Seven Reasons Why Doctors Write

January 4, 2009 at 1:05 pm

A pair of round glasses on a sheet of writing, Wellcome Library, London, Photograph 2004

Commentary by Tony Miksanek, M.D., family physician, short-story author, and coeditor, Literature, Arts, and Medicine Database

As a profession, physicians are a remarkable group of writers. What doctors lack in good penmanship is more than compensated for by their skill in penning stories and poems. Their literary accomplishments are even more impressive given a lack of formal training in the art of writing. Only a few physician-authors have MFA degrees. Most medical students do not major in English or literature while in college. Doctors become talented writers the old-fashioned way. They practice. They also teach themselves via voracious reading with attention to style and technique. They occasionally attend writing workshops.

It helps that doctors are immersed in stories. If the business of medicine is taking care of patients, then the currency used in the transaction are the narratives of illness told by patients and received by physicians. Doctors spend a good chunk of their professional lives listening to stories. It's only natural that doctors would retell versions of these tales or craft their own new ones. All the elements of a story are readily available to any doctor: plot, protagonist, antagonist, setting, dialogue, and theme. Physicians witness struggle - disease, death, and suffering - all the time. Writers call it conflict. Physicians regularly observe cures, acts of heroism, and even miracles. Writers refer to it as denouement. Doctor-writers have oodles of experience to tap from. They have a rich pipeline of poignant images, unforgettable language, colorful characters, and vexing irony in any single day. In addition, physicians get plenty of practice writing and editing office notes, consultations, and histories & physicals.

There is an elite roster of physician-writers for readers to drool over. Anton Chekhov, John Keats, Arthur Conan Doyle, William Carlos Williams, A.J. Cronin, W. Somerset Maugham, and Mikhail Bulgakov are a few names that immediately come to mind. There are also many recognizable physician-writers including Michael Crichton, Robin Cook, and Frank Slaughter who may not get the love (critical acclaim) but certainly get the money (commercial success). There is a sizeable but unquantifiable group of practicing physicians who engage in creative writing without fanfare. These doctors take their writing seriously whether they consider it a hobby, diversion, or passion. I estimate that as many as 4-7 percent of all practicing physicians in the United States are currently working on a poem, story, or novel.

With hectic, unpredictable, and stressful jobs, why do doctors want to write? Given the demands and responsibilities associated with a career in medicine, why do so many physicians make time to write? The short answer is that doctors write for many of the same reasons that non-physicians do: They feel compelled to write. They have something to say. They love words and language. They are excited by the process and gratified by the result. They are inspired.

Here are seven special reasons (ranked from most important to least important) why doctors write:

1. Therapy - Physician heal thyself. Nothing promotes healing like writing a poem or short story or even a single glorious sentence. Writing helps a doctor get things off their chest in a much more productive way than yelling at a nurse, ranting at a patient, or being grouchy at home. Poems and stories written as a form of therapy are easy to spot. They have a confessional quality.
2. Exploration - Doctoring is hard. Creative writing is an opportunity for physicians to make sense of what they do. Stories written for the purpose of searching sometimes have themes that focus on medical ethics and boundary issues.
3. Sharing - Doctors can pass along knowledge and experience by writing in clever and vivid ways. Humor and compassion provoke memorable moments in literature. A perfect example is The House of God by Samuel Shem.
4. Joy - Writing is fun. Okay, maybe not always - rewrites, editing, and the evil "writers' block." At some level (the spark that begins the project or reading the finished manuscript), there is euphoria. Would you settle for glee?
5. Honor - Writing allows physicians an opportunity to memorialize patients and colleagues. These literary works feature a fictionalized version of a character or an amalgamation of a few people. Creative writing can immortalize someone. P.S.: Doctor-narrators also reap literary longevity.
6. Atonement - Doctors make mistakes. They sometimes behave badly. They have regrets. Stories and poems can be part of their penance. Think "Brute" by Richard Selzer.
7. Notoriety - Let's not lie to ourselves. Who among us would not want to be a rich and famous author? I don't know any doctors who would turn down a Pulitzer Prize, National Book Award, or an appearance on The Oprah Winfrey Show. Good luck with that.

Thoughts For The Season

December 14, 2008 at 4:01 pm

Fireworks exploding in the night sky over Newcastle

Commentary by Felice Aull, Ph.D., M.A., editor of this blog and of the Literature, Arts, and Medicine Database.

A few thoughts as this blog editor takes a holiday break until after the New Year:

In honor of the season, we post an image of celebration, yet we do this with some ambivalence. When so many in this world are suffering it seems unseemly to engage in celebration. If we are lucky, we have family and friends to provide emotional support in difficult times, and live under governmental systems that are reasonably responsive to the needs of their constituents, but many do not have that luxury. It is the task of medical humanities endeavors to draw attention to injustice and to debate solutions to the persistent problem of man’s inhumanity to man.

APeace.

The Seven Doctors Project: Creative Writing As Inspiration And Intervention

November 30, 2008 at 12:50 pm

A pair of round glasses on a sheet of writing, Wellcome Library, London, Photograph 2004

Commentary by Steve Langan, author of a collection of poems, Freezing (New Issues Press, 2001) and a chapbook, Notes on Exile and Other Poems (Backwaters, 2005); executive director of ALS in the Heartland in Omaha, Nebraska; teaches in the University of Nebraska MFA in Writing Program and is working on a Ph.D. in literature and medicine.

A "Typical" Night

I just returned from a meeting of the Seven Doctors Project, a writing group I started at the University of Nebraska Medical Center to see what would happen if I encouraged mid-career physicians to begin, return to, or sustain projects in creative writing. I pair each willing doctor with a local writer who serves as his or her mentor and guide. Tonight, even I feel like writing. I usually come home from work, check e-mail, check it again, worry about stuff I couldn't finish at work, eat dinner, pitch in on the dishes, worry about not writing my dissertation, yell at my son for not getting his homework done, walk the dogs with my wife, watch The Daily Show, then crash. But not tonight. Dr. M., who works in the E.R. and tends the grapes in his small vineyard when he has time, presented two poems, a weak tamed-down narrative about being stuck for two long days on jury duty and a stunning lyric, his version of the Garden of Eden, which included an expected mention of the loss of innocence (though it had a "nice twist," another doctor mentioned, that made it "seem fresh").

"Have we lost our innocence?" his colleague, the internist Dr. K asked. "Is it because we know too much about the secrets of the body?"

We flowed into and through this conversation. Nothing is off limits in this space we've established. Trust has been developed. With the doctors in the room, we reviewed some of the stark facts of their specialized training, and one of the doctors said, "I think we are people who used to be more fun." We had a lot of laughs tonight, too. One of the participants admitted to having a crush on one of the writers! This is intimate work, revealing, potentially life changing. I've been trying to deny its power, but it's no use. The evidence has been collected. Even in our tucked away classroom on this undernourished campus in our middling state, the lives of many of the doctors have changed, it seems, as a result of being part of this writing project. That's what they keep telling me. And all I'm asking the doctors to do is to write poems and stories (their mentors help in a variety of ways, including emphasizing the need for revision) and submit them to the group during their designated week for all of us to discuss. We don't dismiss "reflective" work, but it's not our aim. We hold each other to trying to make the best poems and stories we canausing the aesthetic principles that are at the core of teaching and learning creative writing as our foundation and default. That's why the writers have been indispensable. Further, if "therapy" comes out of the writing project, that's not our fault. Whatever energy or therapy or good feelings the doctors receive from being part of the projectadoing this writing in earnest and turning it inashould be attributed to the rigor that the writers have helped enforce and the high standards that we seek and help maintain.

The Players

I've worked with a public health doctor who just earned her MFA in poetry, a convert; a plastic surgeon with a background in music composition who has become fearful of writing and so dedicated herself to writing poetryaand submitted a poem that included a stanza about how she only worries about her patients; an oncologist who loves the band Genesis and puts on his headphones once a week and jams on his Hammond organ; a transplant doctor who has completed one novel and has another in progress; a psychiatrist who wanted during college to be a poet…who wrote his first poems in many years, including a poem about his relationship with his powerful father; an OB/GYN who started by wishing to narrate incidents from his career…and began to consider some of the opportunities for metaphor that fiction allows and demands; the Chief of Infectious Diseases, who has dedicated about an hour during his workday to sitting in his office writing poems; the concerned internist, who taped a poem she loved onto the door of her officeathen, five minutes later, fearing being labeled "creative," tore it down; and the E.R. doc, who recalled for us when life used to be more fun. Their average age is 52. If we're not being generative in mid-life, Erik Erikson said, we may lapse into despair. I even invited a university lawyer, who in the early Sixties helped edit an avant-garde literary journal, to participate. We don't discriminate. These men and women have become as real to me as characters in an engrossing novelawhich means, to me, they have more roundness and substance than many of my acquaintances, family members, colleagues and neighbors. They've been telling us more. It seems, for the members of the Seven Doctors Project, a lot depends on, using a word coined by Samuel Beckett, saying and writing what is "ununsaid."

