The Story As Chameleon: A Transformation

September 14, 2009 at 9:26 am

A chameleon sitting on a branch of a tree. Colour half-tone. 1926.

Commentary by Patricia Stanley, M.B.A., M.A., Guest Faculty, Program in Narrative Medicine, Columbia University’s College of Physicians and Surgeons; Clinical Coordinator, Masters in Narrative Medicine

There is a short story, "The Shawl", by Louise Erdrich, which is about story and memory and the reworking of old stories into new ones to effect healing. (1) A story of a child being thrown to the wolves is transformed generations later into the child's heroic leap to save a family, the tribe, the pride of the reservation. This story has particular meaning for me since I too have transformed a tragic story from a past time of much suffering into a reason to heal and to bring healing to others through my work as a health advocate. As Arthur Frank writes in The Wounded Storyteller (pp. 23-24):

To think with a story is to experience it affecting one’s own life and to find in the effect a certain truth of one’s own life . . . Being responsible to these stories, thinking with them, depends on telling certain stories over and over, hearing different nuances of potential meaning as the story is told in different circumstances and at different ages of our lives.

The Beginning

After my husband's death from a ten year battle with cancer, I was beset by loss, the loss of my husband, the loss of my old life. I needed a new purpose. I also was haunted by images of patients, alone and isolated as they tried to navigate the medical maze of specialists, community hospitals and urban teaching medical centers, insurance regulations, clinical trials, endless interventions and medical decision making. Towards the end of that decade, a small seed for a new beginning was planted after a doctor remarked: "You know, you should consider becoming a patient advocate." And so in January, 2002, I enrolled in the Masters in Health Advocacy Program at Sarah Lawrence College under the expert guidance of Marsha Hurst and began my transformation from a Westchester widow to an agent for change. That summer, I took Sayantani DasGupta's popular course: "Illness Narratives: Understanding the Experience of Illness." There I found my niche in the new literary genre related to memoir and autobiography called illness narratives or pathography.

As part of the grieving process and finding meaning in my new life and in need of developing skills to help others as an advocate, I developed an insatiable thirst for these stories of suffering. They became a way for me to connect to the embodied suffering that I had recently experienced with my husband. In this class I witnessed the healing that develops from the process of writing in which patients discover their story of survival, move it from talk to the visible page, where they can recover, revise and thereby control the meaning of what has happened to them. I experienced how writing and sharing a story enables a person to feel the connection with stories that reach beyond one's own personal story, a connection to something larger than oneself. Witnessing these stories enabled me to understand the many variations on suffering and to respect the connections and the differences that each story evoked. Most importantly, I felt that I was not alone with my experience but that I was part of a community.

A Door Opens

I was hooked. Because Sayantani included a fair amount of narrative theory in the syllabus, I became acquainted with and actually quite dazzled by the writings of Rita Charon. I asked Sayantani for an introduction to the veritable source of "narrative medicine," not once but at least twice to see if I could become an intern. I also repeated Sayantani's course in the fall to take advantage of a more complete syllabus than was given in the intensive six week summer course and an additional oral history project. That winter and spring, I helped a Sarah Lawrence economics professor teach Economics 101 to inmates attending the college at the Bedford women's correctional facility. That experience fueled my interest in stories, how they are ever so singular while still so clearly part of the common human fabric.

Fortunately the next summer Rita Charon had been awarded an NEH grant to develop a curriculum to train health care providers with narrative competence. I met her and she took me on as an intern to assist in the coordination of that grant and to help in whatever way possible with the seemingly endless list of projects in which she was involved. I have never left.

The oral history project that Sayantani DasGupta assigned in that fall course began another interest and passion for interviewing and recording the stories of others, primarily those involved in some way with illness. I did a capstone project for my Masters which was to conduct oral histories of patients from the Dickstein Cancer Center. I interviewed, recorded, transcribed and wrote their interviews and gave each patient both the oral and written narratives for their own use. I was astounded by how eagerly they talked to me, sharing hours of memories, reflecting on the meaning of illness in their lives. This oral history thread has continued to be a significant part of my narrative work.

Field Work in Narrative Medicine

I have been immersed in narrative medicine since the summer of 2003. As part of Rita's NEH project, I became a member of the faculty that facilitates the annual workshops conducted by the Program in Narrative Medicine to train outside healthcare providers and others in the art of narrative competence. I have also been part of the planning process for the Masters in Narrative Medicine which begins this fall at Columbia. Based upon my fieldwork that I will describe in the next few paragraphs, my ongoing role for the Masters will be to supervise clinical internships for the students.

After I graduated from Sarah Lawrence with a Masters in Health Advocacy, Rita offered me an opportunity for my own workshop with patients. I had had a previous opportunity one summer to co-facilitate with Rita a narrative intervention with the doctors, nurses and social workers on the pediatric oncology floor at Morgan Stanley Children's Hospital (CHONY). I also had sat in on narrative rounds, a thriving biweekly group of clinicians, nurses and social workers from the oncology floor at NY-Presbyterian Hospital who wrote together about their clinical experiences and read to one another what they had written. From this experience came the idea to add the patient's voice. Rita offered me the chance to begin a narrative writing workshop that combined oncology outpatients with family caregivers and clinicians. One oncology doctor had funding from the patient foundation, Team Continuum, and an oncology social worker was eager to co-facilitate. We put up flyers and sent out the call for participants.

As a result, one Tuesday evening in September 2006, thirteen courageous people arrived on the sixth floor of Milstein Hospital in search of something called a narrative writing workshop. That first year the group was composed of all women: one oncologist, two nurses, two caregivers and seven patients. We read together Rita's book, Narrative Medicine and excerpts from illness narratives. We wrote at each monthly meeting and shared our writing, and we became a community. Let me quote from one of the members:

Do not be deceived, this is no ordinary group…There is no doubt they lost a lot, almost everything, but they found the strength to come together to talk, to write, to read, to trust again, and to continue living.

With the ongoing financial support of Team Continuum, we planned the second year, invited some guest speakers and ventured forth to see a movie together, The Diving Bell and the Butterfly.

