Tag: narrative medicine

Get Your Words Out

Having completed reading and grading close to 150 nursing student personal narrative policy papers (based on the Narrative Matters series in the health policy journal Health Affairs) for a public/population health course, I am energized by what they wrote—and by how well they wrote about compelling and timely public health issues they have a personal connection with. The ongoing and worsening opioid epidemic and diseases of despair, immigrant and migrant health, eating disorders and other mental health issues made worse by the COVID-19 pandemic, racism, environmental justice/climate change, elder health, vaccine hesitancy, and the occupational and safety fallout from the effects of how poorly our country and healthcare system have dealt with the pandemic.

As I read many of these student personal narrative policy papers, I thought of the wise words I heard recently from the author and environmental activist Terry Tempest Williams. She said, “Anger is polemic and no one wants to hear it. Rage is a story. There’s something behind rage. Anger is a shout; rage is a simmer. A piece written out of sacred rage lasts, while an op-ed is usually anger and people wrap fish in the paper the next day.” The most effective and powerful student papers tapped into that river of controlled, simmering rage. The nursing students who wrote these papers give me great hope for not only the future of nursing but also for our collective future.

I’ve promised to help them carry their words into publication of some sort should they choose to do so. Their lived experiences, their words, their perspectives are important. Of course, some students may not have the time or energy to revise their papers and submit them for publications. Others may have personal stories and perspectives that they are willing to only share with me. That is fine and I honor their decisions. Others have written to tell me that my feedback and encouragement to publish have motivated them to pursue that. Several have told me that they are so ‘on fire’ with the content and messages of their papers that they want to work on revision and publication over the holiday school break.

So here is my advice for them and for any of you readers, nurses or otherwise, who have compelling stories to tell to a wider audience.

  1. Ask yourself if you are ready to share your personal stories to strangers—and if you are ready to receive feedback, good or bad (or indifferent) on your story, not just by reviewers/editors, but also by readers once your story is published.
  2. Ask yourself if this is your story to tell and review the ethical guidelines provided by different publishing venues. As a general rule, altering patient or institutional identities is required.
  3. Read content and become familiar with a wide variety of publishing venues to see what sorts of things they publish before deciding to submit a piece of writing to them.
  4. Sometimes it is easier to start small, with submitting a shorter piece of writing to a publishing venue you like, are familiar with, and that has a track record of providing a kind and timely response and review/decision. One of my personal favorites is Pulse: Voices from the Heart of Medicine out of Montefiore Medical Center, Albert Einstein College of Medicine. For students, submitting work to a student-led narrative medicine/health humanities journal can be a good idea. At the University of Washington we have Capillaries: The Journal of Narrative Medicine.

Empathy: Walk in My Shoes

IMG_4999Shoes are powerful markers of a person; shoes tend to hold the presence of the person who has worn them. In The Year of Magical Thinking, Joan Didion addresses this phenomenon. After the death of her husband from a massive heart attack, she finds herself holding on to his shoes. She writes, “I could not give away the rest of his shoes. I stood there for a moment, then realized why: he would need his shoes if he was to return. The recognition of the thought by no means eradicated the thought.”*

(…) It was the red sneakers Essie was wearing that drew me to her at the women’s shelter earlier that day. This was the second time in the past several months I had run into Essie at one of our foot care clinics. She wore an orange polyester shirt with a green chiffon scarf tied around her dreadlocks, a pink pleated skirt down to her ankles, and the red sneakers. She told me she only dressed in bright, Caribbean colors: “They keep me happy. I can’t be all down in the dumps when I got these colors on.” Essie had a perpetual and slightly crooked smile, the crookedness perhaps the residue of a stroke.

The women’s shelter is located in a church basement in downtown Seattle near the main shopping district. It is a day shelter, a safe zone for women and children, that serves homeless and marginalized “near homeless” women, especially women dealing with domestic violence. The shelter has multiple case managers, social workers, and volunteer nurses who try to connect women with health, housing, and social services. The shelter workers lend the women a hand, bend an ear to hear their problems, offer a leg up the socioeconomic ladder, a toehold on life. Empathy is their main tool. Empathy is what we try to cultivate in our health science students.

Empathy is “feeling with” as opposed to “feeling for,” which happens at arm’s length sympathy. “Walking in another person’s shoes” is how empathy is most commonly described. But can we ever walk in another person’s shoes? And is it always a good thing to try?

* quote is from Joan Didion, The Year of Magical Thinking (New York: Vintage International, 2006), p. 37.