The Inner Voice

Through literature, and especially through the lyric poem, one gets to hear the "inner voice." It becomes necessary, even addictiveaan antidote for many of us to the language of the academy, politics, government…and church, school and the workplace. I've encouraged mid-career doctors to take time out of their busy lives ("Busy little me," one of the doctors referred to himself in his poem) to indulge the inner voice and work to place it on the page. They say writing makes them "happy" and gives them "energy"; they can't wait until next week. Confronted by the power of poems and storiesatheir own and othersathe doctors have been forced to pause to make a variety of evaluationsaabout themselves and their profession, primarily. They've developed friendships with their mentors and other members of the group. Some of the doctors say it's nice to have something to talk about other than work with colleagues. They see each other in the halls and chat about the poem they're working on for next week. Poetry has become a secret handshake. And it has resumed its original place, as agent of inspiration, for the doctors and the writers. Writers learn over time to achieve effects (which is not the same as being driven to make something new because you have to, because you have no other choice). So it has been inspiring to the writers to watch the doctors revel in the deep thrill of the new.

The Background; Mentorship

When I had the hunch and presented the idea to my advisor, I figured the doctors would hate the project and start squirming in their Gucci loafers. Distracted doctors, their beepers hemorrhaging, and all of them late for class because they couldn't resist billing one more hour. Even if they hung in there, I assumed they would present themselves as irritating showboats and know-it-alls unwilling to accept the writers' suggestions. Instead, I've developed deep affection for each one of the doctors, all of whom have worked hard to improve their work and participate in a conversation that has not always made sense to them. The subtext of creative writing theory and practice is "freedom." The quest for originality is necessary and a movement toward the sublime. Further, ambiguity has bearing in medical diagnosis, it seems, but is not something one frivolously rolls around in. Making the instant correct decision about a situation is king. After a long day, it was fun to watch the doctors start to delve into the text in front of them…and make an instant and simultaneous collective decision in response to the questions the writers began to ask them about what they were reading. Whoa! we frequently cautioned them. Let's take a little time here to think of all the possibilities, okay!

At this point, deep into phase two and assembling participants for phase three of the Seven Doctors Project, even I can't really deny its genuine effects. From observations, interviews with my subjects, responses to assessment questions and word of mouth, the project has helped and inspired my subjects at work and at home. We keep being congratulated for the project, and we keep congratulating ourselves. But maybe it's just a placebo, I keep thinking, or a niche that we could've filled with woodworking. Sure, the writers are wonderful, gifted and helpful, but I know all of them well enough to know some of their insecurities. They aren't publishing enough, they aren't smart enough, they'll never finish that story, collection of poems, novel. A writer's well-honed inner voice repeats, I'm a fraud, an imposter, a dilettante.

The project allows the writers to have a deadline for new work (the writers submit during the same week their "student" submits), but it's more than that, really. How often do any of us get to show doctors what we can do? The writers get to turn the tables on the doctors, and the doctors not only get to wonder what it's like to live more fully in the realm of the imagination, they get to practice doing this work, too, and play the role of the artist at least once a week and during time they squirrel away to work on their writing. Except for in one pairing, the writer-mentors have become heroes to the doctors. They wonder how the writers think. They've started to consider what the writers would say in response to the text they're working on…and revise accordingly. A recurring comment made by the doctors after their poems and stories have been workshopped is to give all the credit to their mentors.

In Conclusion

I'm not a social scientist or anthropologist or genuine medical humanities advocate or strict devotee. At this point, I'm not really an academic thinker at all. I've collected information and results on the study, but I'm just learning how to put it into serviceable academic order. And I'm certainly not a physician. As I shadow my subjects at work (partly as a way to learn more about the medical system but mostly to determine how they do their challenging work with such skill and creativity on a day to day basis), I'm sometimes asked if I want to become a doctor. My tongue in cheek response has been, "No, thanks. I have enough problems."

On the page and also in our conversations, I keep hearing, more than a minister or therapist or shrink might, the challenges of the doctorsathe mistakes they've made and witnessed, the things they wish they were able to accomplish, the holes in their lives. I feel privileged to have become their interlocutor, a role I've assumed, I think, because, really, what kind of threat is a poet to a doctor? Plus, as I said, I care about them. I really do. And I used to be afraid of doctors; I used to think, as a character in one of Denis Johnson's stories, says, that "Good health depends on the ability to fool doctors," I'm grateful to be able to present, along with my writer-colleagues, the practice of writing and the imagination as a kind of intervention in their lives. The doctors have taken the medicine; they keep following our orders. They continue to refer us to their colleagues, who call me to ask if they can join us at the next session.

Toward the end of class last night, I asked Dr. M. what it felt like to present his poems to the group. He told me he had been nervous all day. He was relieved, he said, after we finished talking about his poems. Which is a good outcome, because, though we admired his courage and the fact that he took a lot of time to do his work, one of the two poems wasn't very good at all. It needs a lot of work. He told us he'll try to revise it; his mentor reminded him that he's there for him. As we came to the end of our two hour gathering, time that members of the group keep telling me flies by, Dr. M. said, "You know what it felt like? I felt like one of my patients sitting on the table in a gown with my backside exposed." Oh, the joyato be that vulnerable again, even a little desperate and in need!

Borderlands: A Theme and Syllabus for Medical Humanities Teaching

November 14, 2008 at 3:48 pm

Hands reaching out

Commentary by Felice Aull, Ph.D., M.A.; Adjunct Associate Curator, New York University School of Medicine; Editor in Chief, Literature, Arts, and Medicine Database

Now that I’m semi-retired, an elective course that I developed and taught for fourth-year medical students is retiring with me. I'm writing about it here, in the hope that other medical humanities educators might wish to adapt it for their teaching — it was very well received by participating students and, I think, served a useful function. (I believe Linda Raphael has introduced a version at George Washington University School of Medicine). I taught "Betwixt and Between: Borderlands and Medicine," for seven consecutive years at NYU School of Medicine, modifying it somewhat each year. The idea of adapting a borderlands theme to an examination of the medical profession came to me while studying the work of Edward Said and Gloria Anzaldua as I was working toward a master’s degree in humanities and social thought (35 years after getting a Ph.D. in medical science). Below I summarize my motivation for developing the four-week course and elaborate on the syllabus. References annotated in the Literature, Arts, and Medicine Database are linked. Full reading references are listed alphabetically.

Representation, the arbitrary, ambiguity

In his groundbreaking book, Orientalism, Said argues that European discourse constructed a stereotyped Arab identity-the Arab as Other-that was ideologically biased, "regularized," hegemonic, and that enabled the Western imperial project.A Said noted that boundaries are to a great extent arbitrary. Later, Said wrote more generically of stereotyping and subordinating representational practices that must be resisted; he recommended that we should think critically by positioning ourselves "contrapuntally" — from dual perspectives - imagining ourselves as geographic boundary crossers or exiles. Said noted that boundaries are to a great extent arbitrary. It struck me that these themes applied to certain aspects of the institution of medicine and patient-physician interaction, and Bradley Lewis and I co-authored a paper that discussed these analogies (Medical Intellectuals: Resisting Medical Orientalism. Journal of Medical Humanities, Vol. 25, No. 2 / June, 2004, pp. 87-108). We argued that like Orientalism, medical discourse is the cumulative effect of selecting and reconstructing "the patient" and "disease" through the lens of the medical expert. Like Orientalism, medical discourse essentializes and reduces the patient, making empathic communication between physicians and patients difficult. We described how, in contrast to "medical orientalism," several physician writers cross personal and professional boundaries and think contrapuntally in their writing and interaction with patients.

I hoped that a contrapuntal approach to considerations of medical practice and the representation of individuals as "patients" might stimulate medical students to think "outside the box" about the institution of medicine, their future professional roles and interactions. Gloria Anzaldua’s provocative book, Borderlands/La Frontera, provided an additional perspective on borderlands that intrigued me in its applicability to medical education and practice, namely, that borders are often areas of dispute, ambiguity, cultural mixing, and even danger. Students could consider borderland areas of ambiguity in medical practices and training- an exposure that is often missing in their education. Fourth year medical students, being on the border of official designation as doctors, and having a perspective on their medical school experiences, seemed particularly suited to such an approach.