Now at the end of our third year, our workshop has 19 members and a waiting list. We are a diverse group including patients who are in remission and patients who are in active treatment, patients who are living with chronic illness and those who are just now experiencing the pain, fear and loss of control owing to a new diagnosis or a recurrence. We have doctors, nurses and social workers; we have members who fit into several categories simultaneously: clinician, patient, bereaved persons. And we have men and women.

We have read together a wide range of work from Joan Didion to Marcel Proust; explored visual art from master paintings to comics; shared our favorite songs; and every session we write together is all in the service of using art to inspire creative exploration of the experience with chronic illness and loss.

We have expanded the program to include some daytime events that gather additional patients, caregivers and clinicians around a table making books, writing poetry, combining text and art through collage. We have put poems in the waiting rooms on the oncology floors for patients and families to enjoy and take home.

We have expanded our team of facilitators to include an artist, a poet and a writing coach who have in turn inspired members of the narrative writing workshop to put together a book, Inspiration, an anthology of poetry and prose, photography and collage. In June, we held a reading event at the hospital during which members read from the book to an audience of 100+ doctors, patients, family members, friends, and colleagues. Copies (1000) of the anthology have been dispersed far and wide to other hospitals, clinicians, families and patients. This workshop is fully funded for the coming year and the members are eagerly working on another book.

Fieldwork: Oral History, a Narrative Application

My interest in oral history has been a constant thread in the fabric of my narrative work. I am in the process of conducting a series of oral history interviews with the past president(a reign of 40 years) of Blythedale Children's Hospital in Valhalla, NY. He transformed Blythedale from a small convalescent home into the highly regarded independent children's rehabilitative hospital that it is today. The oral history thread also led me to initiate the weaving of a video story project into the curriculum at the Mt. Pleasant Blythedale School. The students at this Special Acts District School are all patients of Blythedale Hospital. This project is based on the StoryCorps model and in fact the school has become a community member with StoryCorps. Parents and children have recorded interviews in the StoryCorps booth at Grand Central Station and at the school. An oral history expert from Columbia University's oral history department has trained the teachers on the use of oral history in a secondary school curriculum. We have built a video story studio and have received a grant from Pace University to purchase professional video equipment, computer and editing software. The project has become a multi-pronged initiative incorporating the idea of story, listening, interviewing and writing throughout the curriculum giving the students the skills and opportunity to advocate for themselves, to give voice to their feelings and to utilize narrative competence for any number of creative and useful projects.

Full Circle

In "The Shawl," the narrator at the end of that saga of suffering says:

Now, gradually, that term of despair has lifted somewhat and yielded up its survivors. But we still have sorrows that are passed to us from early generations, sorrows to handle in addition to our own, and cruelties lodged where we cannot forget them. We have need to forget. We are always walking on oblivion's edge. (1)

My experience with narrative medicine and with the video story project at Blythedale has become my new story, one of survival from a tragic experience of personal loss. The sorrow is still there but something so strong and affirming as this work in narrative medicine has given me a healthy distance from oblivion's edge. For that I am most grateful.

NOTE: I found the metaphor for the title of this commentary in Sherry Reiter's new book: Writing Away the Demons: Stories of Creative Coping through Transformative Writing (St. Cloud: North Star Press, 2009) p.257.

Reference 1. Erdrich, Louise, "The Shawl". Literary Cavalcade, May 2002 54 (8): p.23.

 

Is Medical Uncertainty Necessary?

August 31, 2009 at 9:40 am

Artist: Neil Leslie

Commentary by Caroline Wellbery, M.D., Associate Professor of Family Medicine, Georgetown University Medical Center; Associate Deputy Editor, American Family Physician

Medical uncertainty is all around us

AIn medicine we are quite often confronted with 'not knowing,’ with 'choices,’A with 'multifactorial etiologies,’ and 'inconclusiveness,’ to name just a few of the states to whichA we can apply the term 'medical uncertainty.’A Although nothing new, the idea of medical uncertainty might recently have become more fashionable as clinicians have begun to ponder the limits of evidence-based medicine. As appealing as it is to have incontrovertible scientific backing for our actions in treating our patients, we often simply don’t know what to do.

A search in Pub Med using the term medical uncertainty yields several thousand articles. Of those that might be relevant to this essay, the articles range from philosophical speculations to the calibration of laboratory standards. There are articles about prognosis, about patient ambivalence, about the interpretation of guidelines and the changing scientific base of clinical practice. In other words, medical uncertainty is pervasive, perhaps astonishingly so, considering that most of us who practice medicine proceed confidently in our daily decisions and interactions. I recently asked a colleague who sees patients on a regular basis whether she ever feels uncertain as a clinician. "Sure," she said-confidently, I might add-"But a lot less nowadays than I used to."

I would submit that in daily medical practice, there is a constant measure of low-level uncertainty. This uncertainty can increase when the stakes are higher-a patient is seriously ill-or when the psychological and social context of the situation potentiates the uncertainty. In such cases, clinicians will usually seek validation or consensus from colleagues, or even from formal organizations such as ethics committees.

None of this, though, addresses the question of what, if anything, we can learn from medical uncertainty, or whether, God help us, there is any value to it. On the surface, we live by the contrary: we assume that medical uncertainty is an obstacle that prevents us from providing the best medical care. If the US Preventive Services Task Force states that evidence is 'insufficient,’ for example, in determining whether to do prostate cancer screening or not, this leave the practitioner with 'no answer,’ a situation that can be personally frustrating and legally dangerous.

But one thing I have noticed is that as long as medicine is a job, there is a tendency to focus on doing, whereas when medicine is a calling, the focus also incorporates being. So while medical uncertainty gets in the way of doing, I would argue that it actually has some utility in fostering that aspect of medicine that involves being. The reason for this, as I shall explain, is that uncertainty in medicine allows for a philosophical reframing of clinical intervention when conventional 'doing’ has little to offer. But in order to understand what exactly medical uncertainty has to offer us, we must first acknowledge that some sorts of persons have a higher tolerance for uncertainty than others.

