Archives for category: Health
Photo by mconnors, via morgueFile

Photo by mconnors, via morgueFile

In our western, disease-care system, the power of stories has been pushed to the periphery, even though they are central to the spirit that promotes or undermines our healing. Fortunately, a whole field of narrative medicine is blossoming. Rachel Naomi Remen was one of the first people to introduce me to the field, then Rita Charon and Jack Coulehan.

After I moved to British Columbia, I met Arthur Frank and read his powerful book, The Wounded Storyteller: Body, Illness, and Ethics. I became aware of a B.C. program to honour stories, the Patient Voices Network and Columbia University’s Narrative Medicine program.

So when James Borton contacted me about his new book, The Art of Medicine in Metaphor – A Collection of Poems and Narratives, he piqued my interest.

Borton is a teaching associate in the Department of English at Coastal Carolina University. He is also a blogger (All Heart Matters) and writer on medical humanities. Here’s how he describes the incident that prompted him to collect the poems and stories of people’s experiences with health care:

Three years ago I learned a painful lesson about how a patient bleeds a story. Following a triple bypass, I emerged after nine dark days from a coma after losing all of my blood from a ruptured coronary artery. It’s no wonder that my call to others to learn about their broken health stories met with remarkable responses.

In 2011 he organized a symposium for physicians and professors, “The Art of Medicine: Metaphors & Narratives.” And in courses and workshops, he gathered the stories of medical personnel and patients. Now he has published an anthology of illness narratives, told through stories and poetry. In his foreword to the book, Dr. Coulehan writes:

The Art of Medicine in Metaphors represents the process of encountering illness by dividing it into three stages—recognition, tension, and transformation—that form sequential sections of the book. While there is often overlap, the stages constitute a useful way of conceptualizing the material. First, the person’s familiar world is swept away. A wave of new images and alien feelings overwhelms them and he or she must attend to (recognize) the changed reality. Second, the person’s language, beliefs, and emotional resources confront this new world of illness, creating tension. Finally, but unfortunately not always, the person emerges with greater self-understanding (transformation). The dynamo that drives this process is language with many resources—mental, emotional, verbal, and written.

Borton sent several searing excerpts from the book, including Debra McQueen’s story of a young man dying of AIDS and his determination to travel to the Philippines to see a faith healer. Sam Watson contributed a poem about the moments between being wheeled into the operating room and succumbing to ether, ending in a breathtaking moment of clarity. Patricia Dale’s story of depression and self cutting was painful to read, yet ended with hope.

The seed of healing lies within our illness narratives. Our bodies eventually succumb to age, illness, accidents and death. No matter how much our medically trained allies patch our bodies, we all carry around an expiry date. We give meaning to our fleeting journey through our stories.

Barry Lopez described it well in Crow and Weasel:

The stories people tell have a way of taking care of them. If stories come to you, care for them. And learn to give them away where they are needed. Sometimes a person needs a story more than food to stay alive. That is why we put these stories in each other’s memory. This is how people care for themselves.

Lips on face stone sculpture

Lips on face stone sculpture, photo by Photos8.com


David Korten’s writings often move me. They always make me think. He is board chair of YES! Magazine, a publication that always poses solutions instead of just pointing out problems.

In the August 8, 2011, online edition, he throws out a challenge to culture workers. He calls on those in media, education, religion and the arts to use their influence to tell a new story. He writes, “For better or worse, you are engaged in crafting and propagating the cultural stories that serve either to legitimate the devastation the old economy causes or shine a light on the possibilities of the new economy.”

Whether we stand in front of an audience or work in the broad field of organizational narrative, storytellers bear a responsibility that is, at the same time, an exciting opportunity. Our stories can shore up a status quo that keeps the world teetering on the brink of global disaster. Or they can engender a sense of possibility that will lead us to something sane and life-affirming.

I’m reminded of the four levels folklorist Barre Toelken once told me characterized Navajo storytelling. That was many years ago, and my memory has likely shifted the explanations to fit my own sense of the impact of storytelling. But roughly, these are the four levels:

  • Entertainment: The first task of the storyteller is to capture the audience’s imagination.
  • Education: Once imagination is focused, learning can begin.
  • Spirituality: Here the possibility of transformation begins.
  • Witchcraft: Only a shaman can safely tell stories at this level because they unleash forces that cannot be contained in less skilled hands.

From many directions we hear stories that seem to have skipped right over the third level and are wreaking havoc on our environment, economies, and family lives. They are told by culture workers who have sold their talents for pieces of silver, skilled liars whose arguments play out in election campaigns and corporate marketing.

