Stealing Stories

IMG_2261
Kris W. “Wall of Distraction” Photograph on canvas. 2011—Youth in Focus/ On display at the UW School of Social Work, Seattle

The commodification and co-optation of stories—of individuals and communities—is something I have been thinking about lately at both a personal and professional level. Personal, as I reflect on the various critiques of my medical memoir, Catching Homelessness: A Nurse’s Story of Falling Through the Safety Net (Berkeley: She Writes Press, 2016). And professional, as I walk through the medical center where I work and notice the larger-than-life patient testimonials (read: advertisements) for the medical care they have received—and read the various gut-wrenching personal stories of people who will be adversely affected by the current Republican-led efforts to “reform” our healthcare system.

In addition, I am thinking about this issue as I finish final writing and editing of my next book manuscript, Soul Stories: Voices from the Margins. The following is an excerpt from the chapter/essay “The Body Remembers”:

“Telling the story of trauma—of survival—may have the capacity for at least aiding in healing at the individual level, but then there is the added danger, once 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.”

An intriguing example of a stolen story is the one included in Rebecca Skloot’s narrative nonfiction book The Immortal Life of Henrietta Lacks, which tells the story of the “stolen” cervical cancer cells from an impoverished and poorly educated black woman in Baltimore in the 1950s—cells that scientists at Johns Hopkins University Hospital subsequently profited from through the culturing and selling of HeLa cells—cells which killed Henrietta Lacks and cells which neither she nor her family members consented to being used and profited from. Skloot, a highly educated white woman, has 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,” 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 that you own in this world are your name, your word, and your story. Be careful who you tell your story to.”  (From “Subcutaneous Scars” Narrative Matters, Health Affairs, 2000, 19(1):164-169.)

  • See also my previous blog post “The Commodification and Co-optation of Patient Narratives” from February 11, 2011. Re-reading this blog post, I remembered that it was deemed too controversial and critical by a university librarian to include on our narrative medicine university-sponsored blog site (now inactive—the library blog, not the librarian).

Summer Reading Challenge: Global to Local

FullSizeRender 2For my third annual summer reading challenge list of books with a social justice slant, I’ve decided to focus on global to local from my Pacific Northwest (Seattle) corner of the country. These are all excellent books to read no matter where you happen to live. Here they are from the top of the pile working down:

 

My Ode to Hospital Chaplains

IMG_7733

Here is my “Perspective” on hospital chaplains and health humanities, published in the most recent issue of the Journal of Medical Humanities. The photo above is of a sketch I made of the “park bench individual” included in my poem “Waiting” included in the brief article.

Perspective

Josephine Ensign (1,2,3)

Now, thirty-two years after graduating from the Medical College of Virginia/Virginia Commonwealth University School of Nursing (BS ‘84) in my hometown of Richmond, I can safely say that the single most important course I took in nursing school was not in nursing. Rather, it was a health humanities and medical ethics course taught in the School of Medicine by a hospital chaplain, Reverend Bob Young. Reverend Bob focused this course on death and dying, and he used a small weekly seminar format with a literary reading and writing group. There were approximately ten students, all first- or second-year medical students, except for me. I was in my first year of undergraduate nursing school and was struggling to avoid both failing and dropping out. I despised nursing school with its antiquated emphasis on rote memorization and rigid hierarchical hospital practice. I vowed never ever to teach or to go near a nursing school again once I graduated.

Now (again), after twenty-one years teaching undergraduate nursing courses at the University of Washington in Seattle, I can safely say that Reverend Bob’s health humanities course is the single-most influential course on my own teaching and healthcare practice. For Reverend Bob’s health humanities course, we completed a final portfolio of poems and prose we had written over the semester as reflection on the course content and on our own personal and professional lives. At twenty-one years of age I wrote some overwrought poems, including one about a baby bird dying in my hands after it had been mauled by my dog. But I also wrote several poems that, if not good by MFA standards, are poems that have stayed with me and helped guide my hands, head, and heart over the many years since I wrote them. Like this one titled “Waiting”:

 

Sitting on park benches

Wringing their hands
Trying to forget the ill one inside

That hospital there.