Uncertainty and temperament

One of my favorite poems is David Gewanter’s "My father’s autopsy," because it captures so much of what, in medicine, is science, and what of it is art. The father of the poem’s title is a pathologist. When his son turns 13, the father decides that he is of an age to accompany his father to the morgue to witness an autopsy. It’s an initiation rite that invokes Jewish tradition, associating the thirteenth birthday with the advent of manhood and, by extrapolation, with the knowledge of death. But father and son have wholly different views of the world. The father sees a corpse; the son wonders about her sexuality. The father saws open the body; the son sees a jumble of metaphors. The father pulls out a pebble from the dead body, presumably the cause of death and, satisfied with the explanation it offers, replaces it. The son, though, is horrified at the disturbance of the body’s integrity. He wishes she had never said 'ahh for a doctor.’ He implies that you cannot put back a pebble as though nothing had changed.

In short, the father delights in the objective findings of the dissection, in capturing the anatomical cause of death. The son in turn thinks only of subjectivity-his own, his father’s, and the dead woman’s. He is not interested in reducing the death to a cause. He is interested in the complexity of the subject and indeed, turns his attention to his father, with whom he has a complicated relationship. His 'autopsy’ of his father yields anything but a pebble. It yields an opaque human being, as 'inward as a microscope’. The father remains elusive to the son’s tools of dissection.

What we have in this poem are essentially two types of people. The father devotes himself to clarity and objectivity. He hates mess. The son revels in uncertainty and ambiguity. The wholeness, impenetrability and multiplicity of the body are the stuff of poetry. What does this say about medical uncertainty? It suggests that much of medical uncertainty has to do with the practitioner him- or herself.A There are those who lose themselves in the objective findings and require concrete and coherent answers. Then there are others for whom the essence of inquiry relates to the dense, opaque and mysterious qualities of subjectivity. These are two realities, and I believe that physicians align themselves with one or the other, with the one important difference that unlike the poet narrating the poem, the metaphorically inclined doctor cannot discount objective reality.A But objective action and findings for the 'poetic’ physician are not what he or she finds most compelling in medicine.

Comfort with uncertainty drives specialty choice

A story, "The Save," recently published in Pulse, Voices from the Heart of Medicine tells this story.AThe surgeons devote themselves to reattaching a limb that the patient has deliberately sawed off. They ignore the psychiatric disorder that led to this self-mutilation and then are shocked when the patient tears off the repaired limb after surgery. The narrator, on the other hand, decides at that moment that he is more suited to become a physician of the 'whole’ person than a surgeon. It is perhaps telling that the narrator speaks of the 'whole’ person in the setting of this self-mutilating dismemberment. The 'whole’ presumably refers to the many factors and influences that led to the patient’s inner torment, but also echoes Gewanter’s interpretation of 'wholeness’ as something that is ultimately inaccessible, if not imponderable.

Wholeness, then, and uncertainty bear a degree of kinship, because the objectively focused physician can usually find some part of the whole that can be addressed with certainty, even when the problem of the 'whole’ remains uncertain. As a simple example, a cancerous bowel can be surgically excised, but the impact on the patient and his prognosis remain uncertain. Thus, I think it is safe to say that some practitioners are at home with uncertainty, whereas other require definitive answers, and that these differences in temperament dictate choice of specialty.

Uncertainty invites [other] answers

This leads me to an important corollary insight: if some practitioners by temperament gravitate towards medical certainty, and others gravitate towards uncertainty, then patients whose problems have certain outcomes will best be served by the former and patients whose health is rooted in ambiguity will benefit from care by a holistically oriented practitioner. The latter patient, as I try to tell medical students, is by far the most common. I see their disappointed faces as they begin to suspect-but quickly dismiss-the probability that most of what doctors do is help patients navigate ambivalence, complexity and the unknowns of their illness. This state of affairs is not as dire as they imagine. These practitioners do not lose competence or confidence in the setting of uncertainty. Rather, they ride the uncertainty as a necessary part of care, even of life, and at times, experience their richest moments in pondering its mysteries. This brings me then, to the question of whether uncertainty is necessary, or even desirable.

That the speaker’s answer to this question in David Gewanter’s poem is in the affirmative is clear from the title.A "My father’s autopsy" revels in the ambiguity of meaning: is the father dissecting a corpse (in fact that is what the poem goes on to show) or is it the father who is undergoing the autopsy (it turns out that this, too, is true, albeit metaphorically). While in medicine we cannot do without the objective treatment or cure, the absence of the interpersonal layer often leaves the patient bereft of hope or meaning. The very essence of uncertainty is 'both and.’ By acknowledging that uncertainty is an inevitable part of clinical care, the poetic, 'both/and’ type of practitioner can reframe the patient’s priorities, moving the patient away from the need for certainty to an understanding of what, in the larger scheme of things, is important.

No poem expresses this reframing so well as Veneta Masson’s "Reference Range." In this poem, the practitioner discusses lab results with a patient. Already early on, the significance of the lab results are called into question:

Your tests show

the numbers 73, 90, 119 and 2.5,

the letter A,

the color yellow,

a straight line interrupted by a repeating pattern

of steeples and languid waves

The patient balks at the explanation. The patient wants to know what the lab results mean. Are they normal, he asks. Again the clinician responds by emphasizing the numerical uncertainties. This time, she goes on to reorient the patient. We can’t know what these numbers mean, exactly, she appears to explain. But maybe their exact meaning, in the context of this visit, or this illness, aren’t all that important. Maybe the focus should be on what really is important, a focus that eludes objective medical attention. Laced throughout the poem are hints at this sort of elusive focus: the color yellow, a squiggly line. The poet concludes by saying:

Normal’s a shell game you seldom win.

Take my advice. Enjoy good health

not as your due but the blessing it is

like Spring, laughter,

death.

Conclusion

Medical uncertainty indeed takes many different forms in clinical practice, and is almost an integral part of its vocabulary. Whether they are aware of it or not, practitioners deal with uncertainty every day, and it becomes a problem mostly in serious and complex situations which require consultation with others. That being said, some practitioners are, by temperament, more comfortable with uncertainty than others, and these individuals, like the provider in Veneta Masson’s poem, can turn medical uncertainty to their advantage by redirecting patients’ priorities. So is medical uncertainty a necessity? Certainly to some technicians and specialists, it is a necessary evil. But to others, particularly in the patient-oriented specialties, medical uncertainty is also an opportunity.

