Tag: health humanities

Stories Beget Stories

Stories beget stories, so be careful of the ones you tell—or listen to or share.

This past week I was a participant in the StoryCenter‘s webinar “Defining Compassion in Nursing” based on the Nurstory digital storytelling project founded by Dr. Sue Hagedorn from the University of Colorado School of Nursing. I was intrigued by the title of the webinar as well as by the opportunity to learn how digital storytelling is being used in nursing education and advocacy.

Digital storytelling (DS) refers to short video segments (typically 3-5 minutes in length) personal narratives that incorporate digital images, music, and voice-over narration by the person making the video. They are typically created within a workshop-based process that includes a Story Circle to share, critique, and refine stories-in-progress. Developed in the early 1990s by media/theater artists Dana Atchley and Joe Lambert and promoted through their StoryCenter (formerly the Center for Digital Storytelling), DS has been used for public health research, training, and policy campaigns (such as the powerful Silence Speaks global women’s health/human rights campaign); community building (such as the now archived BBC Capture Wales program); literacy programs; and reflective practice with health science students. DS is increasingly used as an innovative community-based participatory method that is especially effective at informing program planners and policy makers about the lived experiences of marginalized people.

Besides the fact that not all stories can or should be told in a nice, neat, linear 3-5 minute format, there are numerous ethical issues to consider. A brief overview of some of the ethical issues with DS is included on the StoryCenter website under “Ethical Practice in Digital Storytelling.” And, with their permission, here is an excellent overview by Kelsen Caldwell (formerly in the University of Washington School of Medicine, Health Sciences Service Learning and Advocacy group) of ethical considerations of storytelling in health advocacy work with communities: “The Ethics of Storytelling.”

I have worked with groups of people experiencing homelessness, as well as with health science students working on community-based service-learning projects that include homeless people, and have helped them to make some of their own DS videos. I completed a participatory digital storytelling video workshop in August, 2015 with a group of homeless youth through the Zine Project Seattle (sadly, no longer in existence). With their permission I share links to two of their videos here: “Harm Reduction is Good” and “Tug of War.”

“Soul Stories: Homeless Journeys Told Through Feet” is a DS video I made to accompany a show of my photographs and poems/prose that then became the book, Soul Stories: Voices From the Margins (2018). Also from this book, I made “Listen, Carefully” (at 7 minutes a bit long for a DS). In a StoryCenter workshop at the University of Washington, Bothell campus during the summer of 2016, I made my “Homeless Professor” digital storytelling video which was based on a portion of my medical memoir, Catching Homelessness: A Nurse’s Story of Falling Through the Safety Net (2016). My very first DS video I made was “My Story of Community Health Nursing” that I continue to use in teaching population/community health nursing. In reviewing these DS videos, I am struck by their staying power and relevance for me. Although technically rough in places, they tell stories I want to share.

I have concerns about how empathy and compassion are defined by nursing and how we as nurse educators have our own unpacked, unexamined, uncritically looked at stories of what nursing should and should not be. Who gets to decide what is a “proper” nurse story of compassion? Shouldn’t it more properly be Nurstories instead of the singular Nurstory? That said, after viewing all of the DS videos on the Nurstory website, I am struck by how powerful and even subversive several of them are. Rawaih Faltatah’s “Circle of Care” is an ode to her older sister, a nurse, and the effects of her caring and compassion on her own life and choice of a career in nursing. A more difficult to watch and listen to, yet subversive and important DS video is “Invisible Touch” by Kate Clayton-Jones.