Note: The above excerpts are from my essay, “Walk in My Shoes” in my book Soul Stories: Voices from the Margins (San Fransisco: University of California Medical Humanities Press), pages 11-12.

Stolen Stories

P1020721Telling the story of trauma—of survival—may have the capacity to at least aid in healing at the individual level, but then there is the added danger, once the story is shared, of it being appropriated and misused by more powerful political or fundraising causes. Stories can be stolen. Arthur Frank calls these “hijacked narratives—”Telling one’s own story is good, but it is never inherently good, and the story is never entirely one’s own.” (1)

An intriguing example of a stolen story is the one explored in Rebecca Skloot’s narrative nonfiction book The Immortal Life of Henrietta Lacks, a book that tells the story of the cervical cancer cells “stolen” from an impoverished and poorly educated black woman in Baltimore in the 1950s. Scientists at Johns Hopkins Hospital subsequently profited from culturing and selling these HeLa cells—cells which killed Henrietta Lacks, cells which neither she nor her family members consented to anyone using or profiting from. Skloot, a highly educated white woman, has also now profited from the use of the Lacks’ family story, although she has set up a scholarship fund for the Lacks family members.

I am reminded of the proverb that Vanessa Northington Gamble shares in her moving essay, “Subcutaneous Scars,” written about her experience of racism as a black physician. Dr. Gamble’s grandmother, a poor black woman in Philadelphia, used to admonish her, “The three most important things you own in this world are your name, your word, and your story. Be careful who you tell your story to.” (2)

**The above is an excerpt from my chapter/essay “The Body Remembers” from my book Soul Stories: Voices from the Margins (San Francisco: The University of California Medical Humanities Press, 2018) page 81.

  1. Arthur W. Frank “Tricksters and Truth Tellers: Narrating Illness in the Age of Authenticity and Appropriation,” Literature and Medicine 28 no. 2 (Fall 2009): 185-99, page 196.
  2. Vanessa Northington Gamble, “Subcutaneous Scars,” Health Affairs 19, no.1 (February 2000): 164-69, page 169.

Why Write?

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From the 2017 Northwest Network for Narrative Medicine Conference, Portland, Oregon

Recently, in a writing workshop on social justice issues, I was given a copy of Terry Tempest Williams’ essay “Why I Write” and in response to the reading of that brief essay, was given the writing prompt, Why do you write?

A simple enough (and in some ways too simple, as in a middle school level) writing assignment, but one that I happily took on. Beside my desk at home hangs an excerpt of George Orwell’s 1946 essay, “Why I Write.” In this essay he includes a list of “four great motives for writing” and they include (here in abbreviated form):

  1. “Sheer egoism. Desire to seem clever, to be talked about, to be remembered after death, to get your own back on grownups who snubbed you in childhood, etc., etc.. It is humbug to pretend that this is not a motive, and a strong one.
  2. Esthetic enthusiasm. Perception of beauty in the external world, or, on the other hand, in words and their right arrangement. (…) Desire to share an experience which one feels is valuable and ought not to be missed.
  3. Historical impulse. Desire to see things as they are, to find out true facts and store them up for the use of posterity.
  4. Political purpose—using the word ‘political’ in the widest possible sense. Desire to push the world in a certain direction, to alter other people’s idea of the kind of society that they should strive for.” pp. 312-313 in, A Collection of Essays by George Orwell, London: Harcourt, Inc. 1946.

So here is my prose poem, “Why I Write”:

  1. I write because my fingers are ink-stained. I write because if I don’t, my pen will explode.
  2. I write to make sense of the world. I write to court chaos.
  3. I write until the rivers of my mind run clear. I write until glyphs are superfluous babble-brook praise.
  4. I write unless there are enough reasons not to. I write unless it is unsharable, and then it stays inside, inscribed, worm-tracing scars.
  5. I write journals, research proposals, reports, patient chart notes. I write poems, blog posts, essays, chapters, books, and marginalia.
  6. I write personal mission statements. I write to humanize health care for patients, providers, and communities.
  7. I write my name. I write my different names beneath the kitchen cabinet of my childhood.
  8. I write because I was here. I write because I am here.
  9. I write to remember. I write to forget.
  10. I write. I am a writer.