The Healthcare Debate And Disability Studies

July 29, 2009 at 9:26 pm

Neil Leslie, Wellcome ImagesMedicine - diagnosis and treatment, Digital artwork/Computer graphic

Two related items in the Science Times section of Tuesday’s New York Times (July 26) drew my attention. One was Dr. Abigail Zuger’s book review of Normal at Any Cost by authors Susan Cohen and Christine Cosgrove and the other was an essay entitled "To Overhaul the System, ‘Health’ Needs Redefining," by Dr. H. Gilbert Welch. What these articles have in common is that both ask us to re-examine what is meant by "normal health." And both articles raise this issue in the context of current national discussions about runaway health care costs.

The book that Zuger reviews deals with "the medical industry’s quest to manipulate height" using growth hormone. Zuger notes that "the boundaries of ‘normal’ height are hazy, and the drug’s performance is measured only in averages." According to Zuger, the book’s authors deduce that every inch of growth gained by hormone treatment costs $50,000. As height is increasingly manipulated to satisfy social standards as well as pharmaceutical and medical profits, costs rise; of equal importance is the failure to promote social acceptance of a wide range of heights.

Gilbert Welch frames his argument more generally. The "medical-industrial complex" needs patients and so it defines health as "the absence of abnormality." Increasingly, the range of normal has been narrowed. But "more often than not, the value of treating . . . mild abnormalities is simply not known" and physicians in training "are increasingly confused about who is really sick and who is not."

Questions about the definition of normal, about who gets to define "normal," and about the medicalization of the body are at the core of disability studies scholarship. So it would seem that in the debate about health care funding and cost control, some of this scholarship needs to be injected. Policy wonks and legislators should be aware of this body of work. In the context of these two articles we could point them to the work of those who have addressed these issues for more than a decade. For example, Robert Aronowitz demonstrated in 1998 that disease definitions are influenced by the vested interests of physicians, researchers, and policy makers in the biomedical enterprise and are not immutable biological entities, disconnected from their cultural context (Making Sense of Illness: Science, Society, and Disease. Cambridge: Cambridge University Press, 1998, pp 11-14).

Lennard Davis discussed statistical norms: "When patients are treated they are not treated as individuals but as instantiations of norms. . . While normalcy requires that I appear in person as an individual before my health care giver, I am treated by reference to laboratory and statistically determined medical norms. A good deal of the energy of being alive becomes devoted to this imperative to conform physically." (Bending over Backwards: Disability, Dismodernism and Other Difficult Positions. New York: New York University Press, 2002, pp. 115-116).

Kathryn Pauly Morgan developed a medicalization model of pregnancy (conception, gestation, and birth) in North American culture. (Contested bodies, contested knowledges: Women, health, and the politics of medicalization. In S. Sherwin, ed., The Politics of Women’s Health: Exploring Agency and Autonomy. Philadelphia: Temple University Press, 1998, pp. 83-122.)

Susan Wendell outlined the social construction of abnormality and disability: "Disability is socially constructed through the failure or unwillingness to create ability among people who do not fit the physical and mental profile of ‘paradigm’ citizens." (The Rejected Body: Feminist Philosophical Reflections on Disability. New York and London: Routledge, 1996, p. 41).

Also relevant are "The Meaning of Normal" by Philip Davis and John Bradley in What’s Normal?A eds. Carol Donley and Sheryl Buckley (Kent, Ohio: Kent State University Press, 2000, pp. 7-16) and selections from The Tyranny of the Normal, eds. Carol Donley and Sheryl Buckley (Kent, Ohio: Kent State University Press, 1996)

And all of us should remember Paul Starr‘s important book, The Social Transformation of American Medicine, published in 1982.

Felice Aull

Summer Blogging: Traveller’s Joy

July 20, 2009 at 3:58 pm

Traveler's Joy

We are taking a break from our regular essay commentaries until September.A In the meantime, there will be occasional short postings, mostly by me (Felice Aull). This image of the plant, Traveller’s Joy, invokes this summer interlude — the pleasure of enjoying gardens, parks, nature (at least in the northern hemisphere) and of vacation traveling, but also the possibilities for intellectual travel, creative travel, and other explorations beyond familiar borders. Here are some thoughts to begin with.

We learned today that author, Frank McCourt, died on Sunday, July 19.A His memoir (creative nonfiction?), Angela’s Ashes, is one of the most compelling, absorbing, and entertaining books that I have ever read (and I read a lot). I was moved to annotate it for the Literature, Arts, and Medicine Database as soon as I finished reading it in 1996, and before it won The Pulitzer Prize and the National Book Critics Circle Award. In addition to being well-crafted and devastatingly sad, it was witty-a rare combination. But the book and its author pulled me into their orbit for additional reasons.

McCourt had taught for years at Stuyvesant High School, an intellectual rival of my own alma mater, the Bronx High School of Science, and located just a few blocks from where I live — until it moved to its present location near Battery Park City. Not only that, but somehow I found out that Frank McCourt LIVED a couple of blocks away from me, in a nondescript apartment building. I wanted to contact him to invite him to be a speaker in the Literature, Arts, and Medicine Speaker Series sponsored by NYU School of Medicine, where I taught and organized the series. He could speak, I thought, about deprivation and resilience, humor and illness, writing and the self, the human condition. Among the medical students and faculty he would be addressing were many who had graduated from Stuyvesant High School, and some who even remembered him as their teacher.

I don’t remember how-probably just by searching the phone book-but I found his telephone number. When I called, a pleasant woman answered the phone and said she would give him my message. I waited several weeks without hearing from him and phoned again. This time, there was an answering machine that gave out very little information. Apparently, the book had taken hold, publicity was churning out, and his life was no longer confined to East 18th St. His gain, and our loss. I never read the books he wrote after Angela’s Ashes — I didn’t want to spoil the pleasure that book had given me.