 

Features of the elective:

  • Scheduled as a "full-time" month-long course in February, with no simultaneous clinical rotations or other electives permitted.
  • Meets for 2.5 hours each of three mornings per week, for four weeks. Extensive readings, and study of online art and other web materials between sessions fill out the students’ time.
  • Two short papers or creative work that responds to the course subject matter
  • View and discuss a film on the last day of class

Week 1 topics:
How does the transition from student to professional (professionalization) occur: objectification of the body, responsibility vs. inexperience, instruction in "professionalism" vs. the hidden curriculum

Interaction between professional and personal life

Week 2 topics:
Perspectives on personal-professional and patient-physician boundaries
Narrative and empathy

Week 3 topics:
What is "normal": defining disease; social construction of disability; race and race-based medicine
Difference, rejection, Otherness
Medical uncertainty

Week 4 topics:
Illness as exile
Socioeconomic marginalization and illness

Week 1 : student/professional, personal/professional

Session 1. Introductory session uses poetry and art to introduce topics of cultural ambiguity ("Day of the Refugios" by Alberto Rios, "Original Sin" by Sandra Cisneros), borders between physician and patient ("Talking to the Family" by John Stone, "Open You Up" by Richard Berlin) distancing of the sick from their own health ("Across the Border" by Karen Fiser), isolation (Edvard Munch’s paintings Death in the Sickroom, The Dead Mother).

Arbitrariness of borders, the Other: one-page excerpt from Edward Said’s Orientalism.

Session 2. Objectification of the body as students become acculturated while learning gross anatomy through dissection. Anatomy of Anatomy in Images and Words by photojournalist Meryl Levin traces this process with photographs and student journal entries. Secret knowledge not previously available to the lay public. But now this knowledge is public: Gunther von Hagens’s Body Worlds exhibit.

Student response to gross anatomy course: poem, "Apparition" by Gregg Chesney. Intern trains herself to be detached: poem, "Internship in Seattle" by Emily R. Transue.

Historical perspectives on objectifying and learning from the body:

the dead body — Rembrandt’s painting, The Anatomy Lecture of Dr. Nicolaes Tulp)

the living body-Eakins’s paintings, The Gross Clinic and The Agnew Clinic

development of technology ("Technology and Disease: The Stethoscope and Physical Diagnosis" by Jacalyn Duffin)

Compare representations (paintings) of physician-patient interaction: The Doctor by Sir Luke Fildes and Picasso’s Science and Charity.

Patient’s perspective of objectification and loss of personhood: poem, "The Coliseum" by Jim Ferris

"Professionalism": Jack Coulehan critiques current curricula in medical professionalism and discusses the hidden curriculum. "You Say Self Interest, I Say Altruism."

Difficult transition and ambiguous boundaries when medical student officially becomes an MD. Playing the role, assuming the role. Short story by Mikhail Bulgakov, "The Steel Windpipe"and Perri Klass’s introduction to Baby Doctor and essay from Baby Doctor, "Flip-flops." Klass’s essays include reflections on the interaction of personal and professional life and lead into Session 3.

Session 3. Physician perspectives on the overlap and conflict of personal and professional life; subjectivity, objectivity

Poem, "Falling Through" by Michael Jacobs.
Essay, "Language Barrier". Elspeth Cameron Ritchie.
Essay, "Heart Rhythms". Sandeep Jauhar.
Story, "Laundry". Susan Onthank Mates.
Poem, "Monday". Marc J. Straus.
Poem sequence, "The Distant Moon, I, II,III, IV". Rafael Campo.
Essay, "Fat Lady". Irvin D.Yalom

Week 2: personal/professional and patient/physician

Session 1. Discussion of The Tennis Partner by physician-author Abraham Verghese. A memoir of the author’s personal relationship with a medical student whom he is teaching. It is also a reflection on cultural marginalization and physician vulnerability.

Power relations and physical examination:
Poem, "Physical Exam". David Watts
Essay, "Naked". Atul Gawande
Story, "The Use of Force". William Carlos Williams

Session 2. Narrative and empathy

Rita Charon and Jody Halpern’s theoretical arguments that narrative competence and empathy are necessary skills for proper patient care.

Rita Charon. "The Patient, the Body, and the Self", chapter 5 in Narrative Medicine.
Jodi Halpern. "A Model of Clinical Empathy as Emotional Reasoning" (pp.85-94) and
"Cultivating Empathy in Medical Practice" (129-138) in From Detached Concern to Empathy.

Empathy versus sympathy: poem, "Save the Word". Thom Gunn

Physicians write empathy (crossing boundaries):
Poem, "I’m Gonna Slap Those Doctors". Jack Coulehan
Poem, "Red Polka Dot-Dress". Marc Straus
Essay, "Sleeping with the Fishes". Kate Scannell
Essay, "Learning to Care for Patients, in Truest Sense". Abigail Zuger

Session 3. Patient perspectives on empathy

[first paper due]

Memoir excerpt, "The Patient Examines the Doctor". Anatole Broyard. Broyard’s brilliant commentary argues for emotional engagement, however brief, as beneficial to both doctor and patient — written before the current discourse on narrative and empathy.

Story, "People Like That Are the Only People Here: Cannonical Babbling in Peed Onk." Lorrie Moore. Highlights the divide between medical policies and practices, and suffering patients and their families.

Essay, "Search for wholeness: the adventures of a doctor-patient." Tamara Dale Ball. Dual perspectives from a medical student who has diabetes.

Week 3: health/illness

Session1. Medical uncertainty
From physician perspective: Atull Gawande (essay). "The Case of The Red Leg."
Poem, "Gaudeamus Igitur". John Stone
from patient perspective:"What We Don’t Know" (essay). Gail R. Henningsen.
Poem, "Routine Mammogram". Linda Pastan

Problematizing normality

Essay, "The Meaning of Normal." Philip Davis and John Bradley.
Article, "Defining Disease in the Genomics Era". L.F.K. Temple, R.S McLeod,S. Gallinger, J.G. Wright
Essay, "What’s Making Us Sick Is an Epidemic of Diagnoses". H. Gilbert Welch, Lisa Schwartz, and Steven Woloshin. New York Times, Science Times, January 2, 2007.
Poem, "Much madness is divinest sense". Emily Dickinson. (No. 435)
Poem, "Monet Refuses the Operation". Lisel Mueller

Problematizing concept of race and race-based medicine

"How Culture and Science Make Race 'Genetic’: Motives and Strategies for Discrete Categorization of the Continuous and Heterogeneous" Celeste Condit.

Session 2. Social construction of disability
The Rejected Body: Feminist Philosophical Reflections on Disability. Susan Wendell.
Section from the Introduction: pp. 1-5.
Chapter 2. The Social Construction of Disability.

Poem, "The Magic Wand" by Lynn Manning.

Look at brief video ad online: What if the world had been designed exclusively for people with particular disabilities/impairments?

Turning the Disability Tide: The Importance of Definitions. JAMA, Jan 23, 2008. V.299, NO. 3, pp. 332-334. Lisa Iezzoni, MD and Vicki A. Freedman, Ph.D. (Iezzoni is a disabled MD on Harvard faculty)
"Medical Care Often Inaccessible to Disabled Patients." National Public Radio
"Blocked", by Lisa Iezzoni. Health Affairs, 27/1, 203-209 (Narrative Matters), 2008)

Session 3. Difference, rejection, "Otherness"
Susan Wendell. The Rejected Body, Chapter 3. "Disability as Difference."
Also, pp. 60-69 on Otherness
Optional: Chapter 4. "The Flight from the Rejected Body."

Artists represent physical difference
Matuschka Archive
Alice Neel self-portrait
Sculpture of a pregnant artist who lacks fully formed limbs: Alison Lappert Pregnant (by Marc Quinn)
Artist Laura Ferguson investigates and aestheticizes her own body, deformed by severe scoliosis.

Meaning and discussion of "neurodiversity"
Introduction to Songs of the Guerrilla Nation: My Journey through Autism, memoir by Dawn Prince- Hughes

Week 4: exile, illness, marginalization

Session 1: Exile and illness
Said, Edward W. "Reflections on Exile." Said’s classic essay on characteristics of exile and what can be learned from the exile condition.

