it would take for them to be ready?

 

Sarah Baker: Well I don't want to scare them. I don't know...maybe I am underestimating them. I have a fourteen year old and an eleven year old. Maybe after this interview, I will go home and show it to them and see what happens.


Annie Brewster: That would be interesting. I'm interested in the motherhood piece and I was really moved by your story of your mother's illness and her death and how that affected you. I'm wondering if you can speak to the interplay between that loss and that pain before the loss and your asthma. What was the interaction? Stress you named already but was there more that...it's all so woven together and complex I know, but how do you think those things played off each other?

 

Sarah Baker: I'm only beginning to learn about that. But I think they absolutely played off each other. In my piece, I quote Senesa who said he’d had a lot of illnesses but asthma was the worst because it was like “rehearsing death.” It’s intense to think about that. I had asthma before she died. She got sick when I was three and I had my first attack when I was eighteen months old so I had already had it. But to have my mother die and then to have this disease that's "rehearsing death" where I couldn't breathe; there has got to be a link there. I don’t understand completely. I am still exploring it.

 

Annie Brewster: Yes. I was struck by the image of the two of you sort of in parallel, in different hospitals, but across the city from one another, so apart but together in an interesting way.

 

Sarah Baker: Yes. It must have been impossible for my father who had a full time job in the navy and had to commute between these two hospitals. My mother was at John's Hopkins because they were doing cutting edge research on brain tumors. She actually lived a lot longer than they expected... and then I went to Bethesda Naval Hospital across the state of Maryland. We lived in Virginia. Sometimes my Dad had to drive over 100 miles a day going between the two hospitals. Right before my mother died, my father was in the hospital for an ulcer. That's not surprising. I had been in the hospital for an asthma attack and my mother was actually, she had been at home and was actually put in my hospital, so she could be near everybody. That's when she died. But I never saw her.

 

Annie Brewster: I'm just sort of talking off the top of my head here but, in hearing you speak and sort of thinking about this image of "rehearsing for death" and her death, do you think in any way that your asthma worked to keep you sort of connected to your mother in a way? Or does that not feel like it fits?

 

Sarah Baker: I'm learning a lot about that now and I think absolutely. I think when you lose a mother or a parent early in your life and you don't go through the grieving process, I think you become very loyal to the sadness and I think there is a part of you that unconsciously, because you're little and you don't have the words for it, says, "I'm going to stay loyal. I'm never going to be as happy as you were.” And so, yes... I absolutely think that when you lose somebody when you're little, you make these silent pacts with them to stay loyal to the sadness, to stay loyal to what they went through...to keep them on a pedestal and to hold them in this special place in your heart.

 

Annie Brewster: Do you think sort of unconsciously maybe you would have felt like getting better and not having asthma anymore would be a betrayal of sorts?

 

Sarah Baker: It’s risky to say any of this because I did have asthma and I wouldn't want to take away from anybody that does have asthma. But, I had a lot of trauma and maybe this was one of my ways of staying loyal to her. I don't know. This is all speculation. It's just curious now as an adult when I don't have asthma and it went away so quickly once I had stability...I'm just now looking at these questions and wondering, what went on really?

 

Annie Brewster: I think you're right to say that you don't want to take away from anyone who has asthma, and I was wondering that and I was going to ask you, what is your thought on what role two individuals play in creating their own illness and to what degree are we responsible for that? I know that's a big question and it's really complex but...

 

Sarah Baker: I don't have any authority to answer that question... I can only tell my own story. This is all speculation. My parents were both smokers; it was a time when people smoked. We lived in a house with wall-to-wall carpeting and you know, it could have been that my environment changed, I don't know exactly and I'm reluctant to say that we create our own illnesses. I'm just looking at my own circumstances and wondering. My son has asthma but it's minor and we manage it. He's never been hospitalized. Maybe, my asthma would've been like his. Maybe I would've had it but it would've been milder.

 

Annie Brewster: I absolutely agree with you, I am very reluctant to say that anyone causes anything but I think it's a complex interplay between genetics, the predisposition that we have and our environment and our stress and our psychosocial circumstances and all of that. So, of course it's impossible to say. And sometimes I think there is just bad luck and that's a factor. Can you say how maybe having lived through both asthma and your mother's death may have changed the way you mother today?

 

Sarah Baker: Both absolutely inform my parenting They inform everything I do, not consciously maybe; but, I know I have a fear of loss. Also, I had such a crazy childhood that I’ve always wanted to make sure that my children have a happy, joyful, stable childhood. I've made a lot of choices to make sure of that--sometimes even putting motherhood in front of other choices that I might have made.

 

Annie Brewster: Are there parts of you that you love that you feel came to you because of these difficult experiences in your life? Things that you're proud of; strengths that have come out of that?