Celebrating July 6

July 6, 2009 at 10:21 am

Scan of an article -

Commentary by Bert Hansen, Ph.D., Professor of History, Baruch College, The City University of New York. Author of Picturing Medical Progress from Pasteur to Polio: A History of Mass Media Images and Popular Attitudes in America (Rutgers University Press, 2009).

In people's minds, July 6 rings no bells. It lights no anniversary fireworks. Yet we all live in a world of new discoveries, headlines proclaiming new cures, and the persistent expectation that new advances will keep coming. Those key features of the modern world were born on July 6, 1885, in a revolutionary shift in ordinary people's expectations. An old-style medicine that honored white-haired doctors and traditional practice at the bedside was quickly replaced with one characterized by novelties born in laboratories.

The atomic age is readily dated to August 6, 1945, when the bomb exploded over Hiroshima. Biology celebrates November 24, 1859, the publication date for Charles Darwin's Origin of Species. Molecular biology celebrates 1953 for the journal article in which James Watson and Francis Crick proposed their double helix model for the structure of DNA molecules. In 1955, headlines blared "Victory over Polio: Salk's Vaccine Works." Yet Salk's shots were not the start of laypeople's enthusiasm for medical advance, they stood in a tradition that began with another kind of injection in the late nineteenth century.

The medical revolution began very quietly in Paris on July 6, 1885, with the first human test of shots to prevent rabies a a relatively uncommon, but widely feared and absolutely fatal disease. Nine-year-old Joseph Meister, mauled on July 4 by a rabid dog, received the first of thirteen injections with a vaccine not yet tested in humans. Louis Pasteur, who developed the remedy, was nervous, and none but his most trusted laboratory associates were present. For about three months there was no publicity.

But within six months a largely caused by events in the United States a headlines around the globe carried news of a medical triumph such as the world had never seen. Children threatened with a horrible death from rabies were saved by these new injections. For the miracle cure, thousands of people bitten by dogs and wolves flocked to Paris from the Americas, eastern Europe, north Africa, even Siberia.

Media coverage in the United States played a unique role in creating a popular enthusiasm for the cure and a new idea of medical progress, both here and aboard. New tools of journalism were at hand: banner headlines, the reporter's interview, the human-interest story. Cut-throat competition among the penny papers produced an incessant drive to collar readers with exciting stories and to grab them again the next day with new developments.

Story-hungry papers were ready to pounce in December, when little children in the streets of Newark were bitten by a mad dog and a local doctor's letter to the editor suggested they be rushed to Paris for the new cure a with donations from the public if their parents could not afford it. Within hours factory employees were collecting loose change and delivering it to the doctor's office. Within two days, papers as far distant as Chicago and St. Louis reported the bites, the donations, and a trip to Paris in the offing for four working-class boys. The story was an editor's dream: innocent children threatened by an agonizing death, public charity, the problem of stray dogs, doctors and scientists to be interviewed, and a voyeuristic story of the boys' transatlantic voyage

Artists produced sketches of the boys, the dogs, the local doctors, M. Pasteur, and the steamship. Papers added editorials on science and long articles about Pasteur's earlier discoveries. The over-the-top coverage was quickly parodied with color cartoons in the weekly humor magazines, Puck and Judge. Much of the news coverage was silly and might have been ephemeral but for the fact that there emerged within it one entirely unprecedented image a the heroic scientist creating medical advances through laboratory research. The public became religiously devoted to this figure.

A rabid dog in Newark produced something no publicist could have achieved. And while the media bonanza was most striking in the United States, medical advance gained similar attention in other countries through the new rabies shots being given in Paris. Within three years, world-wide donations from schoolchildren and from princes built the Pasteur Institute in Paris, followed soon by a score of daughter institutes around the world.

Last year when two Pasteur Institute scientists received the Nobel Prize in Medicine for their identification of the virus responsible for AIDS, the world applauded them for a major breakthrough of modern medicine, a discovery that depended on a tradition just a little more than a century old, the powerful institutionalized process of research and development.

It all started when a boy was injected with weakened virus to save his life. He lived, he thrived, and he became a media celebrity.

In appreciation for rabies shots a but even more for the role of the press in creating the new idea of medical progress, let us all celebrate July 6.

The Family Portrait Project

June 29, 2009 at 10:57 am

deformities.jpg

Commentary by Mary Spano, Medical Photographer, The Institute of Reconstructive Plastic Surgery, NYU Langone Medical Center. Spano's work is on exhibit from June 29-August 31 in the Smilow Gallery at NYU School of Medicine. Free and open to the public.

In October of 2006 I joined the team at the Institute of Reconstructive Plastic Surgery at NYU Langone Medical Center, as its medical photographer. At the time, I was a professional photographer with a 20-year commercial background. In addition, I had worked as a Radiologic Technologist over the years to keep my photography career going, but I wasn't sure what medical photography was. I soon found out that I had gotten my "dream job." It combined everything that I loved about photography and knew about medical imaging. My job is to photograph people with facial differences, mostly children, and to provide diagnostic images for our doctors to plan surgeries that change those children's lives.

In the beginning I photographed pre and post surgical protocols. Many of our patients are young and vulnerable; they are apprehensive about everything "clinical." I began building my studio as a child friendly environment. I brought in child-sized posing chairs, dancing toys, and bubble machines - anything that would make the children comfortable enough to obtain the diagnostic photographs that the surgeons needed to plan their surgery.

Then one day around Christmas 2008, I was photographing a small child who was particularly apprehensive about letting go of Daddy's hand and I asked him if he wanted Daddy and Mommy in the photo with him. He said yes, and the "Family Portrait Project" was born. I took that first portrait not knowing what it would mean to the families or our department. Here, our families can sit for a portrait in a private setting, without any inhibition. Many of our families might not otherwise have a family portrait. These portraits are now displayed at the Institute in the gallery in our conference room.

The portraits have become the face of the Institute. They also help the staff illustrate to new families that whatever they may face along their path, they have the support of everyone at the Institute as well as the families we treated before them.
Working at the Institute is the most humbling and rewarding experience that I have ever had. I enjoy every day, and look forward to continuing to illustrate the incredible work the Institute does to transform the lives of children with facial differences.