Robert Pope. Illness and Healing: Images of Cancer. Artist Robert Pope chronicles the experience of cancer treatment, based on his own treatment for Hodgkin’s disease.

Poem, "Surgical Ward" by W. H. Auden. Inability of those who are well to imagine and identify with those who are ill or injured.
Poem, "Emigration" by Tony Hoagland. Illness as loss of country, a journey with no end in sight.

Online Frida Kahlo art that depicts her dual selves; her loneliness, isolation, stoicism, and resistance:
Self Portrait Between the Borderline of Mexico and the United States
Henry Ford Hospital
The Broken Column
Tree of Hope
Frida and the Miscarriage
Essay, "On Being a Cripple". Nancy Mairs. Incisive well-written essay about language, perception, attitudes surrounding disability-based on her early years with multiple sclerosis.

Essay, "Liv Ullman in Spring". Andre Dubus. Severely and permanently disabled in an automobile accident, Dubus gives a detailed and poetic account of his fears, loneliness, and the human connection provided by an empathetic listener.

Session 2. Marginalization
Story, "From the Journal of a Leper". John Updike. A sculptor who has psoriasis is obsessed with his physical appearance. As his condition responds to treatment, his art and relationships deteriorate.

Essay by Rafael Campo. "It Rhymes with ‘Answer’ ". Campo details how social and cultural marginalization became imprinted on his physical self.

Watch online video showing internalization of racism (3:25 - 5min): "A Girl Like Me."

Memoir by Jimmy Santiago Baca. Prologue, and chapter 8 from A Place to Stand: The Making of a Poet. Baca chronicles his alienation and despair, conditioned by a family history of social and racial marginalization, and how in prison he eventually was able to develop a sense of self-worth through self-education, cultural pride, and writing poetry.

Lee, Don. "About Gary Soto." Background of poet Gary Soto‘s early life in a poor working-class Mexican American community. Cultural loss and marginalization.
"The Levee." Gary Soto.
"Hand Washing". Gary Soto.

Story, "newborn thrown in trash and dies." John Edgar Wideman. Inevitability of a premature death.

Poem, "How to Write the Great American Indian Novel". Sherman Alexie. A clever satiric poem about how whites co-opted Indian culture, resulting in the metaphoric and actual disappearance of a people.

Susan Power. Short story, "First Fruits." Using actual history of the first Indian who was educated at Harvard University, this imaginative story by an author of American Indian heritage brings American Indian culture and contemporary American majority culture into harmony and preserves the cultural identity of the Indian protagonist.

Session 3. Film

[second paper due]

I’ve used several films over the years, most recently, The Station Agent.

Bibliography

Alexie, Sherman. "How to Write the Great American Indian Novel". In Native American Songs and Poems (NY: Dover) 1996, pp. 28-29.
Anzaldua, Gloria. Borderlands/La Frontera (San Francisco: Aunt Lute Books) 1987
Auden, W. H.."Surgical Ward". In The Collected Poems of W. H. Auden (Kingsport, TN: Random House, 1945)
Baca. Jimmy Santiago. A Place to Stand: The Making of a Poet (New York: Grove Press) 2001.
Ball, Tamara Dale. "Search for wholeness: the adventures of a doctor-patient." The Pharos. 54 (1): 28-31 (Winter, 1991).
Berlin, Richard. "Open You Up" by. In How JFK Killed My Father (Long Beach: Pearl Editions) 2004, p. 10
Broyard, Anatole. "The Patient Examines the Doctor". In Intoxicated by My Illness (New York: Clarkson Potter) 1992, pp. 33-58
Bulgakov, Mikhail. "The Steel Windpipe". In A Country Doctor’s Notebook (London: Collins and Harville Press) 1975, trsl. Michael Glenny
Campo, Rafael. "The Distant Moon, I, II,III, IV". In The Other Man Was Me (Houston: Arte Publico Press) 1994, pp. 113-115
Campo, Rafael. "It Rhymes with ‘Answer’ " In The Poetry of Healing: A Doctor’s Education in Empathy, Identity, and Desire (New York: W. W. Norton) 1997, pp. 222-254.
Charon, Rita. Narrative Medicine: Honoring the Stories of Illness (New York: Oxford University Press) 2006
Chesney, Gregg. "Apparition" In Body Language: Poems of the Medical Training Experience, Jain, N., Coppock, D., Brown-Clark, S., eds. (Rochester, New York: BOA Editions) 2006, p.27
Cisneros, Sandra. "Original Sin". In Loose Woman (Vintage Books: New York) 1994, p. 7
Clifton, Lucille. "In the inner city". In Good Woman (Brockport: BOA Editions) 1987, p. 15
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Narrative Genetics: Following the Trail of Spit

October 30, 2008 at 2:51 pm

Genetic Modification -  Swirl of DNA fragments suggesting the mixing of genes in genetically modified organisms.   Photograph 2003. Guy Tear, Wellcome Library, London

Commentary by Marsha Hurst, Ph.D., Narrative Medicine Program,; faculty member and Research Scholar at the Institute for Social and Economic Research and Policy, Columbia University; co-editor with Sayantani DasGupta of Stories of Illness and Healing: Women Write Their Bodies (Kent State University Press, 2007)

 

"When in Doubt, Spit it Out." (1) It was fashion week in New York City, and the DNA testing company 23andMe was taking advantage of the party mood to promote its spit-based DNA testing product, now being offered at a discounted rate of $399.A Normal business at 23andMe is not conducted at celebrity spitting parties but online, where you can order a test kit, send in your saliva, and a month later get the pieces of an 89-gene DNA puzzle, that can be building blocks for family ancestry stories and future illness narratives.A In addition to connecting with past and future, this 2.0 version of the narrative, situates you as part of a current social network so that your story can be shared with others in multiple configurations of family and genetic connectivity.A The company "democratizes" your personal results by making them invitations to network, as in "You are invited to join the group Slow Caffeine Metabolizers."

I am fascinated by this story of the 23andMe spitting party and its place in an area of study, research, and analysis some now term "narrative genetics": the exploration of how genetic understanding and belief are expressed through story, and of the impact of those narratives on our person, our society, and our culture.A In order to better understand narrative genetics, I have organized, with the help of Sayantani DasGupta, and our colleagues in the Narrative Medicine Program at Columbia an interdisciplinary faculty seminar on Narrative Genetics. The seminar, open to the public, is sponsored by ISERP-the Institute for Social and Economic Research and Policy at Columbia University Topics include genetic narratives in film, reproduction, advocacy, clinical practice, family narratives, disease narratives, and genetic narratives of race.

What are the stories we tell about ourselves, our identities, our families, our communities, our society, and how have these stories become "geneticized."?A Narrative genetics is about how and why we use genes to tell these stories.A And what these genetic narratives then, in turn, can teach us about the way our society explains health and illness, personhood and community.A Certainly for much of this new millennium we have, as anthropologist Kaja Finkler had already noted in 2001, "seen an explosion of research in genetics and on genetic inheritance," and with that an explosion of popular interest-and popular expression. (2)A Amy Harmon’s series on "The DNA Age" in the New York Times only confirms a mainstream fascination with genetic stories, and with the essentializing "me-ness" of these reports.A These stories about genes are about our uniqueness-but also connect us with our commonness in ways that appear to be reassuring, even if they are surprising.A Searching for who we are through genetic testing has become a construction for the American "roots" narrative.

Narrative Genetics as Recreation

AA year ago, prominent scholars published an article in Science on "The Science and Business of Genetic Testing," addressing a concern that ancestry genetic testing was treated recreationally-and promoted as such commercially. (3)A Testing results told a genetic family story that was not only simplistic, incomplete and inaccurate, but also had important personal and policy implications.A "Recreational genetics" came to mind again as I sat down to write this blog about narrative genetics and was diverted by that 23adMe spitting party headline.

Aside from the fascinating frivolity, the contextualizing of personal genetics in recreational and social space, the party report also tells a familiar story of health commerce and medical marketing.A Imbed a product in the world of celebrity, of glamour, of wealth, and it will sell to those who aspire to this world.A And because both celebrity and marketing are about making private lives public, it reverses much of the focus of genetic public policy, which has been on the privacy of genetic information and the protection of that privacy. (4)

Besides commercial use, public genetic narratives have been widely used for advocacy purposes-particularly to generate funding for research into genetic conditions.A In the 23andMe narrative entrepreneurial success and genetic disease advocacy are intertwined. Sergey Brin, a co-founder of Google and the husband of Anne Wojcicki, co-founder of 23andMe, has not only had his DNA tested by 23andMe, but took his results a step further than the party or the company’s social network:A Brin announced on his personal blog, "Too," (Sept. 18, 2008) Athat he had a mutation of the gene LRRK2 gene, known as G2019S, which increases his risk of getting Parkinson’s disease, a condition from which his mother, who also carries the gene, suffers.