The building you just stepped out of
The one you walk by every day
That structure has become a part of the skyline

Seen from the window of a dorm room.

It is a lab, a place to practice

The proper way to give drugs

To make beds
To become a nurse.

But reflected in the eyes of the park bench individuals

The building becomes
One room
One bed

One person

One fear

One hope.

Reverend Young gave me an A-plus for the course. But the grade doesn’t matter as much as the lasting solace his course has given me over the many years of my work as a nurse—and as a nurse educator. Thanks to all of the important hospital chaplains out there—no matter what their faith or spiritual persuasion. And thanks to everyone who works hard to put the human back in health care and in health professions education.

Josephine Ensign, FNP, MPH, DrPH
Associate Professor, University of Washington School of Nursing in Seattle
Affiliate Faculty, University of Washington Simpson Center for the Humanities,
Certificate Program in Public Scholarship
Medical College of Virginia/Virginia Commonwealth University School of Nursing (BS ’84)

1, 2

Josephine Ensign bjensign@uw.edu

School of Nursing, University of Washington, Seattle, Seattle, WA, USA

Certificate Program in Public Scholarship, University of Washington Simpson Center for the Humanities, Seattle, WA, USA

3
Richmond, VA, USA

School of Nursing (BS ‘84), Medical College of Virginia/Virginia Commonwealth University,

 

Open Access .This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.

Here is the link to the journal article: Ensign_j med hum

Radical Nursing

IMG_1286 2
Seattle Women’s March. Photo credit: Josephine Ensign/2017.

(Note: parts of this Yale School of Nursing 2017 commencement speech were adapted from the chapter “Soul Story” included in my forthcoming book Soul Stories: Voices from the Margins.)

Good afternoon. Thank you Dean Kurth, and all the faculty, staff, students, and the friends and family members of today’s graduates, for this opportunity to speak to you about a topic I am passionate about: nursing. But not traditional nursing—not the Lady with the Lamp during the Crimean War—and not the white uniform-clad nurse angel of Hallmark moments. About that nurse angel, to paraphrase Virginia Woolf and her similarly stifling angel of the house: whenever you feel the shadow of her wings or the radiance of her halo, take up the inkpot or whatever modern equivalent is nearby and fling it at her. Because nurses are flesh and blood people. Nurses are not supernatural beings. We, as nurses, are human beings. Today, I want to talk to you about the real life transforming and transformational nursing of which you are all a part. I want to talk to you about radical nursing. And about the radical self-care it takes to be a radical nurse.

Radical. Not necessarily in the political use of the word. Instead, I mean radical, in the OED definition “of or relating to a root or roots—fundamental to or inherent in the natural processes of life, vital.” It is derived from the Latin radicalis, which referred to “the moisture or humour once thought to be present in all living organisms as a necessary condition of their vitality.”

What feeds and waters your soul? What draws you to the work that you do?

The question of what draws us to the work that we do as nurses is an essential one. It is a radical one. It is a question which demands from us the act of digging deep through the layers of our being, down into the root system. It demands from us the time and space necessary to examine and then continue to re-examine our answers as we move through life. It demands the use of the arts and humanities in order to explore fully. The tools necessary to do this digging are not included in your nursing science toolkit. They are included in your arts in nursing and creative writing awards program led by Dr. Linda Honan. They are included through the meditation, yoga, and other self-care opportunities you have had here at the Yale School of Nursing. They are included in the creative pursuits you brought with you into nursing and that hopefully you have continued to nurture.

Because if we don’t attend to the work of that question—of what draws us to the work that we do— it often becomes an Achilles’ heel, tripping us up, making us lame. If we are not careful, the root of our passion for our work can become the biggest source of professional burnout.

I know this from personal experience. I have burned out—flamed out—rather spectacularly at least once in my career as a nurse. I now know my own particular set of warning signals for when I am beginning to get crispy, and I have worked out an action plan consisting of a short list of self-care that for me includes creative writing, and “real” books (not textbooks), and libraries, and more time in nature and with my family and friends.

I’ll tell you a condensed version of my cautionary tale about my first and worst experience with burnout. I wasn’t able to really think about this episode of my life until more recently as I began to write about it—creatively and reflectively.