Locating Narrative In Medicine’s Moral Domain: Notes (Musical And Otherwise) From A Recent Presentation

June 15, 2009 at 4:19 pm

A Group of Musicians

Commentary by Martin Kohn, Cofounder and Senior Associate for Program Development, Center for Literature, Medicine and Biomedical Humanities at Hiram College, and retired faculty, Northeastern Ohio Universities College of Medicine

My wife is a nephrologist. She loves kidneys (and how they function) almost as much as she loves me. We recently celebrated our 23rd anniversary. She's a deductive thinker par excellence. I'm a lateral thinker to the nth degree. When we argue she'll often exclaim, "I can't follow your train of thought." "What train?" I reply earnestly. Recently, she asked me (again), "can you define narrative for me?" "Not yet," I replied, buying a little more time.

In spite of working in the medical humanities for nearly 30 years I continue to struggle with explaining just what narrative is and how it permeates medicine's moral domain. So I recently agreed to a request to present grand rounds to the Bioethics Department at the Cleveland Clinic, forcing myself to ransack old notes and articles and catch up with at least a few developments in the field. I offer below a sampling of my presentation. The through line was:

WORDS/STORIES——————-PERSONS———————-COMMUNITY

WORDS/STORIES

I began this portion of the presentation with numerous claims about the centrality of words and stories in our lives: that they are as constitutive of the self as are our genes; that they preserve "the teller from oblivion." (1); that they are the foot soldiers of meaning; that they "do not simply describe the self, they are the self's medium of being. " (2); that narrative is a conveyance in which and through which we (and our words and stories) confront time, and that ultimately, meaning and sense filled words and stories, into which we are born and which are temporally borne by us, become our constructed truths about the world (noting that the root of the word narrative, "narr/gno," is after all, knowledge.).

Finally, I claimed that words and stories also make community possible. Community being formed by which bits of experience we choose to string together (to re-member, both individually and communally) and which we re-present as plotted events, connecting us to the unfolding drama of our shared lived experience.

Further exploration of the centrality of story in the work of physician-writers Robert Coles, Rachel Naomi Remen and Rita Charon was followed by a synopsis of creative writer, Scott Russell Sanders' essay, "The Power of Stories" (3).

PERSONS

After a brief exploration of Cassell's notion of "topology of person," (4), I focused on a more poetic treatment of the aspects of the person that appears in a poem by Billy Collins, "The Night House." The poem reveals the body's role-as "the house of voices"- in the experience of the person who lives in the moral lifeworld as that body, and who "Sometimes puts down its metal tongs, its needle, or its pen/To stare into the distance,/To listen to all its names being called/Before bending again to its labor" (5).

These voices (heart, mind, soul, conscience) in the body's house are arrayed below (with attributes I provisionally assigned them) where they serve as elements of the first of three tributaries flowing into moral personhood.

First tributary: THE HOUSE OF VOICES /IN THE EMBODIED PERSON/ IN THE MORAL LIFEWORLD

•The open (feeling) "heart"
•The curious (improvisational) "mind"
•The seeking (animating) "soul"
•The silvery (calculating) "conscience"

Second tributary: EXPRESSIONS OF MORAL REFLEXIVENESS/OUR MORAL BEING IN THE WORLD

I shared with my audience a most delicious description of "character" which is, I believe, the primary vehicle through which moral reflexivity operates. The excerpt below comes from the novel, Mrs. Ted Bliss, by Stanley Elkin:

the constant, minute-to-minute routine of putting together a character, assembling out of little notes and pieces of the past-significant betrayals, deaths, yearnings, successes, meaningful disappointments, and sudden gushers of grace and bounty- some strange, fearful archaeology of the present, the Self to Now, as it were, like a synopsis, some queer, running quiddity of you-ness like a flavor bonded into the bones, skin, and flesh of an animal.

Third tributary: REFLECTIVE PRACTICE/DOING MEDICAL ETHICS OR BIOETHICS THROUGH PARTICULAR FRAMEWORKS

A (partial) list of the reflective frameworks appears below:

•Juridical: Study of the rational application of principles as action guides. Morality is seen as a body of knowledge. (7)
•Narrative: Study of voice and authority, point of view, coherence of story, co-construction of story, narrative frameworks of illness stories, etc. Morality is seen as a continual interpersonal task done by all in the community. (7)
•Care: Study of what empathy calls forth from us
•Feminist: Study of systemic/historic power imbalances and calls to challenge those imbalances
•Communicative: Study of the distortion of free communication /attempts to remediate those imbalances
• Naturalized: "Minimally, naturalism in ethics is committed to understanding moral judgment and moral agency in terms of natural facts about ourselves and our world." (8).

Combining these tributaries into EMBODIED BEING AND DOING produces movement, a kind of flowing moral lifestream that conveys a style or action that contains a certain musicality to it. So I searched for two musical examples to visually and aurally illustrate what I meant by musicality. The first example is a rendition of Johnny One Note (The ads will disappear after about 30 seconds, if you try to remove them the video starts over). The second example features the song Libertango by Astor Piazzolla (originator of the Nuevo Tango style, who plays the bandoneon, a folk instrument related to the accordion, with an ensemble including Yo-Yo Ma).

Johnny One Note is a show tune from the 1937 Rodgers and Hart musical Babes in Arms. Title, lyrics and in this instance, performing style, all align (for me) as a critique of the hegemonic "principlist" approach to moral analysis of medical issues. Featured in this rendition of Johnny One Note is Johnny Mathis (as an alpha male!) surrounded by the adoring Lennon Sisters, backing him to the hilt as he gives his all for ONE NOTE (autonomy?). In contradistinction, Libertango is polyrhythmic, featuring layered and shifting voices and is multi-genre, a mix of classical and jazz and folk music. It represents well the "multiple tributaries" approach that revels in the complexity (and beauty) of the moral lifeworld that I advocate.