 

Sarah Baker: Well, I do think that I have resilience and grit (two buzzwords these days). I wouldn't wish my childhood on anyone but I did have to learn how to cope and I learned how to be around all sorts of different people and circumstances. They're positives and negatives to that. I think it made me flexible but then it kind of...you reach a point where you become inflexible because you're tired of always trying to accommodate other people. So, there are positives and negatives.

 

Annie Brewster: I love the image of you're singing and the sort of juxtaposition of the asthma and the singing and the different ways of using your lungs and your breath. I thought that was very beautiful. Can you tell us more about your singing and how that feels to be taking voice lessons?

 

Sarah Baker: In the beginning it was unbelievable what a bad singer I was. I was inhibited; I couldn't even get the sound out. It took a long time. After four to six months, my teacher realized that I was probably a little tone deaf so then she did some ear training. Slowly, I've gotten more comfortable and I've been able to access the different parts of my breathing and my voice. Recently, she told me I could sing soprano. What a shocker!

 

Annie Brewster: Do you feel like somehow, I mean I'd be afraid to take voice lessons, it takes a lot of courage. Do you trust yourself more now? Is allowing yourself to sing...does it have anything to do with trust or letting go? Can you speak to that?

 

Sarah Baker: Absolutely, it has to do with finding your voice literally and feeling that your voice matters in the world and that you're not embarrassed by it. My first year of singing lessons was about quieting my inner critic. The one that says, "No one wants to hear this." Same thing with the writing, you know. My singing teacher was so gentle and kind. She just kept saying, "Don't criticize yourself, and just sing. I want you to sing loudly and I want you to just go for it and don't think about anything other than that." It was through that process, of just going for it and being completely uninhibited, that the sound started to come out.

 

Annie Brewster: That's amazing. What made you decide to take the voice lessons?

 

Sarah Baker: There are so many opportunities to sing in the world and I was never singing. I lacked confidence. I wanted to sing at school assemblies, or birthday parties, or wherever, and feel good about it. So, I just went for it.

 

Annie Brewster: Do you think that writing about all of this and in a public way has changed your relationship with your father? Is his still living?

 

Sarah Baker: Yes, he is still living

 

Annie Brewster: And your brother, you said you had a brother. Do you have any other siblings?


Sarah Baker: Yes. I have a brother. I also have a half brother and half sister.

 

Annie Brewster: So, has writing altered those relationships?


Sarah Baker: Yes. I think for my brother who has his own business and works very hard, I can write these stories and send them to him. He can relive with me some of this trauma that we just had to run as fast as we could away from. My writing has made me closer to him. I’ve given my dad some of my pieces, not all of them. I'm worried that he might feel hurt by them. One piece I gave him, he responded by saying, "Well, I actually didn't think that paragraph was accurate." It’s all perspective. It was accurate for me and so, I'm sensitive about showing things to him because I'm protective of him but, I also...It's through my writing that I've gotten to know my own story. I'm not blaming anybody at all. I'm not trying to judge them. I'm just trying to tell the story. I'm getting more confident with showing him my work and not worrying. I have some essays, though, that nobody has seen except for classmates or very close friends. I worry that people will be offended by them.

 

Annie Brewster: Tell me about the memoir you're writing.


Sarah Baker: I had written a bunch of essays like the asthma story and realized I had about forty-five pages. In them, I kept telling the story of my mother and her death over and over but in different ways. Then I read the book "Wave" which is a spectacular memoir by Sonali Deraniyagala. She's Sri Lankan. She lost her whole family in the 2004 tsunami. It's an unbelievable book. After I read it (it took me two and a half hours and it was painful to read but it was so powerful), I thought she's done an incredible service for the rest of us. I learned what she went through, and how she came out and I thought, "Maybe I can write a book that is a legacy of loss." The story of a little girl who has lost her mother and her father who, as I say was "out to sea" (because he was out to sea, literally), and who lived with her relatives - how I carried that loss into my adulthood. I want to tell a story of how we carry loss and what happens when it's not tended to properly.

 

Annie Brewster: So, it's a giving back of sorts.


Sarah Baker: Yes.


Annie Brewster: You articulate - you say reading "Wave"-I want to go out and read it now-it tapped into something in you and it's that giving back piece that I'm interested in. What do you think, I mean it moved you, but what else did it offer you? Can you articulate that?