Korten’s charge to artists is one storytellers can answer:

“Talented artists can help us see beauty, meaning, and possibility where it may otherwise escape our attention. They can take us on an imaginary journey to a future no one has yet visited to experience possibilities we may not have imagined. Our movement needs the contribution of millions of artists devoted to liberating human consciousness.”

The YES! essay is based on the 2nd edition of David Korten’s important and encouraging book, Agenda for a New Economy: From Phantom Wealth to Real Wealth.

For the Inuit of Rigolet, Nunatsiavut, Labrador, ignoring global warming is not an option. As winters warm and ice melts, their traditional ways are threatened. The Inuit have become one of the canaries in the climate-change coal mine. In the memories of elders are stories of change and loss that can help the rest of the world understand how a shifting climate will affect our spiritual, emotional, mental and physical health.

So in 2009-2010 First Nations and Inuit Health Branch (Health Canada) funded “Changing Climate, Changing Health, Changing Stories”. This was a qualitative research project to examine “the impacts of climate change on physical, mental, emotional, and spiritual health and well-being” (from Ashlee Cunsolo Willox’s project Web site).

Health Canada has understood the power and importance of stories to community well-being for decades. They have been in the forefront of employing narrative evaluation and research to understand social phenomena. So it is not surprising they chose to support this digital storytelling project.

Beyond the immediate focus of looking at the impacts of a changing climate, the project has led to development of a digital storytelling center in Rigolet and the hope this remote community can become a leader in showing how community narratives can preserve the past and help create the future.

Read more:

Perhaps the saddest reflection of all is this: “The stories we tell of today will one day be the stories of the past.”

 

 

Stethoscope

Doctor and patient in City Hospital Tuberculosis Division, 1927 (Item 2721, Engineering Department Photographic Negatives (Record Series 2613-07), Seattle Municipal Archives, from Flickr Creative Commons)

The invention of the stethoscope spelled the end of story-based medicine. That claim caught my attention when I was listening to White Coat Black Art on CBC. Dr. Brian Goldman, the show’s host, was interviewing Stanley Reiser, a medical historian.

In his 2009 book, Technological Medicine: The Changing World of Doctors and Patients, Reiser wrote, “Before stethoscopes, the coin of evaluation was words—the doctor learned about an illness from the patient’s story of the events and sensations marking its passage.”

Diagnoses were often made via letters. Patients wrote detailed descriptions of their symptoms, the remedies they had tried, and their emotional state. Not every physician was comfortable with this. Some complained of patients’ inabilities to accurately describe their illnesses. Others chided doctors for subtly guiding the narratives and missing the correct diagnosis.

In 1816 René Laennic, a 35-year-old French doctor, invented an instrument that would allow him to listen to a woman’s chest without violating her modesty. The stethoscope quickly became popular and “took the mantle of illness out of the hands of patients and placed it in the doctor’s orbit.” (Reiser)

When Dr. Goldman interviewed him for White Coat Black Art, Reiser said the stethoscope “led to a seismic shift in how doctors evaluated illness and their relationship with the patient, which changed as they became more interested in the evidence from the body and less interested in the evidence from the story.” The new technology “made doctors more interested in the physical findings of disease than in the life of the patient.”

Reiser is concerned that over-reliance on technology has lessened physicians’ openness to the patient as a whole person rather than a collection of symptoms. But there’s a movement toward storytelling in medicine, generally referred to as “narrative medicine”.

Narrative medicine is, in many ways, a return to pre-stethoscope days. Dr. Rita Charon, who coined the phrase in 2000, describes it as “medicine practised by someone who knows what to do with stories”. In “What to do with stories: The sciences of narrative medicine”, she writes, “Whether sick or well, the reader of an illness narrative is summoned by the author to join with the teller—to form community that can combat the isolation of illness.” [Canadian Family Physician August 2007 vol. 53 no. 8 1265-1267]

Illness is a lonely journey, particularly when it’s chronic or when the impact is life threatening. It’s lonely for the person who is ill and for those who are caretakers. Narrative medicine takes this into account, placing the illness in the context of a life rather than the narrow confines of symptoms.

“I can’t tell a story,” he said. “My memory’s gone. I’m just here to listen”

The man sat on his motorized wheelchair, in a workshop on telling stories. I remember his jaunty cap and the fringe of grey hair around his ears and the back of his neck. We were at the Tulsey Town Storytelling Festival in Tulsa, Oklahoma. I was giving the group some tips on crafting a compelling tale from the flotsam and jetsam of their lives.