A few years ago, I was in New York for a week to attend the narrative medicine workshop at Columbia University. I was there to learn ways to incorporate the stories of health, healing, and the human condition into my work. After the workshop was over, I spent a Sunday walking the length of Manhattan in flip-flops, which was a very silly thing to do since I ended up with a badly infected blister on the bottom of one foot.

But as I walked through Manhattan, I pondered questions that had been flashing through my head like an existential version of the NASDAQ sign in Times Square. Why am I attracted to the suffering of others? Why have I spent the past thirty years working as a nurse with homeless and marginalized people? Would I be happier—and able to afford a better pair of shoes—if I was drawn to work as a shoe buyer for Saks Fifth Avenue? The latter question occurred to me as I hobbled past the wrought-iron festooned display windows of Saks’ flagship store.

In one of our last narrative medicine workshop sessions we were asked to, “write about the last real thing that happened to you.” My last real thing had occurred the week before, during my work in Seattle. I teach health policy to nursing students at the University of Washington. Together with colleagues in the Schools of Medicine and Dentistry I help train and precept groups of medical, nursing, and dental students in the provision of basic foot and dental care for homeless people. The week before my New York trip, we had done one of these Teeth and Toes clinics at Seattle’s largest homeless shelter.

The shelter is in the downtown core of Seattle, at the bottom of the original Skid Road, which earned its name from the frontier town’s cedar logs, public inebriates, and Gold Rush prostitutes that all rolled downhill together into the mudflats and salt waters of Puget Sound. Entering the building, I was hit by the smell of a horse stable, something hay-sweet mixed with urine. The smell took me back to my work at the Cimmerian warehouse of the Richmond Street Center in Virginia, where I began my work with homeless people in the 1980s, and where I rolled down my own version of Skid Road and was homeless for six months.

Later that evening, as I inspected various scars or open wounds on the homeless clients’ feet, my mantra to them became, “What happened here?” Some people had simple replies, such as, “I was in a bad car accident a year ago.” Others were more complex. One patient was a woman dressed in a stained orange t-shirt, her short red hair flying away from florid, puffy cheeks. She stared at the ceiling while mumbling to herself, as if in prayer, her hands held in front of her neck, fluttering. I had the impression she was trying to catch hold of her exposed and scattered soul. Her only reply, while still looking at the ceiling and twitching her hands even faster, was, “I get nervous with too many questions.”

What happened here? is a question I asked myself about my own spiral into homelessness. At age twenty-five I was a respectable Southern preacher’s wife and a newly graduated nurse practitioner, running a health care for the homeless clinic in downtown Richmond. In a photograph of me from this time I’m kneeling on the floor of the clinic, my long straight hair falling in my face, and I’m washing the feet of a bearded Vietnam veteran homeless patient. I mostly worked alone in the clinic, tending to the health needs of thirty or more homeless patients each day for more than three years. I have no photo of myself towards the end of those years when I became a severely depressed divorcee without a job, living in my car and in abandoned sheds. There is no coherent story of this time, no map recording my journey, no facile answers to the question of what happened, only a mosaic of metaphors: rolling down Skid Road, falling into the rabbit hole, exposing my scattered soul, eating myself with rage—and flaming out. In retrospect, I see that my descent was partially caused by an extreme case of professional burn out, something nurses are especially prone to.

The term “professional burnout” comes from Graham Greene’s novel A Burnt-out Case, set in a Colonial British Congo leprosy clinic staffed by an atheist physician and Catholic nuns as nurses. The physician explains that a burnt-out case is a leprosy patient whose disease has burned itself out: the patient no longer has active leprosy but has the scars such that he or she is unable to re-enter normal life. In a conversation with the Father Superior of the village, the physician tells him of the issue of a leprophil: a person who is attracted to the suffering of lepers—who loves suffering and poverty and illness—a form of schadenfreude. He states that leprophil nurses “…would rather wash the feet with their hair like the woman in the gospel than clean them with something more antiseptic.” He likens leprophils to people who love and embrace poverty. The leprophil “makes for a bad nurse and ends by joining the patients.” The physician tells the priest that a patient can detect when someone loves their disease, their poverty, their suffering, instead of loving them as a person.