COMMUNITY

To finish my presentation, I turned to two works, "The Narrative Quality of Experience, by Stephen Crites (9); and Gerald Gruman's A History of Ideas about the Prolongation of Life (10). Stephen Crites was a philosopher and a scholar of religion with special interests in the connection between narrative and experience. His work emanates from and illuminates the point at which experience and action interpenetrate, where narrative becomes the vehicle through which consciousness temporally expresses experience; and where simultaneously our actions take on a particular musicality in response to the expressed stories we live our experience out of. (How do we label the iconoclast/the oddball, one who doesn't live by the conventional expectations or stories of our culture? We do so by saying that they "march to the beat of a different drummer.")

Most pertinent to the focus on community are Crites' contentions about sacred and mundane stories. He explains: "people live in [sacred stories which] are anonymous and communal… [that] orient the life of people through time, their life-time, their individual and corporate experience and their sense of style, to the great powers that establish the reality of their world…[ this makes, he claims] every sacred story a creation story…the story itself creat[ing] a world of consciousness and the self that is oriented to it" (pp. 295-6). He further explains that these sacred stories are always present in some way in the mundane stories [and that] "people are able to feel this resonance; because the unutterable stories are those they know best of all" (pp.296-7). He believes that "the stories people hear and tell, the dramas they see performed, not to speak of the sacred stories that are absorbed without being directly heard or seen, shape in the most profound way the inner story of experience"(p. 304).

Crites anticipated (he was writing during the late 1960's) a conversion of consciousness that reflected a cultural shift into post-modernity. Evidence for the shift would be found, he explained, in "a traumatic change in man's story" (p. 307), wherein the stories to which he has "awakened to consciousness must be undermined… [and] through a new story both the drama of his experience and his style of action must be reoriented… he must dance to a new rhythm… [for] the very cosmos in which he lives is strung in a new way" (p. 307).

I took Crites' notion of sacred stories and shift of consciousness and set them within the work of another philosopher, Gerald Gruman- challenging us to consider that the shift in consciousness that Crites was sensing about 40 years ago, has now reached a critical point.

In his classic work, A History of Ideas about the Prolongation of Life (published five years prior to Crites' article), Gruman provides ample evidence of the human yearning for immortality, citing numerous examples across time and cultures; however, he also describes an alternative historical-cultural phenomenon: acceptance of our body's limitations. He presents his evidence of these two urges through two conceptual domains: the Meliorist camp, i.e. the 'we can continuously improve the human condition' folks, and the Apologist camp, i.e. the 'we need to accept ourselves the way we are' people.

These camps, and both of these human urges, are in tension- and I would argue are competing sacred stories about immortality. The meliorist camp promotes solipsistic immortality; the apologist camp supports species immortality. H. R. Moody, philosopher and humanistic gerontologist, has offered two similar framing concepts: one, aligned with a sacred story of progress and human control over nature, he labels 'techno-utopian mastery'. (11) Aligned with the sacred story from the apologist standpoint of mystery or acceptance of our place in the natural order of the world is his 'ecological vision of aging'a"where youth and age are…. accepted as part of the natural life cycle" (p. 33).

AIA offered to my audience a neologism to describe a synthesis of the two sacred stories -the one grounded in mystery and reverence, the other grounded in mastery and control. The word I coined is eco-meliorism. It grew out of a new sacred story, the one to which I believe our consciousness is awakening- sustainability- and which I define as the careful (even slow) movement toward human betterment in light of human presence in ongoing, interrelated natural systems.

Sustainable Health

There is evidence that we in medicine (and our larger community) are beginning to live within the sacred story of sustainability, developing interesting syntheses that emanate from an eco-meliorist approach. I would include in this list hospice and palliative care, the Eden Alternative in nursing homes, and the Planetree organization. There's also movement toward the sustainability story in science- Bioneers (whose motto is "revolution from the heart of nature") , green chemistry, and the adoption by some of the "precautionary principle." In our larger society there are other examples of eco-meliorism including the slow food movement and even a call for slow money, such as that advocated by Woody Tasch. (See his book, Inquiries into the Nature of Slow Money. Investing as if Food, Farms, and Fertility Mattered).A All of these endeavors point toward a new sacred story of sustainability, toward stringing our cosmos in a new way, toward waking up into a new consciousness, toward marching to the beat of a different drummer.

Wallace Stevens wrote the poem "Six Significant Landscapes" nearly 100 years ago (12). I ended my presentation (and now this blog entry) with its final verse and with a question: How might we live and practice and think differently if we lived in different "rooms", if we changed not only our physical habitat, but also our narrative habitat? (And now, I think I'll grab a glass of wine, put on my sombrero, and read the poem to my wife….)

Rationalists, wearing square hats, / Think, in square rooms, / Looking at the floor, / Looking at the ceiling. / They confine themselves / To right-angled triangles. / If they tried rhomboids, / Cones, waving lines, ellipses — / As, for example, the ellipse of the half-moon — / Rationalists would wear sombreros.

References

1. Portelli, Alessandro. The Death of Luigi Trastulli, and Other Stories: Form and Meaning in Oral History. (Albany, N.Y. : State University of New York Press) 1991, p. 59

2. Frank, Arthur W. The Wounded Storyteller: Body, Illness, and Ethics. (Chicago: University of Chicago Press) 1995, p. 53

3. Sanders, Scott Russell. The power of stories. Georgia Review, 1997; 51:113-26.

4.Cassell, Eric J. The Nature of Suffering and the Goals of Medicine. (New York: Oxford University Press) 1991, p. 47

5. Collins, Billy. Picnic, Lightning. (Pittsburgh, Pa.: University of Pittsburgh Press) 1998, p.80

6. Elkin, Stanley. Mrs. Ted Bliss. (New York: Hyperion) 1995, p. 55

7. Lindemann Nelson, Hilde. Context: backward, sideways, and forward. In Charon, R., Montello, M., eds. Stories Matter: The Role of Narrative in Medical Ethics. (New York: Routledge) 2002

8. Walker, Margaret Urban. Introduction: Groningen naturalism in bioethics. In Lindemann, H., Verkerk, M., Walker, M.U., eds. Naturalized Bioethics: Toward Responsible Knowing and Practice. (Cambridge and New York: Cambridge University Press) 2009, p. 1