Brin tells his family story as a narrative of personal genetic risk, of family caring, and of genetic disease advocacy.A It is also a familiar American narrative in which great wealth drives medical research.A The family has already endowed a professorship to support research into Parkinson’s and Brin has framed the personal knowledge he gained through 23andMe testing as an "opportunity" to support advocacy and research into Parkinson’s.A In fact the company 23andMe also supports research into genetic conditions by encouraging non-moneyed contributions:A Spitting parties are encouraged to gather "anonymized" saliva samples for genetic research purposes.

Genetic Narratives as a Public Good

A parallel project to the 23andMe corporate enterprise -the Harvard-based, but privately funded, Personal Genomes Project -also constructs personal genomic stories as public information, but for the larger "good of the general public" (see Mission Statement). As an "experiment in public access" (5), volunteers are recruited to share their "genome sequences, related health and physical information, and [to report] their experiences as a participant of the project" (PGP Mission Statement). The first results of this Project were recently released. (6) Celebrity in the non-profit academic world is constituted somewhat differently: The PGP-10 — the first 10 volunteers-include a mix of mainly science and medicine entrepreneurs, academics, and investors, led by George Church, a Harvard professor of Genetics. AAMembers of the PGP-10, like the celebrities at 23andMe parties, are expected to inspire by example. In keeping with the academic and public responsibility narrative, however, the 100,000 volunteers accepted into the PGP must go through a complicated informed consent process, including a test of basic genetic knowledge. Is there is a hint of an old "positive eugenics" narrative here? Is there a challenge to the concept of informed consent when consent is given to a social experiment where risks can barely be enumerated?

Both the for-profit and the not-for-profit versions of making the personal genome story public beg the complex question of whether, in this genomic age, anonymity is even possible. Our body parts and bodily fluids scream out our identity in any disembodied state. The Personal Genome Project openly questions whether "guarantees of genome anonymity" are even "realistic." As a society we then must consider the implications of constructed genomic narratives, in the same way as the constructed narratives of race, gender, and disability in America are being critiqued.

Genetic Narratives as Advocacy

ATo the extent that genetic stories are personal, familial, entrepreneurial, or even activities of individual choice and private financial means-they are in the "private" sector, although personal genome stories are both privatized commercially and publicized in social and socially "responsible" spaces.A Genetic narratives that empower the private funding of scientific research enter a kind of private-public realm with unclear and easily transgressed borders. His Brother’s Keeper, the story of how Jamie Heywood directed an all-out war of "guerilla science" to save his brother from the lethal ravages of amyotrophic lateral sclerosis (ALS), illustrates the power of a family genetic narrative that drives an extraordinary research effort.

In our Narrative Genetics seminar, we will hear a very different story: Huntington’s disease as a family narrative of illness and risk.A Alice and Nancy Wexler’s work combines writing, research, and advocacy in a narrative of families and communities that has guided scientific genetic research; and, as an integral part of that work, they have told the stories of the meaning of this disease for families and communities in vastly different places, cultures, and times.(7)

As a health advocacy educator I am keenly aware of the power of personal stories to drive public policy, and stories of the impact of genetic disease on families and communities have been a compelling engine for organizing and action. Some have advised caution as we take public action based on private narratives (8), but we also know that our personal stories can compel us to public beneficence. Rachel Grob, who has elicited the stories of parents of children with cystic fibrosis, will discuss in our Narrative Genetics seminar how parent advocacy-and narratives of "urgency"-can impact policies like newborn screening that have become public "health" mandates.A Gaining thoughtful perspective and understanding of these genetic stories and their impact will be increasingly important-and increasingly difficult-as the genetic explanatoryA paradigm gains force through genetic knowledge and power through use.

The tension between narratives that tell a story of the centrality of the individual in society and narratives that tell a story of the centrality of the public interest is present-if not explicit-in the 23andMe story. AThe states of New York and California have told 23andMe and other biotech companies-including Navigenics and deCode Genetics -that sell genetic tests to the public (13 companies in California and 31 in New York) to "cease and desist" these direct sales. (9) The move to regulate commercial genetic testing is countered by a growing biotech industry that argues genetic information is part of an individual’s right to her own personal information. Do genetic tests disclose medical information or personal information, and is there a meaningful line between the two?A The public policy challenges to private commerce in genetic testing cross that infinitely contestable American frontier between private enterprise and public responsibility in health care.

Family Stories

AOne of the presentations in our Narrative Genetics seminar will be by a research group with which I have been working. (10) We have been asking pregnant women to tell us their family stories:A What does heritability mean to them?A What do they think is passed on to their children, and how? Our primary purpose is to develop ways to educate genetic counselors in "narrative genetics," teaching them to elicit and honor the stories their clients tell about inheritance in their families and their cultures. But our findings also remind all of us who are sometimes overwhelmed by the power of the genetic paradigm-and the potential of genetic science- that when we tell our own stories they may be more complex and nuanced cultural stories, stories about heritability in which genetics plays a very narrow role.A When the women we interviewed told their own family stories, they clearly connected with ethnic, racial, religious, geo-cultural,and socio-economic groups but their stories of community were not told through a genetic lens.

So I will end this blog entry with a family story.A When I was eight, and my mother eight months pregnant, a family friend in the medical profession convinced her that if she spit into a test tube, and the saliva looked brown under a microscope, she would give birth to a son-a much-valued outcome for a family with two daughters. My new sibling was, indeed, male, and the saliva had, indeed, been brown-but so, confessed my mother, had the Hershey chocolate bar she secretly consumed before spitting. It has become a family story that evokes an entire "photo album" of my young parents, happy and healthy in post-War America, and expecting ever more of the same. The story is set in a climate so optimistic that they could believe in a Stevenson presidency. Spitting into the test tube was part of the fun-and part of the hope of a post-war America.A We take for granted today the ability of genetic science to tell us the sex of a fetus, but in 1954 it was part of a narrative of scientific promise, a story in which science is put to work as commercial technology, making every home hum with appliances.A It was also, of course, a story of gender and family, imbedded very much within the world of the Feminine Mystique, a world in which a family without sons was an incomplete tale.

References

1. Allen Salkin, New York Times, Sept 14, 2008
2. Kaja Finkler, "The Kin in the Gene: The Medicalization of Family and Kinship in American Society," Current Anthropology, Vol 4, No 2 (April 2001), p. 235.
3. Deborah A. Bolnick, Duana Fullfiley, Troy Duster et al., "The Science and Business of Genetic Ancestry Testing," Science, Vol 318 (19 October 2007) [accessed October 18, 2007].
4. For example, the Genetic Information Nondiscrimination Act, signed into law last May after over 12 years of unsuccessful attempts at passage.
5. George Church. Genomes for All, Scientific American , January 2006, p.53 [accessed 10-22-08].
6. Amy Harmon, "Taking a Peek at the Experts' Genetic Secrets," New York Times, October 19, 2008.
7. See, for example, Alice Wexler's books, Mapping Fate (University of California, 1995) and The Woman Who Walked into the Sea (Yale University Press, 2008), and her article "Chorea and Community in a Nineteenth-Century Town," Bulletin of the History of Medicine - Volume 76, Number 3, Fall 2002, pp. 495-527.
8. See also Rebecca Dresser's book, When Science Offers Salvation: Patient Advocacy and Research Ethics (Oxford, 2001) as well as John McDonough's classic article in Health Affairs, "Using and Misusing Anecdote in Policy Making".
9. Andrew Pollack, "Gene Testing Questioned by Regulators," New York Times, June 26, 2008.
10. This group is based at Sarah Lawrence College and funded by a Jane Engelberg Memorial Fellowship award.

Health: Stories in the Service of Making a Better Doctor By PAULINE W. CHEN, M.D. Narrative medicine employs short stories, poems and essays to build empathy in young doctors.

October 25, 2008 at 11:20 am

Article on literature, narrative, and medicine, by physician author, Pauline Chen-withA a link to a "Well" blog that drew comments on the article.