Why are people drawn to work with the lepers, outcasts, and homeless of the world? Is it, as the priest states in Greene’s novel, dangerous to ask what lies behind the desire to be of use, for we “might find some terrible things”?  This virtuous work or calling or vocation or zeal, whether religious or secular, can feed the Hungry Ghost ego. It can become one’s identity; it can become addictive and destructive. I know this because I became my work and through it I became homeless.

The lesson here is: please do not become your work. That goes for all of us, whether we are graduates or teachers or administrators. In order for all of us to work together to help make our world a better, healthier place for everyone—which itself is a radical idea—it requires radical nurses who practice radical self-care.

Nursing is the largest healthcare profession worldwide, yet continues to have the least direct influence on health policy. Within nursing we have people working in four categories: 1) direct service providers; 2) advocates who help make systems work better for people; 3) organizers who bring people together to change or create new systems; and my personal favorite, 4) rebels—people who speak truth to power and who agitate for radical change. The key is to recognize your own strengths, where you are most comfortable working at any given time in your career—but to also see the value in the range of roles played by different people. Because an effective social change movement and an effective, compassionate, and equitable healthcare system, require people—require nurses—working together in all of these roles.

The Yale School of Nursing may be small, but its graduates have an outsized positive impact on the healthcare system, here in the US as well as globally—and even in terms of planetary health. Graduates: you don’t have big nursing shoes to fill, you have your own shoes, your own important career paths to blaze.

Southern Shrines of (Racist) Memory

DSC00528
Statue of Jefferson Davis, Monument Avenue, Richmond, Virginia. Photo credit: Josephine Ensign/2009

MY HOMETOWN OF RICHMOND, Virginia is a city anchored to its past by bronze and marble Confederate shrines of memory, by an undying devotion to the cult of the Lost Cause. I was born and raised in the furrowed, relic-strewn Civil War battlefields on the city’s tattered eastern edge. A captive of its public schools, I was taught official Virginia history from textbooks approved by the First Families of Virginia. But I came to understand the shadowed history of my state by caring for its homeless outcasts.

These lessons began while I was in nursing school. The modern hospital of MCV curled around the former White House of the Confederacy like a lover. My clinical rotations were nearby in the crumbling brick former colored-only hospital, which then housed indigent and homeless patients as well as prisoners. Most of these patients were black, so I called it the almost-colored-only hospital. The prisoners, shackled to their beds and accompanied by brown-clad armed guards, were from the State Penitentiary located across town. One of my patients was a death-row inmate. When I spoon-fed him his medications, I was simultaneously afraid for my own safety and ashamed of being an accomplice to murder. I knew I was nursing him back to health only to return him so he could be killed by the state. I wanted to talk to him, ask about his family, about his life in and outside of prison, but the stone-faced armed guard loomed over me. I knew from experience not to discuss my ambivalent feelings with my nursing instructor. She considered these to be inappropriate topics. I wanted to finish nursing school as fast as I could, so I kept silent. (From the chapter “Relics” in Catching Homelessness: A Nurse’s Story of Falling Through the Safety Net, pp. 57-58).

 

DSC00315
White House of the Confederacy (right) and Medical College of Virginia (now VCU) Hospital. Photo credit: Josephine Ensign/2009

These words—my own words— have come back to me this week as I followed the news of contested sites of memory, of whitewashed Civil War memorials literally being fought over once again in places like New Orleans and Charlottesville, Virginia—and perhaps soon in my hometown of Richmond, Virginia. In Charlottesville, white nationalists waved lit torches and chanted “You will not replace us” in front of a statue of General Robert E. Lee in a city park. (source: Associated Press, Washington Post, “Torch-wielding group protests Confederate statue removal” May 14, 2017). New Orleans has begun the removal of four Confederate monuments in the city, starting with the Battle of Liberty Place monument commemorating the Crescent City While League’s violent fight against desegregation of the city’s police force—in 1876 during Reconstruction. (source: Christopher Mele, New York Times, “New Orleans Begins Removing Confederate Monument, Under Police Guard” April 24, 2017).