I opened this post with a reference to the social and environmental justice writing of Terry Tempest Williams. I close with one of my favorite passages of her writing that I stumbled upon this summer. It is from her book An Unspoken Hunger: Stories from the Field (Vintage, 1995). It reminds me of why I write; it reminds me of the importance of women writers in our world:

“As women connected to the earth, we are nurturing and we are fierce, we are wicked and we are sublime. The full range is ours. We hold the moon in our bellies and fire in our hearts. We bleed. We give milk. We are mothers of first words. These words grow. They are our children. They are our stories and our poems.” p. 59

 

 

Poetry Heals

IMG_4301 “come celebrate/with me that everyday/something has tried to kill me/and has failed.” Lucille Clifton, “won’t you celebrate with me” from Book of Light (Copper Canyon Press, 1993).

Poetry heals. Is it any surprise that at times of crisis, illness, grief—or joy and celebration—we turn to poetry to help express what straight word prose cannot?

I have been reminded of this over the past week while simultaneously holding the joy of a family milestone birthday with the sudden serious illness of a dear friend. I have been thrown into the arms of poetry.

Poetry heals. Our first responders are poets, as are artists of all kinds. Cherish our poets and artists. Their work is essential for our existence, for our survival. Listen up you curmudgeonly naysayers who proclaim that poet laureates of our cities, states, and nations are a waste of taxpayer dollars—that the money would be better spent on sweeping away our human waste, on filling the potholes in our roads. You too—but perhaps too late—will be thrown into the arms of poetry.

“There are times when people have experiences that don’t fit neatly into a storyline, a narrative of what happened. Especially within the context of trauma, suffering, and oppression, our ability to arrange bits together into a coherent narrative is overwhelmed. Yet these experiences, beyond the reach of narrative, can be formulated, conveyed, and communicated through metaphor, poetry, art, photography, and gesture.” (From my essay, “Witness: On Telling” in Intima: A Journal of Narrative Medicine, Fall 2017.)

I end this, as I began, with the words of Lucille Clifton. Here is a powerful video recording of her talking about and then reading her poem, “The Killing of the Trees.” In her opening statement, she says, “There seems to be very little reverence for life. I think there is a thing which bothers me about people not having reverence for life that doesn’t look like themselves. And I think that is a great mistake.” As a gifted poet, Clifton can “see it all with that one good eye.”

Field Notes on Witnessing

IMG_9363On this sunny Sunday in Seattle, I awake and find my essay, “Witness: On Telling” published in the Field Notes section of Intima: A Journal of Narrative Medicine. This is one of my most digging deep and making it real sorts of essays I have ever written. It is the second part of a two part bookended longer essay on the complicated role of witnessing to the traumas of others and of ourselves. The second essay is titled “Witness: On Seeing” and both are part of my forthcoming book collection of essays and poems, Soul Stories: Voices from the Margins.

In this essay I explore how and why and in what forms we tell (and listen to) stories of trauma and what Arthur Frank terms “deep illness.” I parse out the typology of illness stories as presented in his landmark book, The Wounded Storyteller. I challenge health care providers to increase our capacity to listen to—and to hear—different types of illness stories, including the more distressing (and closest to the reality of trauma) chaos stories.

And I look forward to being part of the upcoming (October 20-22) Northwest Narrative Medicine Conference in Portland, Oregon. I’ll be giving a Saturday keynote address titled “Endurance: The Limits of Resilience” and a Sunday writing workshop titled “Radical Self-Care for Social Justice and Health Equity.”

Soul Stories: The Book and I

IMG_2241One midwinter’s day in Seattle in 2009, I sat at my desk at home writing a federal grant proposal for investigating ways to improve health care for homeless young people. I stopped typing midsentence and gazed out the window at the rain and wind rippling the bamboo leaves in my garden. I asked myself what I was doing with my life.

I was a tenured professor teaching community health and health policy to nursing students at a large university. I was a nurse practitioner working with homeless teens and young adults in a community clinic. I loved teaching and I loved my work as a nurse, but this type of writing was not what I longed to do. I needed to find a way to merge my work in health care with my love of writing—of real writing, not the stiff, academic, formulaic writing required by my academic job, and certainly not the cold, distant medical writing in my patient clinical chart notes. Real writing to me was expressive, creative writing—reflective writing that allowed the “I” back into the frame, as, of course, I am doing now. So, as if it were a crystal ball, I typed into my computer’s search engine the words “healthcare” and “literature.” Among the results were links to narrative medicine and to the Narrative Medicine program at Columbia University in New York City. Developed over the past several decades by physician and literary scholar Rita Charon and her colleagues, narrative medicine (as defined by Charon) “fortifies clinical practice with the narrative competence to recognize, absorb, metabolize, interpret, and be moved by the stories of illness.” (…)