9. Crites, Stephen. The narrative quality of experience.A Journal of the American Academy of Religion, 1971: 39:291-311

10. Gruman, Gerald J. A History of Ideas about the Prolongation of Life: The Evolution of Prolongevity Hypotheses to 1800. (Philadelphia: American Philosophical Society) 1966

11. Moody, H.R. Who's afraid of life extension? Generations, 2001-02; xxv: 33-37

12. Stevens, Wallace. Harmonium (New York: A. A. Knopf), 1993, p. 100

Of Current Interest

June 8, 2009 at 3:09 pm

While we are working on the next blog commentary, check out a Lancet article by Jane Macnaughton, "The Dangerous Practice of Empathy," a perspective on the art of medicine. Macnaughton argues that "true empathy derives from an experience of intersubjectivity and this cannot be achieved in the doctor-patient relationship." "It is potentially dangerous and certainly unrealistic to suggest that we can really feel what someone else is feeling. It is dangerous because outside the literary context, where we are allowed direct experience of what a fictional patient is feeling, we cannot gain direct access to what is going on in our patient’s head."

My take is that literature (and art and film), by giving access to fictional lives, prepares the mind for analogous situations and lives, so that one can imagine, however imperfectly, experiences to which one has no direct access and contemplate their significance.

Another online commentary of interest is posted at The University of Connecticut’s Advance Archive: "Prenatal testing for Down Syndrome raises ethical concerns", by Chris DeFrancesco. The commentary refers to a paper published by Peter Benn and Audrey Chapman in JAMA, May 27. They raise concerns about the potential consequences of noninvasive prenatal diagnosis, with regard to termination of pregnancy. Of course, it’s always important to read the original article, "Practical and Ethical Considerations of Noninvasive Prenatal Diagnosis", which I quote from here: " . . . noninvasive diagnosis might result in a substantially reduced prevalence [of Down Syndrome] and in the process subtly alter attitudes about the acceptability of continuing an affected pregnancy. Doing so could diminish understanding and support for affected individuals and their families and increase the stigma associated with having a genetic disorder. Moreover, noninvasive prenatal diagnostic testing for Down syndrome would be a first step toward screening for other genetic disorders and birth defects and potentially for physical and mental traits."

I call your attention also to our Regional Events section of this blog — there are many events of interest relevant to medical humanities that are posted here.

Felice Aull

Interesting Lectures Online

May 27, 2009 at 12:28 pm

The University of North Carolina School of Medicine’s Bullitt History of Medicine Club held numerous interesting talks in 2008-2009 that are available online at their site.

Felice Aull

Scarred For Life. Physically, Not So Much Mentally

May 18, 2009 at 11:11 am

Ted Meyer, mono-prints

Commentary by Ted Meyer, Los Angeles-based artist. Meyer’s work is on exhibit through June 15 in the Smilow Gallery at NYU School of Medicine. Free and open to the public.

Every time I travel, people ask me if I expect to incorporate my travels into my painting. Will there be an Indian elephant or a zebra showing up in my work? I tell them all that I am not that sort of artist. No landscapes or sunsets for me. I explain that my work comes from a very internal place. For years it was Ted-centric and only dealt with my struggles to have a normal day-to-day existence. I was oblivious to elephants in my art though I have enjoyed riding them.

Since my childhood, I have created work about being sick or in pain. It all started with the "Art Lady" who brought her art cart to my hospital bed and suggested I make compositions with band-aids and IV tubes. Mixing illness and art seemed a normal confluence.

When I was older, I painted pained figures and broken bones. Progress I guess. Self directed art therapy, for sure.

After new treatments, joint replacements, operations and infusions I felt that I was pretty much normal and found myself a bit lacking in artistic direction. I didn't feel it was honest to continue making art about being sick. I needed a new direction but nothing came to me and I refused to draw sunsets.

Now much of my work deals with others because of a chance meeting over 10 years ago. That was when I learned that a life can be changed by meeting one special person at just the right time. For me that person unexpectedly arrived at one of my art openings. It was a very Los Angeles kind of affair. I was in conversation with celeb guest Henry (The Fonz) Winkler and Candice Bergen when SHE rolled into the gallery, A beautiful woman whose grace only seemed enhanced by her wheelchair. She wore a stunning black dress with a low back. I couldn't help but notice the long scar that graced her back.

Over time we had many conversations about our situations. She had fallen from a tree while a counselor at a summer camp. Still, she performed with a noted dance company and has had many roles on television and on stage. I was born with Gauchers disease and spent many years in some level of pain or discomfort. We shared a common acceptance of our differences to that of the "normal" population.

Before this meeting, I had never thought much of my own scars and I had many from multiple joint replacements, a splenectomy and the normal childhood emergencies and accidents. Most of my early artistic career focused on me, my body and my illness which I visualized as a very internal thing. I created images that reflected on the damage done to my bones and the mental pressure to choose treatments with new and experimental drugs.

During one of our talks, we discussed how her condition was obvious yet mine was totally hidden as long as I was dressed. We talked about our scars and what they represented and what it meant to allow others to view them.

I became focused on her scar as a way to tell a story. How rods had been inserted and removed from her body. How each operation on her back left additional markings. How the scar made visible the exact place her spine had been damaged. Her scar was not just a marker of her ability but rather a road map of what made her life unique. It wasn't just a scar. It was HER scar. Something that no one else had. Not only did it make her physically unique but emotionally different. If I no longer had anything to say about my medical condition maybe I should make a statement about how I viewed other people's lives and conditions. Maybe I'd become a documentarian. An artistic Studs Terkel.

Scars mark a turning point in peoples' lives - sometimes for good but often otherwise. Each scar comes with a story. Why is it there? Would the person have died without surgery? How did the "scarring event" affect them emotionally? Scars can mark entering into or out of a disability. Going from cancer to health, limited mobility to full movement. They freeze a moment in time, a car accident or gun shot.

My mono-prints, taken directly off the skin of my model-subjects are portraits of those events that changed their lives. I accentuate the details of the scar with gouache and color pencil.

My hope is to turn these lasting monuments, often thought of as unsightly, into things of beauty.

Note:AA Sections of this commentary have been excerpted from the artist’s catalog for Scarred for Life.