Richmond, as the former Capital of the Confederacy, likely has the largest collection of statues to Confederate “war heroes” of any city. I took my driver’s test on the then still cobblestoned streets of Monument Avenue, a five-mile long stretch of tree-lined divided grand boulevard punctuated by traffic circles around five towering statues of civil war heroes. A sixth and very controversial statue was added in 1996 at the far western end of the avenue—of native Richmonder Arthur Ashe (1943-1993). Besides being an international tennis star, Ashe was also a civil rights and HIV/AIDS activist, and a champion of urban health equity work. His memorial statue on Monument Avenue portrays him standing, holding books in one hand (he was also an excellent student and UCLA college graduate) and a tennis racket in the other hand. In the statue, he faces west, away from the Confederate statues. When Ashe was growing up in segregated Richmond, he was barred from playing tennis in the city’s whites only parks—and, ironically, he also would have been barred from even walking down Monument Avenue, a whites only residential area.

Since Monument Avenue in Richmond is a designated national park and indeed, is the only national park to consist of city street, it is unlikely that any of the Confederate statues will be removed anytime soon. But perhaps it is time to rename the street Memorial Avenue. This idea comes from University of Richmond professor of philosophy Gary Shapiro in his NYT opinion page essay “The Meaning of Our Confederate ‘Monuments'” (May 15th, 2017). Shapiro points out that records of city planners of the Confederate “war hero” statues on what would become Monument Avenue, “show that they meant to legitimize and dignify the white supremacist regime that had taken hold in Virginia.” He quotes philosopher of art Arthur Danto who states, “We erect monuments so that we shall always remember, and build memorials so that we shall never forget.”

Instructive and remarkably prescient here are words of Henry James, in his travelogue book The American Scene, in the chapter “Richmond” about his visit to Richmond in the late winter of 1905. A late snowstorm prevented him from traveling very far from the center of Richmond, but he describes his walk to the then newly developing Monument Avenue and the statue of Robert E. Lee (erected in 1890). James reflects on his visit to Richmond and writes:

“History, the history of everything, would be written ad usum Delphini—the Dauphin being in this case the budding Southern mind. This meant a general and a permanent quarantine; meant the eternal bowdlerization of books and journals; meant in fine all literature and all art on an expurgatory index. It meant, still further, an active and ardent propaganda; the reorganization of the school, the college, the university in the interest in the new criticism.” p. 374 Henry James, The American Scene (London: Chapman and Hall, Ltd).

My own then budding Southern mind, educated in the Virginia public schools of Battlefield Park (named for the Civil War Battle of Cold Harbor) Elementary School, Stonewall-Jackson Junior High School, Lee-Davis High School—and then VCU/MCV nursing school—was negatively affected by that still-lingering, ardent, white supremacist propaganda. Through my father I am related to Varina Davis, First Lady of the Confederacy. That legacy, and the work that I have done and continue to do to actively resist racism, is something I do not want to forget.

Just Say No to Nurse Angels

FullSizeRenderThe American Nurses Association has declared this National Nurses Week (May 6-12, 2017) theme as “Nursing: The Balance of Mind, Body, and Spirit” to accompany their designation of 2017 as “The Year of the Healthy Nurse.” To help nurses celebrate the week, a host of businesses are offering “freebies” to nurses, including 1,000 calorie cinnamon rolls. I have nothing against high-calorie baked goods, but to celebrate nurses I recommend books and inkpots. Books, as in real books by real nurses (my current favorites listed below). And inkpots? I explain that in the following excerpt from my upcoming commencement address to graduates of the Yale School of Nursing:

“Thank you for this opportunity to speak to you about a topic I am passionate about: nursing. But not traditional nursing—not the Lady with the Lamp during the Crimean War—and not the white uniform-clad nursing angel of Hallmark moments. About that nurse angel, to paraphrase Virginia Woolf and her similarly stifling angel of the house: whenever you feel the shadow of her wings or the radiance of her halo, take up the inkpot or whatever modern equivalent is nearby and fling it at her. Because nurses are flesh and blood people. Nurses are not supernatural beings. We, as nurses, are human beings. Today, I want to talk to you about the real life transforming and transformational nursing of which you are all a part. I want to talk to you about radical nursing. And about the radical self-care it takes to be a radical nurse.”