We did some exercises to stir their creative juices. I wanted them to leave with one good story they could wow their friends with, some gem mined from the ore of their lives. We worked at chipping away extraneous detail until only the shining core remained.

They all tried and most were eager to share their polished stones. The man in the wheelchair listened. His eyes were lively. But he couldn’t handle any of the exercises. They were tapping into the labyrinth of his short-term memory. That part of his brain was a jumble. Words dropped in and rolled off into dead ends or got lost around corners.

He dug a gem from the treasure box of his life (Photo courtesy of Sam at Photos8.com, whose work is brilliant)

Still, he laughed and nodded and sighed. I could see he was enjoying himself but was disappointed he couldn’t participate. At the end of the workshop, I learned how wrong my definition of participation had been.

He looked at me with a mischievous grin. “I love listening to stories, but I didn’t think I could ever be a storyteller. Now I know I can.” Others had stopped to talk so he ignored my startled expression and rolled away.

A story swap ended the day. That’s where anyone with a short story to tell can sign up for the chance to share a tale with the kind of receptive audience that flocks to storytelling festivals.

Our man in the wheelchair motored to the front. When all eyes were on him, he said, “Until today I believed I could never be a storyteller. My short-term memory is gone. I thought I had to learn stories in order to tell them. Now I know I can dig in the treasure box of my memories.”

That man dug a gem out of the treasure box of his memories. His short story had us holding our sides with laughter. The storytellers in the audience were wide-eyed with admiration. Here was a natural spinner of tales, a weaver of words, a teller who held us spellbound.

He also had an audience. I don’t know if he found other audiences after that day. I hope so. He was a gifted storyteller.

I thought of him yesterday when I ran across the report of a study carried about by University of Missouri Researchers. Patients with mild to moderate dementia increased their social interaction and were happier, an effect that lasted for weeks after the storytelling sessions. They were using the TimeSlips Creative Storytelling program, designed to tap into the imagination of Alzheimer’s patients. TimeSlips discovered that people with mid to late stages of memory loss may no longer be able to string together a story with beginning, middle and end. But they still have a treasure box of memories, full of shining stones.

We all have a treasure box. One of the greatest gifts we can give each other is to share our shining stones.

Friends of the Earth have created a very powerful short plea for the “men in suits” to act on what they already know to avert disaster due to climate change. Using a child as narrator and some clever visual storytelling, the video is a graphic summary of the problem and the need for urgency.

I found this through a new Twitter friend, Nick Kellet. He’s CMO and Product Strategist for HuStream, a company that “mixes human psychology video wizardry and web-based technology to redefine viewer engagement.” Browsing around their site gave me all kinds of ideas for using storytelling for promoting, informing and inspiring.

One very exciting example is a “video conversation” that features children from a school that raised $16,000 for a project called “Free the Children“. A second example is a promo video for Isagenix’s Beyond Courage personal development retreat.

There are lots more good examples on the Friends of the Earth YouTube Channel and on HuStream. Have to say I’m proud to know the latter is a company right here in my own home town of Kelowna, British Columbia.

Having moved so many times in my adult life, I’ve rarely had the chance to really connect with “my” doctors. Some make it easier than others. They are the ones who know how to listen, who want to know the context of whatever symptoms walk through the door. They want to know my story.

A doctor who stands out in my mind took a storytelling course from me through the University of Washington’s Experimental College. During introductions, he told us why he was talking the class.

Virtual Environmental Doctor

Virtual Environmental Doctor, from Wonderlane's Flickr photostream, seems an apt visual metaphor

He led Grand Rounds at the University of Washington Medical Center. He knew talking about symptoms and treatments was not enough. He wanted students to understand no one’s health deteriorates in isolation. His goal was to tell patients’ stories in a way that would teach diagnosis as an art, not just a skill. Judging from the stories he told during the course and his intense listening when others spoke, I’d say his students had a good chance of becoming better doctors thanks to his influence.

So I was keenly interested to find the story Dr. Jack Coulehan tells on the Alaskan LitSite. He writes about his internal medicine practice in a rundown neighbourhood in Pittsburgh in the 1970s. He was a young doctor, with a scraggly beard that amused his patients. “But the thing they found most strange about me was that I spent so much time listening to their stories.”

He goes on to describe his experience as a junior faculty member at the nearby university hospital. He writes, “When students tried to tell their patients’ stories during rounds, the resident would caution them to stick to the point.”