The Story Always Comes First

October 17, 2008 at 1:00 pm

A pair of round glasses on a sheet of writing, Wellcome Library, London, Photograph 2004

Commentary by Jay Baruch, author of Fourteen Stories: Doctors, Patients and Other Strangers (Kent State University Press, 2007). Assistant Professor of Emergency Medicine and Director, Ethics Curriculum, at the Warren Alpert Medical School at Brown University


Question: What do you call physicians who write?

Answer: Physicians.

This particular quip rings funny to me-and perhaps only to me. It riffs off of Kurt Vonnegut, who swathed this gem in toilet tissue in his book Timequake.

Question: What is the white stuff in bird poop?

Answer: That’s bird poop too. (1)

Like a skilled physician who distracts the patient to minimize the pain of injection, Vonnegut knows how to bury sharp insights in silliness so the reader never feels a prick.

Regardless of the color, whether it lands on your head or windshield, its still bird poop. That’s how I feel about being a physician/writer. One part cannot be extracted from the other. There are no smooth fascial planes along which to dissect, no separate and distinct blood supplies. Principles and moral values guiding my bedside responsibilities and behavior somehow feed into the slow meandering act of writing about them. I have trouble finding a physical and emotional distance that is far enough from this moral tug.

How does this commingling manifest itself?

When I write doctor stories, I write fiction. Over the years, this unconscious decision has nonetheless been buttressed by three dominant justifications: patient privacy, trust and potential abuse of the physician/patient relationship, and my belief that the story always comes first.

Thieving and the Physician/Writer

I’m very uncomfortable writing non-fiction or creative non-fiction (a genre I’m still trying to understand). Writing about "real events" and "real people" from my role as a physician makes me feel like a thief. For me, you can dress up real patients, bend and twist them like balloon animals to alter identifiable details, and yet fail to alter enough core narrative slivers. It’s not only what’s changed, but what remains that’s concerning. The female in life becomes a male on the page, the Latino kid on crutches is now a Korean in wheelchair, the bald guy preens about with a Mohawk. But too much faithfulness to the real, protection of the factual, the writer risks missing dustings of critical evidence, like fingerprints, or hair and skin spiraling with DNA.

Why this thieving feeling?

The physician-patient relationship is tender and complex, charged with issues of vulnerability and power. Privacy and confidentiality are ambiguous and complicated values in today’s society, especially in a time of media overexposure, reality TV, and the "Wild" Wild Web. The house of medicine is one arena where foundational values and laws from Hippocrates through HIPAA have clearly drawn the lines around privacy and confidentiality.

Question: What do you call patients in medical narratives?

Answer: Patients.

The Emergency Department: Writing and Rapid Trust

I often wonder if my specialty and sphere of medical practice deepens my sensitivity to the moral issues at play in the physician-patient relationship when I’m writing. Part of the demands of emergency medicine involves caring for sick strangers. A large part of that challenge involves building rapid trust. Not many people know about my creative work, but local reputations develop. I don’t want to risk the perception from patients that I might use them for personal purposes. I don’t want patients to guard sensitive medical information valuable to their care out of fear the physician/writer is listening with different ears. Patients must feel like the subjects of my gaze and attention, not as objects.

After all, I’m billed as a physician, someone bound by the Hippocratic Oath (or at least a less misogynist version of it), someone duty-bound to place patients first. The ID hanging from pocket reads MD, not PRESS. A stethoscope hangs over the back of my neck. I don’t carry a long, skinny reporters’ notebook. I don’t wear a coffee-stained sport coat. I wear a coffee-stained white coat.

Jack Coulehan and Anne Hawkins have written cogently about the ethical considerations facing physicians who write about their patients and the potential impact on the physician-patient relationship. (2) How would the patient react if he or she learned they were written about? Rita Charon has argued passionately that patients own their stories. Respect for patients demand they give consent for use of their stories. (3) I’ve beenA rereading their profound work and those of other health care providers and scholars the past few months as part of a project on the ethics of medical blogs. I recently lectured to medical students on this subject, and grappled to find a closing nugget for them to chew: The best I could do was this: Physicians must care for patients on the page, too.

The acute, short-lived, compressed form of my physician/patient relationship poses certain challenges to obtain permission. So I try to avoid the need for permission altogether.

The Medical Story as a Black Box

But more than the many moral concerns stated above, my decision to write fiction is dictated by the demands of the particular stories I’m trying to write. Fiction permits me imaginative freedom to plunge into confusion and discomfort, to ask questions that typically pull me far away from the real in attempts to pin down certain truths.

What is driving my desire to tell this story? Whose story is this? What’s at the heart of this story? How much and what part of this story earns space on the page, and what lives above the words, a past and present only I’m privy to. Once I make these decisions, write drafts, change my mind and kill more trees, I ask these questions again. Why am I writing this story?

George Saunders, fiction writer and essayist, describes art as a black box into which the reader enters in one state of mind and exits in another. The reader should exit a story altered somehow, feeling that something "undeniable and nontrivial" had happened. (4) The writer doesn’t get points for accuracy, for filling the box with facts and details. The writer must aspire for a more transformative experience. The poet Tess Gallagher alluded to this when describing the purpose of language in poetry. "To enter emotional spaces on terms that are original." (5)

Emotions pull me into a story, as well the desire to understand particular human behavior and to effectively communicate that which surprises and disturbs me. The medicine practiced in my stories must be accurate. But the characters and events, the narrative bones, aspire to a "story truth," more than a "happening truth." (6)A Tim O’Brien, in his stunning book, The Things They Carried, argues that if the reader identifies with the plight of the characters, it shouldn’t matter whether events are true. The truth is felt in the reader’s gut. Sometimes invention is necessary to clarify and explain. (7) It might be the contradictions between what happens, what is expected to happen, and perhaps, what should happen. I set off on unexplained and unexplainable detours. The factual details fall away. What remains are inventions, people and conflicts and histories absent at the beginning, fueled by tension and emotional engines.

The Importance of Wandering Far From Where I Started

I play with points of view, which removes any pretension of veracity. An example: many versions of my short story, "Road Test," were written through each character’s eyes, only to come to life when I realized this ER story belonged to the janitor. Only through his eyes was the conflict between the homeless drunk and the young doctor drawn most acutely, permitting the reader the most intimate and unbiased access to the complicated and often ugly thoughts and emotions that compelled me to write this story. It reads as a "real" event. The doctor and the homeless man weren’t drawn from particular people, but their actions and feelings and fears are painfully real.

Recruiting different voices in medical situations opens the story to moral opportunities. When the writer is a physician, the patient’s experience is channeled through, and controlled by, the physician. The narrative choices belong to the one with a stethoscope and a pen. One of my great challenges in the writing craft is developing the empathy, the curiosity and confidence to inhabit lives most unlike my own. Should I fail to create convincing characters, it’s not for lack of interest or desire, and I hope my respect for these persons seeps through.

Fiction gives me room to wonder and wander. I’m allowed to shape a medical situation, hold it up to the light and twirl from side to side. Take the man dying of cirrhosis, his domineering wife hot with disdain for doctors and demanding narcotics for her husband’s pain. These two individuals are at the center of my story, "Thin Walls."

Even the most unlikable people harbor a measure of kindness, and finding it is my mandate as a writer. Many difficult patients and family are sympathetic, calm and reasonable people who become unhinged or uncontainable only when they encounter the health care system, or the person in the white coat. Maybe every test I run brings them one step closer to bankruptcy. Maybe the wife’s scared to lose the love of her life. Maybe her pushiness is the only semblance of control left to her. Maybe she and her husband share an unhappy marriage. Now he’s dying, ramping up the misery?

The start of any medical story, at the bedside or on the page, always begins elsewhere. The "real" medical incident that set me off writing this story happened almost two decades ago, a moment that somehow, in the discovery of writing, led me to the two people mentioned above. I was an intern, holding a young child brought to the hospital for neglect. I don’t remember the details of the case. I remember the child’s empty eyes, the way his inert body slipped through my arms, his frail body awkward and surprisingly heavy.

I imagine what my invented characters would say if they read about themselves. I don’t necessarily want their approval-I’m often hard on them-only their acknowledgment that I had been fair and honest, that due diligence had been done to understand as completely as I could unflattering and embarrassing behavior.

Fiction and the Physician/Writer: A Weak Crutch?

There are limitations in writing fiction. Making up experiences might fail the reality test, be viewed by some as lacking validity. Physicians who write in non-fiction genres often become central characters in their work. That takes a great deal of honesty, courage, and skill to compose such narratives. I respect and admire many physicians who have created books that glow with compassion and insight. Perhaps I open myself up for criticism by removing myself from the action, by dispersing dark moments and emotions onto other characters, and making these fictional others bear my burdens.