I have always bristled at the mention of nurses as angels and included this pet peeve of mine in a previous blog post from January 10, 2016: “Sick Nurses.” So I was delighted to run across a poem, “Killing the Nurse in the House,” by nurse and poet Cortney Davis. I had the pleasure of reviewing her forthcoming collection of poems, Taking Care of Time (Michigan State University Press), which won their Wheelbarrow Books Poetry Prize. This is the endorsement I wrote: “Searing and unsentimental, the poems of Cortney Davis serve as haunting and truth-telling companions. Whenever I am in need of inspiration or of reconnecting with compassion and with all it means to be human, I return to Davis’s ’stories tamed on the page.’ Although, as in her poem ‘The Snake Charmer,’ Davis knows her poems connect us with the wild, untamable places of our lives.” Taking Care of Time avoids the overly religious (to me) themes that have appeared in some of Davis’ recent writing. It will have a permanent place in my home library once it is published.

My current favorite “Real Books by Real Nurses” (and yes, I do include my own and yes, I do realize that this is not a very diverse group of authors and welcome suggestions of books I may not know about):

 

 

 

Going Public: Out of the Ivory Tower

IMG_4119Yesterday, I attended and was part of a timely all day workshop at the University of Washington Allen Library Research Commons, “Going Public: Sharing Research Beyond the Academy.” It was sponsored by the UW Libraries, College of the Environment, eScience Institute, and the Simpson Center for the Humanities/Public Scholarship program. Timely, of course, since science, climate change facts/efforts, the humanities (and arts), and even higher education in general are all under increasing attack in the United States.

The opening keynote speaker was Scott Montgomery, a geoscientist and lecturer in the UW Jackson School of International Studies and author of numerous books, including The Chicago Guide to Communicating Science (University of Chicago, 2003). For his talk, titled “A Story in 25 Images,” he practiced what he preaches by using PPT for showing a series of images to accompany a story (with a traditional narrative arc) of his journey as a communicator of science. Most of his images were abstract geology sorts of themes, but the ones that included human images portrayed only white men in suits. Yes, I was wearing my critical feminist academic bonnet, and yes, there were many women and persons of color in the audience. One young female attendee pointed out in the Q&A session that women within the academy face significant barriers, not just to entering science fields, but also to have non-traditional, public-facing and public-engaging scholarly work—barriers faced by men as well but to a lesser degree. And this is not only a gendered, but also a “minoritized” (her term and one that I like) issue.

The middle part of the day’s workshop consisted of panel discussions and break-out sessions focused on various issues of working with the media in all its varied forms—from TV and newspapers to podcasts, blogging, and other types of social media. I moderated a lunchtime round table discussion on academic freedom and public scholarship, two overlapping topics close to my heart. I didn’t share this in the session, but I have had to fight to defend my academic freedom in terms of this blog over its now seven year history. And public scholarship, such as what I do in my work on health and homelessness? It would seem that it is not deemed “nursing science,” whatever that term even means. But hopefully that is a cohort effect that will change for the better.

I was part of the final panel, “Navigating the Path from Research to Public Policy,” along with Dr. Simone Alin from UW Oceanography and NOAA; Washington State Senator Rueven Carlyle; Sally Clark, former Seattle City Councilmember and current Director, Regional and Community Relations, External Affairs at UW; and Tim Thomas, with the Urban@UW Homeless Initiative. The moderator’s question to the three of us panelists who are researchers was, “Can you tell us a little about how you’ve been involved in informing policy-making through your research.” Indeed, I can and I did, including a mention of my medical memoir, Catching Homelessness: A Nurse’s Story of Falling Through the Safety Net, which is research-informed and is written as a policy narrative—policy narrative being defined as ” a new genre of writing that explores health policy through the expression of personal experiences” by the editors of the Narrative Matters section of the health policy academic journal Health Affairs. Narrative Matters needs better inclusion from nurse writers, but that is another story for another day.