That attitude turned the people he knew into objects. They were transformed, like the self-educated, paraplegic teetotaler who was an expert on Pittsburgh history. The medical team labeled him an “alcoholic” because of his red nose and colorful vocabulary and sedated him into a “zombie who couldn’t think straight”.

Coulehan says that medical students receive mixed messages. They take classes that focus on narrative as the heart of medical practice, then enter hospitals where they are taught that stories “may actually obscure the problem” and where the technical fix and objective data overrule patients’ narratives.

In British Columbia a new program is trying to address this, by training volunteers to influence a health system that too often talks “about” rather than “with” them. Patient Voices Network has launched with a large and hopeful intention: “We expect that as experts in their own lives, patients can provide health system administrators and care providers with important information about [how] to best serve them and involve them in their own care as partners.”

One of the things volunteers have asked for is training in storytelling. They understand intuitively that change happens when we hear, understand, and honour each others’ stories. Perhaps through their influence there will be many more doctors like Dr. Coulehan and the doctor who came through my class many years ago.

[Have you had a doctor who really heard your stories? Taught physicians to tell stories? Share your experiences in the "comments" section below.]

Regular readers of Story Route and those of you who are Facebook friends will likely recognize A Storied Career. It’s Kathy Hansen’s “Blog to explore traditional and postmodern forms/uses of storytelling”. Even in the middle of a cross-country move, Kathy continues to post provocative and fascinating entries on a dizzyingly wide array of storytelling topics.

So when she asked if I would participate in her Q&A series, I was honored. She sent a list of questions to choose from, all of them well crafted and designed to set my mind racing.

I’ve excerpted a few excerpts below. The whole Q&A is available on A Storied Career. While you’re there download the e-book she created with her first forty online interviews: Storied Careers: 40+ Story Practitioners Talk about Applied Storytelling

Here are the excerpts:

Can you elaborate on how you applied your experience as a performance storyteller to your new career [as a community developer]?

The realization was not instantaneous. For the first while, I had the usual worries: Someone would find out I was actually a storyteller masquerading as a community developer. Then it would be game up.

What happened instead was that I began to insert stories into presentations and to use storytelling techniques to prepare reports. It wasn’t long before I was seen as a storytelling community developer. Or was it a community organizing storyteller?

How did you initially become involved with story/storytelling/narrative?

Storytelling became the underpinning of everything I did. When I look back on the unexpected twists and turns of my professional life, I feel extraordinarily lucky. Storytelling allowed me to be happily employed, doing what I loved. Initially, I thought that meant performing and workshops. When that morphed into the world of community development, I realized I’d found my niche and have been happy in that ever since.

To what extent and in what ways do you feel these venues [Web 2.0 and social media] are storytelling media?

The various social media are a means of entering the world of story from different points. We can assume an avatar and jump into Second Life. We can try out a new story and test it on Twitter or Facebook. We can blog a different perspective and see who responds, and how. We can invent our professional persona on LinkedIn.

To me, it’s all part of the larger arena of storytelling. If we don’t fall into the trap of becoming an observer, if we actually engage and become creative contributors, we can experiment with creating new stories.

What’s your favorite story about a transformation that came about through a story or storytelling act?

Although I know many instances of transformation through a story or storytelling act, I keep coming back to two I had the honour of witnessing. Both were published in The Healing Heart~Communities and are on my Catching Courage blog.

As a transplant from the US, what similarities and differences do you observe in the storytelling environment between the two neighbor nations?

John Ralston Saul may have the answer in his extraordinary book, A Fair Country. He points out that one of the major differences between the US and Canada is the latter’s Métis roots (which he also says we ignore at our peril). Saul writes that the first European arrivals had an egalitarian relationship with the First Nations people who were already here, a relationship destroyed by latter settlers, who brought cultural genocide.

Read the whole interview on A Storied Career.

Electronic medical records (EMR) are a boon to doctors. They gather all information about patients in one convenient place, easily accessed when someone presents a new set of symptoms or some variation of the old. As the patient’s story unfolds, her doctor can scroll through the appropriate records, underpinning the narrative with knowledge of previous illnesses or injuries or stresses.

Doctor and patient

Doctor and patient in City Hospital Tuberculosis Division, 1927. Item 2721, Engineering Department Photographic Negatives (Record Series 2613-07), Seattle Municipal Archives.

The problem in the U.S. is that those records have to be coded for insurers, reducing everything to medications, tests, diagnoses. The narrative becomes fractured, the interwoven story of the patient lost.