Critics might also argue that writing fiction doesn’t absolve me entirely from accusations of feeding off my physician-patient relationships in my creative work. Henry James wrote of the "perfect dependence of the 'moral" sense of a work of art on the amount of felt life concerned in producing it," and the "kind and degree of the artists’ primary sensitivity which is the soul out of which its subject springs." (8) The intensity of a clinician’s work, the consuming, unshakable nature of the interactions, contributes to my "felt life."

In Conclusion: The Physician/Writer is Still a Physician

I want my characters, and my work, to resonate with readers, because they are all potential patients. Should readers come to my emergency department, I hope they will be comforted to learn that this writer will be caring for them, and they will trust the physician.

The process of writing fiction allows me to discover emotional truths about characters and myself that would have remained unearthed had I obeyed a chronological or factual accounting of events. Referring back to Saunders’ metaphorical black box, I aspire for readers to enter a story and emerge altered in some way. For me, that can only happen in the work of writing drafts, and remaining open to possibilities. The journey takes me to an unexpected territory far from where I began, from the place where words are chosen with great care, from my pressed white coat, my hospital ID hanging for all to see.

Endnotes


1. Vonnegut K. Timequake New York: G.P Putnam’s Sons, 1997 p.142

2. Coulehan J, Hawkins AH. Keeping Faith: Ethics and the Physician-Writer. Annals of Internal Medicine 2003;139: 307-311.

3. Charon R. Narrative Medicine: Form, Function, and Ethics. Annals of Internal Medicine 134;2001: 83-87.

4. Saunders G. "Mr. Vonnegut in Sumatra" in The Braindead Megaphone. New York: Riverhead Books, 2007. P.78

5.A A Piece of Work: Five Writers Discuss Their Revisions, ed. Jay Woodruff.A Iowa City: University of Iowa Press,1993. p.68

6. O’Brien, Tim. The Things They Carried New York: Penguin Books, 1990.p.203

7.A Ibid, p. 180.

8. James, Henry. Preface, The Portrait of a Lady. New York: Modern Library Paperback Edition, 2002: p. xxiii.

My Story, Your Attention, Our Connection

September 25, 2008 at 4:10 pm

Patients waiting to see the doctor, with figures representing their fears.

Commentary by Deirdre Neilen, Ph.D., Associate Professor, Center for Bioethics & Humanities, SUNY Upstate Medical University, Syracuse NY, and editor, The Healing Muse

We are finalizing our eighth issue of The Healing Muse, and I find myself again caught in the web our poets and writers and artists are spinning. No matter that this is probably the eighth or ninth time I am reading their words or looking at their images. Each one springs before me as an entity, a being in search of something or someone to complete its quest for authenticity, its demand for understanding and mutual recognition.

As a journal dedicated to exploring issues of illness, disability, and medicine from all sides of those experiences, The Muse provides a unique forum for conversations and discussions that can seem difficult to initiate. When a diagnosis of cancer is given or when someone we know has a mental health crisis, we often have an initial sense of fear. We hesitate to say the wrong thing; we worry that our words might worsen the impact of the situation. We want to help, yet we too might feel the despair that lurks just behind the diagnosis. And inevitably, we feel totally and horribly alone. This isolation is one of the worst aspects of illness and medical treatment. The Healing Muse represents one poignant and powerful solution to this alienation; it can even open up a dialogue between patients and clinicians.

People have asked those of us who put together the journal if we don't feel overwhelmed by the sadness of the poems and stories. They wonder how we "market" The Muse. Who really wants to read about radiation or chemo treatments, about physicians who can't save patients, or parents who can't save their children? Does anyone honestly want to know that his doctor can feel inadequate and furious all within the same second?

Narratives and Medical Students

To answer these questions, let me don the other hat I wear at my university, that of humanities professor in the college of medicine. With one of my physician colleagues, I teach a humanities elective once a year that is open to our medical students, our nursing students, and students from two private universities in the city. We have taught Death and Dying, Images of Medicine in Film and Literature, and AIDS in Literature. Each time we teach, we are struck by the medical students' hunger for discussion about medicine's more hidden aspects: the dying process, the fatal prognosis, the side effects of treatments, the chaotic relationships that can accompany the patient, the ethical dilemmas that no antibiotic can answer.

It is within literature that their questions and their attitudes can begin to be answered and explored. When I bring them an essay, "The Bruising," by Dr. Thomas Gibbs which appeared in Muse 6, I am giving them the opportunity to watch a physician make the connection between his pregnant patient who will die from acute myelocytic leukemia and the death of his own mother from leukemia many years earlier. They see the physician "trying to prevent the panicked look" he sees in a young couple's eyes as he prepares to run the tests that will confirm his suspicions; they eavesdrop his interior thoughts as he realizes that this young couple had "walked into the room with a future" and suddenly everything is different. Our discussion centers on the physician as a bridge between the life they knew before and the unknown outcome awaiting them with treatment.

What intrigues the students and most readers I suspect is that Gibbs does not make the diagnosis his most powerful image or conclusion. He lets us know the ending is not going to be a felicitous one, but what emerges as the more important part of the story is how the young couple and the physicians and the nurses met this most unwelcome death. The wife expresses her husband's and her desire that everything be done to save her baby. The nurses make sure that the couple is given as much privacy and quiet time alone as possible. In addition to his regular visits, the physician asks the nurses to call him whenever there seems to be a change, good or bad, in the patient's condition so that he may provide whatever solace he can conjure. Once this leads him to a late night visit to McDonalds for a strawberry milkshake, the same kind he remembers bringing his mother when her lips were ulcerated from radiation. He recognizes that although so much more is known about the disease and so many more people have been helped, in this case, with this patient, he is again facing an indescribable loss. Thus, our physicians-in-training learn about bedside visits and about complementary treatments that won't be found on insurance forms or hospital billing codes.

And the students see that it is Dr. Gibbs who calls the code after the C-section brings a healthy son into the world a little bit before his mother must leave it. When he goes to the calling hours, Dr. Gibbs tells his readers that "obstetricians aren't supposed to lose patients" and confesses that is why he chose this specialty. But our students are learning that all physicians and all of us will stand at some point in the presence of death and how we handle that perhaps defines us in quintessential ways. In this instance, Dr. Gibbs and the nurses find themselves marking the anniversary of the patient's death each year with some poetry and some conversation. It has been 7 years now, and he sees this ritual as one of the ways we insist upon a recognition that we matter, that we were here only for a short time and yet we were loved.

If in our medical education, we are almost solely fixated on disease properties and drug and surgical interventions, we will not be prepared very well for those times when the black bag runs out of tricks, when disease proves more powerful than goodness or justice or mercy. Journals like The Healing Muse remind us that healing can occur even in the presence of bad outcomes and that good writing can, as Rafael Campo said, "make empathy for human suffering, if not entirely comprehensible, then at least clearly and palpably evident."

Patients Owning Their Narratives

When we do readings here in Syracuse or when we travel to other venues with The Muse in hand, we encourage our listeners to write for us too. We have found an enthusiastic audience in those who have experienced illness or who have cared for loved ones with illness. Their stories and poems can offer details that flesh out a patient's history or chart. In the poem "Shaking," for example, the reader learns that the speaker is not just a woman who suffers intermittent seizures after her brain surgeries but rather a mother who's concerned that these seizures are frightening her children. In sixteen short lines, she reveals her fear and her neurosurgeon's careless disregard of this fact as he mockingly re-enacts how her arms flail when an episode occurs. There is no more dramatic or concise way to convey the importance of listening to a patient; the students are as shocked as the patient when they realize that the physician has only scared the patient and furthered her isolation.

Our new issue includes an essay by a person who received electric shock treatments to relieve her depression. We enter her world and come away wondering as she does, is this truly the best we can do for each other? It is not only the treatment that her essay questions but the way we provide such treatment that makes us cringe. Her words and images are powerful testaments to the human spirit, and they connect her to us, bursting through the isolation her illness seemed to force upon her. Like the current running through her nervous system, her essay jolts us into awareness and dialogue. We see her, truly see her, and by the essay's conclusion, we know something important about her. And we wonder how much of this her clinicians know.

Some might think it ironic that medicine could use literature to return the profession back to its focus on the patient. Managed care and technology have pushed clinicians away from people and into numbers, statistics, and machines as supposedly more reliable gauges of health. The growing body of literature from physicians and lay people, however, shows that people are pushing back. We find in journals like The Healing Muse and in the columns of medical journals evidence that the desire for connection and the benefits derived from it are real and affecting.