And as for real writing within my own life? In retrospect, it was fortuitous that I submitted my last federal health care grant back in 2009, at a time of extreme funding cutbacks during our country’s Great Recession. The reviewers’ feedback was that it was a worthwhile proposal and that it would have received funding if it had come in a year or so earlier, when they had more money. Around that same time, I sat in a faculty meeting where a successful older researcher showed a PowerPoint slide with a series of rolling hills leading off into the distance and a road with National Institutes of Health (NIH) grant signs, one after the other, leading over the hills and fading into the sunset. Her point was that this was how our lives as university researchers should look: this slide represented our marching orders. I stared at the slide and then whispered to a colleague, “and then you die.”

I have nothing against NIH or the researchers who stake their careers on NIH or similar grants, but I knew that slide did not represent the life I wanted. I was forty-nine years old at that point, and my mother had died the year before; the sunset in the slide seemed very real. My husband had also recently commented that if I had used the same amount of time, effort, ink, and paper that went into my grant-writing, I would have written a book manuscript—or several—by then.

Instead of revising and resubmitting my rejected NIH grant proposal, I began to write what became my first published book, a medical memoir titled Catching Homelessness: A Nurse’s Story of Falling Through the Safety Net. This was a book about my work with and spiral into homelessness as a young adult. Through the writing of Catching Homelessness, I did what I consider real writing. The act of researching and writing the book, a book which wove in pertinent events from my personal as well as professional lives, helped give some narrative cohesion to my own fractured and oftentimes confusing existence.

While writing a later chapter of that book, “Greyhound Therapy,” which deals with gender-based violence, I brushed up against a then mostly closed door to my own childhood traumas. I made the decision to keep that door closed: to open it within Catching Homelessness would have led away from the main purpose of the book, which was to illustrate the complexities involved with homelessness and its attendant ills. I knew that to open the new door would require a much different book, one that contextualized the effects of trauma on individuals and communities, and the ways that narrative and storytelling factor into health and healing.

That much different book became Soul Stories: Voices from the Margins. The opening of that door and the personal exploration of what was behind that door led to this book. In writing it, I allowed myself to stray from the clear objective facts of science and medicine into the murkier subjective part of what it means to be human, and what it means to find healing in the face of trauma. This book is the result of that labyrinthine journey.

Note: The above is an excerpt from the Preface of my book manuscript Soul Stories: Voices from the Margins, currently accepted for publication by an academic press, details to follow.

Northwest Narrative Medicine

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Narrative medicine, Pacific Northwest style, strikes me as something worthwhile. Frontier, boundary pushing narrative medicine. Pencils (and pens, and laptops) with golden wings! We now have (thanks to the folks in Portland, Oregon) a Northwest Narrative Medicine Collaborative.  Next month (October 20-22nd) they will hold their second annual Narrative Medicine Conference in Portland, Oregon. I am honored to be a part of it and will be giving a keynote address titled “Endurance Test: The Limits of Resilience” in which I’ll examine the unintended consequences of the often saccharine sweet resilience research and will, instead, propose the concept of endurance in our work and lives. Endurance, as described by psychiatrist and anthropologist Arthur Kleinman, makes so much more sense to me than does resilience—especially in the times we are living through. Kleinman writes:

“What helps us endure? And I mean by endure withstand, live through, put up with, and suffer. I do not mean the currently fashionable and superficially optimistic idea of ‘resilience’ as denoting a return to robust health and happiness. Those who have struggled in the darkness of their own pain or loss, or that of patients or loved ones, know that these experiences, even when left behind, leave traces that may only be remembered viscerally but shape their lives beyond.”  (Arthur Kleinman, “The art of medicine: how we endure.” The Lancet. January 11, 2014. 383: 119-120.)

Listen, Carefully

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“Silence” by Johann Heinrich Fussli, 1799-1801

My essay, “Listen, Carefully,” was published today by Electric Literature/Okey-Panky. I love the Okey-Panky tagline, “Literary oddments for busy people.” They state that my essay (or is it really a prose poem?) is a 4-minute read. It includes a link to my 7-minute digital storytelling video of my reading of the piece, accompanied by my photographs.

“Listen, Carefully” is part of my book and digital humanities project, Soul Stories: Voices from the Margins. In “Listen, Carefully” I parse out some of my criticisms of the practice of narrative medicine, as well as the rhetoric of listening—and of silence.