My Ode to Hospital Chaplains

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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

Medical Maze: Part III

IMG_2595Arrival

Late one November night in 2000, I drove myself to the ER at the UW Medical Center. I had left my twelve-year-old son sleeping at home. Still a single mother, I had called my boyfriend to come over and stay while I was gone. My legs had been tingling and getting progressively benumbed over the past week. The numbness started in my toes and now reached my butt and groin region, plus my toes were turning blue. I had no idea what was wrong. The weekend before I had run up the 2,400-foot Mount Constitution on an island in the Puget Sound. It had been cold on the mountain, but I hadn’t fallen or gotten frostbite. I was forty and in decent shape, was rarely ever sick, and had no primary care doctor. I worked as a nurse practitioner at a nearby community health clinic; I was used to diagnosing and treating other people’s health problems, but not my own.

“Take off all your clothes except your underwear and put them in this bag. And tie the gown in the back,” the ER nurse said, as she handed me a cotton gown and white plastic bag marked ‘University of Washington Medical Center: Patient Belongings’ in purple. Why did I wear black thong underwear to the ER? I thought, as I gazed down at my mottled blue toes.

My personal mantra at the time was, I can do this; I can do anything! I didn’t see the danger in that saying. I worked three jobs, trying to pay off school debts and save for a down payment on a house, as well as for my son’s future college education. I had been running on the tenure track, applying for and getting research grant after research grant, publishing a string of papers, collecting teaching and peer evaluations. The faculty had recently met to decide whether or not to grant me tenure. I didn’t yet know the outcome. If I did not get tenure, I would lose my main job. So there in the ER I did as I was told, stripped to my underwear, donned the gown smelling strongly of bleach, and then endured a series of tests and examinations. At some point, although I don’t remember when, a plastic hospital ID band was strapped to my left wrist over the spot where my silver bracelets had been.

Covered by a white sheet up to my chin, I was now lying flat on my back on a black plastic-encased gurney, perhaps one that has recently delivered a dead body downstairs to the morgue. Can I feel my legs? Are they still there or have they been amputated? Or is it just that they are frozen, because I’m so cold? What time is it and why are we going through all these hallways?

The air around me was cold—refrigerated morgue cold—and filled with the low murmuring of disembodied voices, accompanied by white noise whooshing of the building’s ventilation system. Overhead, flashing, blindingly bright rectangles of fluorescent ceiling lights marched along in single file. I began counting them, memorizing the pathway so I could find my way back out again. Lines of closed doors whirred past on either side. No windows. No wall clocks. I can’t feel my legs.  What time is it? I tried to lift my head up off the thin pillow to look at my legs, to look for a clock, but I was too tired. Have they given me medication to knock me out?

A burly male orderly was behind my head, pushing my body on the gurney through the hallways. I could see long nose hairs in his cavernous nostrils and smell occasional wafts of stale coffee breath. He didn’t speak. As we passed people in the hallways, white-coated and blue scrub-wearing staff members, they all stopped briefly, turned sideways, backs against the walls, in order to let us pass. They furtively glanced down at my face, but their eyes always flitted away, never making eye contact.

I thought of Kafka’s Metamorphosis’ as I lay flat on that hospital gurney being wheeled through numerous hallways, then wheeled into an extra-wide elevator lined with rubber bumpers, and then upstairs to the neurology floor of the hospital and checked in by a sweet young nurse who greeted me as Dr. Ensign and I realized she had been one of my students in a health systems course taught the previous spring in a large auditorium I think I was rolled past on this gurney on my way up here—but that can’t be right. I had started thinking in run-on sentences. This young nurse, my student, handed me a tiny plastic cup filled with lilac-colored liquid. I looked at her, trying to remember if she was the sort of student I could trust to give me the right medication. Then, I swallowed the sick-sweet syrup with a metallic aftertaste. I awoke in a darkened room with a spotlight directed at my right arm, some young man thumping my veins and then drawing tube after tube of dark red blood.

After three days of hospital MRIs, X-rays, spinal taps, more blood draws, nerve-conduction tests on my legs, and totally annoying flashing light tests in my eyes, the grey-bearded senior attending neurologist appeared in my hospital room, accompanied by a fluttering group of neophyte short-white-coated medical students. He told me that the good news was that they had ruled out a spinal tumor, but that the bad news was that I had autoimmune transverse myelitis, meaning my body was allergic to itself and was causing a swelling of my lower spine.