"Tell me a story," a child says to a parent, and the magic begins. Later, the child will ask "Tell me a story about when I was little," or "when I was born," and again the weaving together of our past and present begins and helps to create our sense of self. We see ourselves reflected in the stories told by those who care for us, who love us. And when we are sick, our families want to tell our story to the doctors and nurses, to the therapists, to anyone who comes to give us the magic of the pill or the treatment. We believe that if they know us more intimately, they will care for us more carefully, and we will surely improve.

The power of language is such that it can introduce strangers and within minutes transform them into people who find themselves curious about each other, whose curiosity then compels them to go further into the story, and who finally may end up caring deeply about each other. Is this not a possible description for good medicine?

Buy two copies of the new Muse and call me in the morning.

Trekking And The Medical Humanities

September 13, 2008 at 10:35 am

Trekking through the Himalayas

Commentary by P. Ravi Shankar, M.D., Department of Medical Education, KIST Medical College, Imadol, Lalitpur, Nepal

 

Nepal, trekking, and new perspectives

In a previous commentary for this blog I wrote about the development of medical humanities modules in two Nepalese medical schools. In this article I aim to pen my thoughts about trekking in Nepal and the Medical Humanities (MH). Nepal is a small country in South Asia surrounded by two of the most populous countries in the world - China and India. Nepal has among the greatest altitude variations of any country on Earth. The land rises from the flat plains of the 'terai' to Mt. Everest, the highest point on the planet within a distance of 150 km. The hills and the mountains of Nepal are a trekker's paradise and attract people from a number of countries. The unspoiled villages, green hills, verdant valleys and soaring Himalayas are the major attractions. The present population may be somewhere between 27 to 30 million. A number of ethnic groups inhabit the land and more than 500 different languages and dialects are spoken.

How can trekking be related to the humanities? On first glance these two appear very different. MH is an intellectual activity and is pursued by medical students, medical teachers and others to obtain a perspective on the human and humane side of medicine. Trekking is a tiring physical activity where you tramp up and down hills, cross streams and endure cold, heat, sweat and grime. Trekking basically is about freedom and following a simpler and gentler way of life at least when you are on the trek. Karl Benz's motor car is absent and the gently rising middle hills with their river valleys have to be traversed on foot. The air is pure, the light magical, the people friendly and you have stepped back a few decades in time! You follow the rhythms of nature. You go to sleep soon after sunset and wake up with the first light of dawn or even before. Many of the illnesses of civilization are the result of leading a lifestyle not in tune with nature's clock. MH in my opinion searches for the simple in disease and health. This is becoming a difficult task in an increasing complex world and trekking may be of some help!

The landscape can stimulate creativity among the students and inspire them to reflect on life, relationships and death from a 'different' perspective. Also exposure to the legends, voices and rich oral traditions of the mountain villages can enrich the writing and other creative skills of students and faculty. These stories, paintings and other art objects can serve to explore a number of issues in the humanities.

Medical humanities retreats

Trekking regions could be a location for weekend MH retreats. In the Dalhousie University, Canada, weekend retreats in the beautiful Canadian countryside are common during the MH module. In Nepal, the trekking areas can serve a similar function. Cities like Kathmandu and Pokhara have the Langtang/Helambu and the Annapurna trekking regions at their door step and students and faculty can easily trek to some of the nearby villages. Many other cities in the plains also have hill towns nearby. The trekking regions have over the years built up good infrastructure and facilities. Sitting in the dining room of a lodge by a roaring fire as the mist settles in for the evening can be a delightful experience for students and faculty and can lead to a closer and more informal relationship between them. The student-teacher relationship is relatively hierarchical and authoritarian in Nepal and trekking can lead to a more egalitarian and friendly relationship that may be more conducive to learning the humanities.

A cultural and social journey

Most treks in Nepal start in the middle hills though these days roads are making greater inroads. The road head is usually a congested and noisy small town and you can study a village slowly urbanizing. An interesting phenomenon with MH implications! People may either trek alone, with a porter or with a group. The porter is usually a farmer from the hills and it is an interesting experience to walk along this person for days on end. You are offered a different perspective on life and the country! Trekking in a group can also introduce you to other members from a different region or even from a different country.

The middle hills are welcoming with bright sunshine and villages mainly inhabited by the Brahmins and Chettris, the dominant castes in Nepal. Education is becoming more widespread and you can watch children race along the trail to their schools, the same steep trail where you rest and catch your breath after every two steps. As you go on the valley gradually becomes narrower and the river flows through a deep gorge and the terrain becomes increasingly rocky. Magnificent waterfalls and dense forests create an enchanted atmosphere. The going is tough but the reward is great! After a few days travel you reach the dry Tibet-like valleys behind the Himalayas. These are mainly inhabited by Bhotia communities of Tibetan extraction. This is a classic description of the Around Annapurna, Around Manasulu or even the Everest trek from Jiri. However, you can also fly in to a remote airfield and then start your trek. There are also shorter treks for those short on time.

Difficulties in accessing health care, and the modalities followed by the inhabitants to cure disease and protect health are important issues for the Medical Humanities. Because of the mountainous terrain, the volatile and unstable political situation with its prolonged conflict and poor socioeconomic development, modern health care may sometimes be many days walk away. Complementary Medical practitioners and faith healers often fill in the yawning gap for health care. Thus complementary medicine, rising standard of living, increasing number of trekkers and access to medical care are closely interlinked.

Access to health care, standard of living, and complementary medical systems

Many of the villages are situated one or two days walk from the nearest road head and to reach them you have to walk up and down winding trails through the hills. You can see first hand the important role complementary practitioners play in providing health care. Sick persons are also often carried in baskets on the back of sturdy village porters to the nearest health centre or hospital. The basket is often called the 'hill ambulance'.

The main trekking areas have seen a rise in the standard of living along with westernization and a change in the outlook. The approach to illness and its treatment is also changing. Western medicine is being more widely accepted and westerners (even trekkers) are regarded as doctors and experts in modern medical care. The farmers are able to supplement their income through the cash earned from trekkers and the traditional subsistence village economy has been replaced by a cash one. The overall health status has improved but the diseases of civilization are slowly beginning to make an appearance.

In the middle hills, Hinduism is the main religion and ayurveda and herbalism are the main medical systems. Faith healing is also common. In the gorges, the Buddhist influence becomes stronger and shamans become the main faith healers. In the trans-Himalayan valleys, Tibetan medicine dominates and the practitioners called 'amchis' cater to the healthcare needs. Modern allopathic health centers and hospitals are also present in a few areas mainly manned by paramedics. The process of creation of an indigenous medical system, its interaction with other medical systems and with western allopathic medicine (which came from the cities) can be a fascinating subject of study. The complementary systems offer a different perspective and while not always scientifically rigorous like the allopathic system may be more holistic considering man in the perspective of the cosmos.

Progress made

In the recent decades tremendous progress in healthcare indicators and access to health care has taken place. Education is becoming widespread among the younger generation. The importance of clean drinking water, sanitation, proper sewage disposal is becoming evident to the rural and the underprivileged urban populace. A number of health centers, health posts and subhealth posts (institutions delivering primary health care) are being set up and both doctors and paramedical workers are looking after the health of the population. Community hospitals and dispensaries have been set up in many areas and good quality medicines are being manufactured in the country. Nepalese manufacturers now meet more than 40% of the country's requirements and this proportion will increase in the future. Students can see first hand these changes in the rural areas of Nepal. These changes are also present in urban areas but are more dramatic and easier to study in the rural areas.

Humanities issues of particular concern to Nepal

The major humanities issues of particular concern to Nepal in my opinion are to encourage a caring attitude towards patients, taking into consideration the patients’ weak socioeconomic conditions in treatment decisions; help patients make proper decisions about treatment and health care; promote service in rural and underprivileged areas; play a role as a motivator and an agent of change in rural communities; develop good working relationships with complementary medicine practitioners and involve them in making healthcare accessible to the underprivileged; and adapt western allopathic medicine to a traditional setting. Many of these issues may also be applicable to other countries in South Asia.

Thus trekking can serve to introduce, highlight and underline a number of MH issues in the Nepalese context. The exposure to fresh air, fresh food and an unhurried pace of life can do wonders for the mental and physical health of the students and faculty. The unhurried environment allows for deep reflection and in depth study of a number of issues. Thus trekking and the humanities may be closely related in the Nepalese context. The challenge is to explore and utilize the connection to the full!