 

Sarah Baker: First, it is absolutely beautifully written so it is a great example of writing and structure. But more than that…she lost her parents, her children, and her husband and I just don't know how anybody could ever survive from that. She paints this picture of how Elizabeth Kubler Ross in many ways was wrong. I don't know if wrong is the right word but The Five Stages of Grief, you don't pass through them very easily. They are messy and they are morphing and in this book you see that. The other part of the book that was powerful for me was that she had a real community to support her. She had friends and relatives there to take care of her and it took a long time. It took a long time to even think about her family that she lost. And then, how she very carefully pieced it back together with memory where all of a sudden she could go back to her house in London and all of a sudden she could begin to think about her husband and then she could begin to think about her parents. That’s the way grief works. It doesn't happen all at once; it comes gradually and in an agonizing way. She describes it so beautifully and accurately. I wouldn't say that at the end of the book that she, you know you never recover, but she's living her life and she's written this beautiful book and she's helping people in the world who have experienced loss. It is brave of her to have written the book.


Annie Brewster: Absolutely. I also think it is really helpful to see an example of the truth, which is that it's messy, it's gradual; you don't always know that you're going through the process when you're going through it. It's not clean and I think that is freeing to other people who are in the midst of it.


Sarah Baker: Absolutely, yes. A family rents her parent's house, for example. They move in and she can't stand that they're living there. She goes to their house at night and rings the doorbell and runs away. She torments them. This is a woman who is a professor at Columbia now, I believe. I mean she's incredibly educated and that is where grief took her. It took her to terrible depths. She drank. I mean she had a real drinking problem for a while. She really scraped hell; she scraped the bottom. Maybe it was what you asked earlier about being loyal to death, to the deceased. Maybe she thought, "I'm not going to have a better life than you are. I'm going to live an equally bad life." Maybe she was unconsciously creating a hell for herself to show her loyalty to the people she loved and lost.

 

Annie Brewster: That's well said. Also, I think it's so helpful to see the movement; that you can hit those depths of horribleness and then move out of it and I think that is always so helpful to see when you're in the midst of something. That you're not going to get stuck there, that you're going to pass through. So, do you feel like "Sassy Pants" is back?

 

Sarah Baker: "Sassy Pants"... Yes! I feel like Sassy Pants is... It is kind of sassy to publish an article about my asthma I think and send it out to the world. You've got to be a little bit sassy to put yourself out there like that. Maybe you have to be a little sassy to sing, especially when you're going for those high notes. So, yes, I think Sassy Pants is back and she's breathing well.

 

Annie Brewster: I love thinking about this image, again, the singing, I just think it is such a joyful thing and it is so freeing. I love this image of you swaying with the music, with the sound bursting out and it feels really hopeful. I'm wondering, do you feel like you're at some sort of transition point where you're more free to dream about the future and what it holds and letting yourself deserve these things...does that feel accurate? And if so, what are the things you're dreaming about? What lies ahead for you?

 

Sarah Baker: I'm getting there for sure and I think I'm dreaming about being able to... I never even thought I'd be able to write; I didn't think I knew how. I learned how to write in my forties. I took a grammar class. I started at the beginning. I had been an editor, I think I have an ear for language. But, I had never written a story before. It must be about my forties--you start to look at your life differently and see what you want to get done. I have just gotten comfortable thinking about myself as a writer and actually believing that my writing resonates and that it is worthwhile to write and publish. So, my dream is to write this book, to be able to work through all of these different chapters of my life that are hard to work through and figure out a way to tell it so that maybe my story can help other families or other children out there who also suffer from a loss, like the one that I did. That's one dream. My other dream is to be able to be present--to be able to feel the goodness that is all around me because I'm absolutely surrounded by goodness but I don't always feel it. So my dream is to really see what that is like—to feel present all of the time. That would be amazing.

 

Annie Brewster: Awesome. I'm excited to read your memoir. Thank you.

 

Sarah Baker: Thank you.

 

Stories as Social Justice

By Annie Robinson

 

I have experienced the powerful effect stories have in healing as both a patient and as a caregiver in the role of a full-spectrum doula, which involves supporting women through abortion, miscarriage, and fetal loss. As a graduate of the Narrative Medicine master's program at Columbia University, my driving mission in life is to elicit, honor, and attend to stories.

 

I am the Assistant Director of the Center for Narrative Practice, which provides people with deep critical training in how stories work and trains them to apply this knowledge to everyday life by using narrative practice, creative arts, and the study of story. I also curate an oral narrative project called “Inside Stories: Medical Student Experiences”, for which I interview medical students about their experiences in medical school with the intention to provide a platform for their own person healing, self-realization and empowerment through the sharing and receiving of personal stories.

 

I am honored to serve as Program Officer for Health Story Collaborative. As such, I conduct interviews, edit audio stories, and write a blog posts that profile remarkable individuals committed to honoring and making use of stories in health care. If you or someone you know might be interested in being interviewed, please contact me at healthstorycollaborative@gmail.com.

 

For my first piece, I spoke with Dr. Sayantani DasGupta, a former professor of mine devoted to raising awareness in her students and in society about how to approach and honor illness narratives, and the intersections between narrative, health, and social justice.