Writing in the April 22, 2010 issue of The New York Times, Dr. Pauline Chen quotes Dr. C. T. Lin, a practicing internist and chief medical information officer for the University of Colorado Hospital in Denver: “Physicians think in stories. How can you possibly point and click your way through a patient’s 10-year history?”

Speech recognition software may ease the problem, allowing physicians to dictate patient histories in a way that returns narratives to their records.

Reading the article, I reflect on the seven-minute billing blocks that have become standard practice in British Columbia health care. I value the universal system that has allowed me a long freelance career unshadowed by the threat of loss of medical insurance. But I wonder if the pressure on patients to spill their stories quickly and on doctors to diagnose in pieces doesn’t add to patients’ stress and decrease the chance of accurate diagnosis.

Wellness, as opposed to our western focus on sickness, is a matter of balance and wholeness. Our stories are essential to that. The labyrinth of American insurance requirements and the forced brevity of our B.C. patient-care system both disrupt our narratives. And if our doctors cannot really hear our stories, they can only treat our symptoms, not assist us to recover balance and wholeness.

“There is no conclusion in science; it is a continual and recursive process of story testing.” ~ Paul Grobstein

Eggs Benedict. Boiled eggs. Fried, scrambled, poached, coddled eggs. Huevos rancheros, omelettes, eggnog. Just listing them makes me drool. Yellow and white killers in a crusty shell? Or nature’s little health miracle? It’s all in the science, and science is all in the story.

For many years, I worked with organizations and systems that worshiped at the feet of science. This was generally defined as peer-reviewed studies published in peer-reviewed journals. The “gold standard” was the randomized clinical trial.

The minor gods in service of the ideal were quantitative methods that produced numbers that could be compared, graphed, and used to substantiate or reject the need for some project, methodology or program.

Qualitative methods were suspect, dealing, as they did, with the messiness of human nature. Results were often dismissed as interesting but no more valid than an informed guess.

Of course, both quantitative and qualitative methods produce useful stories that summarize current knowledge. What neither produces is Truth, that shy and elusive deity who is sought but never found.

Basket of eggs

The humble and much-maligned egg from woodleywonderworks ' photostream on Flickr

Take, for example, the simple and much-maligned egg. After years during which eggs were dangerous to our health, scientists have exonerated the humble barnyard gifts.

During the egg-as-demon years, I had numerous disagreements with colleagues and friends who insisted research was objective. They viewed my refusal to give up eggs as an attack on the scientific method and an absurdly unhealthy choice.

What was really at work in my stubborn brain was the sense that research is based on stories, and stories change. I just waited them out and quietly went on eating eggs.

So I chuckled when I ran across an essay by Paul Grobstein, a neurobiologist, biologist, philosopher, and educator at Bryn Mawr. In “Science as story telling and story revising”, he writes, “the scientific method cannot validate universal claims; so scientific stories should never be regarded as candidates (or competitors) for ‘Truth’. And they are true only insofar as one is satisfied with the provisional, i.e., with a story that summarizes all observations made up to the present.”

I wish I had had a copy of Grobstein’s essay to hand out during my years in community development. Whatever methods we used, qualitative or quantitative, to evaluate the projects and programs in which I was involved, the best we could offer was a story.

The story was based on what we hoped would happen at the outset, mixed with what we observed along the way, and blended with what we learned as we reflected on the whole process. Into that mix we threw the stories of other researchers, evaluators, and participants who had contributed their observations, learnings, and reflections.

To be honest, I have to say that the people with whom I shared those stories over the years were very receptive. But it might have eased the worries of others, particularly those who were allies in the search for ongoing funding, if I could have shared Grobstein’s observation with them: “As summaries of observations, scientific stories are only as good as the breadth of observations they summarize, so the more people contributing observations the better. In addition to the observations, however, one needs the stories to summarize them, stories that in turn influence what new observations are made and what significance is attached to them….The more people, the more observations, the more stories the better.”

In the search for the Holy Grail of Truth, science’s latest stories are important. They are also incomplete, based, as they are, on current observations filtered through the lens of experience and belief the scientists brought to bear on their experimental methodology.

Maybe we should think of research findings and qualitative evaluations as interim truths. It would help us remember a quotation attributed to Albert Einstein:

Whoever undertakes to set himself up as a judge of Truth and Knowledge is shipwrecked by the laughter of the gods.

Grobstein, P. (2005). Revisiting science in culture: Science as story telling and story revising. Journal of Research Practice, 1(1), Article M1. Retrieved April 13, 2010, from http://jrp.icaap.org/index.php/jrp/article/view/9/18

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