 

 

Stories as Social Justice: An Interview with Sayantani DasGupta

 

“Stories are not the end goal, they’re not a treasure we dig up, they’re not a simple repository of facts, but rather, they’re a process. And listening to them is an act of social justice.”

- Dr. Sayantani DasGupta

Anyone who considers stories as central to healing swoons when listening to Dr. Sayantani DasGupta. I certainly did the first time I heard her speak, as my professor in an “Illness Narratives” class I took in Fall 2012 as a graduate student in Columbia University’s Narrative Medicine program. Sayantani’s passion for the power of story in medicine - which twinkles in her tone of voice and glitters in her eyes - is infectious.

 

Sayantani trained in pediatrics and earned a Master of Public Health, and now devotes her time to being a professor, writer, speaker, feminist, and mother. One of the things that most excites Sayantani is thinking about how gender, race, class, and other social factors influence how we tell the stories of our bodies.

 

In a recent conversation we had, she expressed concern that physicians tend to see stories as just “nice” instead of essential: “Physicians sometimes think, ‘Well, okay, that’s nice, but is it really necessary?’"

 

“Yes!” she insists. Through their stories, patients become contextualized in the wider system to which they belong. As Sayantani puts it, patients “are both a unique individual in this universe, and they are also not alone. They’re situated in a family, in a culture, in a community, in a social system, in a political system, in a labor system.” By listening to stories, physicians come to appreciate their patients as more than just parts and isolated disease carriers; they can see how the health of individuals is shaped by matters of social justice.

 

And Sayantani believes that when physicians hear patients’ stories, they are not only equipped to offer better care, but they are able to make major changes in healthcare: "The greatest potential for narrative work in healthcare is the ability of renewed attention to story to illuminate structural injustices in medicine as a profession, and healthcare as a system.”

 

She advises physicians to consider how "broader issues they’re thinking about, like health access, continuity of care, accurate diagnosis of treatment, long-term follow-up, are connected to narrative. If we simply think of narrative as something that feels good and is nice...then we rob it of its real power.”

 

It’s not only important that physicians listen to patients’ stories, it’s important how they listen. Sayantani believes that in order to provide the best healthcare, physicians must first engage in honest self-examination.

 

They can ask themselves: “What am I bringing to the table? What are my prejudices and expectations? What do I think about this person? Is it that they remind me of my Aunt Millie? Do I really hear their story well? Or do they frighten me and I don’t hear their story well?”

 

She also encourages physicians to listen with a sense of their own limitations, something she calls “narrative humility” - that we can approach stories without the assumption that we're going to always necessarily "get" all of it:

 

“The folks we take care of are not necessarily going to be just like us - they are very likely not going to be like us - and their stories are not something that we can become necessarily competent about.”

 

A medical student Sayantani once taught who had Multiple Sclerosis wrote a beautiful piece about her experience that captures the essence of narrative humility. The student wrote:

 

"As a patient, I urge every doctor to try and place him or herself in the patient’s shoes. Don’t stand by the foot of the bed and power over your patient. She feels small already. Take a minute, sit down, listen.”

 

She then offered a small piece of advice to medical practitioners reading her essay: “Try to understand. Realize that you will never understand. Try anyway.”

 

I shivered as Sayantani recounted these words, slowly and with reverence, and nodded in fervent agreement when she told me why she felt so moved by this simple but poignant piece:

 

“She’s talking about the practicalities of how to listen, but also about the inequality inherent in one person being ill, vulnerable, naked, and frightened, and the other being full of knowledge. It really brings home the social justice role and the healing role of storytelling in our work. Yes, we try to put ourselves in our patient’s shoes, but we have to be conscious of power. We also have to be conscious of what we bring to the table.”

 

The words echoed in our conversation, and still do in my heart:

 

"Try to understand. Realize that you will never understand. Try anyway.”

 

More about Sayantani:

 

Sayantani DasGupta originally trained in pediatrics and public health at Johns Hopkins University, and now serves as a core faculty member of the Program in Narrative Medicine at Columbia University. She also teaches in the Health Advocacy program at Sarah Lawrence College. In addition to being a prolific writer, she is a nationally recognized speaker on issues of gender, race, storytelling, and medical education. At Columbia, one of the classes she teaches is a Narrative, Health and Social Justice seminar, and she co-chairs a faculty seminar of the same name.

 

Website: http://www.sayantanidasgupta.com/

Blog: http://storiesaregoodmedicine.blogspot.com/

Response to Healing Story Session #1

Our first Healing Story Session on March 5th, 2014, was a great success. Approximately 30 invited guests gathered to listen to LJ and Marie, two amazing women living with cancer, share their stories. Read more about this Session on WBUR's Commonhealth Blog and on Marie's blog Adventures in Spiritual Living



 

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