“We’ll have to wait and see what it develops into. It can take a year or so before it progresses enough to make a definitive diagnosis,” the neurologist said, peering at me over his rectangular wire-framed glasses.

So I went home and waited. I desperately wanted a diagnosis, a unifying name for the bizarre collection of symptoms that kept sneaking up and sprouting into new signs—the concrete objective markers—and the symptoms—the soft subjective could be all in my head; could be just female hysteria. Symptoms such as my favorite: malaise, a general feeling of being unwell. Malaise, from the Old French mal= bad and aise= ease, space, elbowroom. I was in a bad space. I had not understood what it felt like to be in a body that betrayed me. I thought a diagnosis could bring me back into my body, bring me back into a good space.

The numbness slowly resolved, although my toes continued to turn blue, as did my fingers. Then, all of my joints began to swell. I spent the next year going to various specialists and sub-specialists, one of whom drew fourteen tubes of blood all in one visit, in order to run a panel of obscure and insanely expensive tests, of which the results were inconclusive. Another specialist drew my blood, extracted the serum and injected it into my forearm in order to measure my body’s allergic reaction—to myself. I tried complementary medicine and went to an acupuncturist who had been an internal medicine physician but had burned out on working within the medical system. He told me the story of his final days in medicine: “I told the administration that I wouldn’t take it anymore and I walked out,” he said. “Now don’t move because I’m going very close to your heart,” he added as he jammed a large needle into the middle of my sternum. A large purple bruise bloomed on my chest for weeks afterwards, taking my mind off my blue toes and swollen joints.

I was grateful for my university-sponsored health insurance, but was tired of all the medical encounters that seemed only to lead to more medical encounters. What I dubbed my ‘mystery illness’ morphed into a diagnosis of mixed connective tissue disorder (MCTD), which is really something that can’t make up its mind between being lupus, or rheumatoid arthritis, or the totally freaky-scary scleroderma, where your skin and internal organs thicken and petrify while you are still alive. MCTD is a rare autoimmune disorder that attacks the fibers providing the framework and support for the body. Rare, as in I’m special? Or as in I’m cursed? I thought, as a specialist explained my diagnosis, my dis-ease, my mal-aise. As he told me my diagnosis, my world closed in, like the bedroom doors closing on Kafka’s man-turned-beetle.

Today my medical chart still lists a diagnosis of MCTD, but none of the freaky-scary petrifying stuff has occurred. I no longer run the medical circuit in search of more tests, more tubes of blood, more diagnoses, more jabs to the heart, more promises of a cure. I live with it as you would live with a curmudgeonly, truth-telling friend. It tells me when I’m falling back into the inhuman I can do it; I can do anything! mindset. I listen to my body, even as it continues to get lost in the impossible hallways at work. Most of the time, I embrace the stalactites, the career limbo of nursing ambivalence, and the bewildering staircases. Recently, I cleaned out my university office and recycled all my papers, academic books, and grant reports. I prepared to slow down my tenure track conveyor belt, step into a sabbatical, search for that tranquil courtyard that doesn’t exist on any map.

I chose a soft, calming color for the walls of my office. Then, after the maintenance crew had re-painted the walls, I realized I had picked a version of hospital green. I’ve decided to live with it, and to see what fine details of life it reveals.

*****

Addendum:

It is a year or so since I wrote this essay. My office at the University of Washington is painted the same hospital green. While on sabbatical last year I continued to search for that tranquil courtyard and I am happy to report that I found it—outside my own home. I have survived another (and last) academic conveyor belt bid and have been promoted to full professor. And it is based on this sort of ‘real’ (to me) writing, on public scholarship, on my work in health humanities and social justice. My UW office is now filled with shredded promotion material in preparation for making a paper mache academic mask that I will hang on my hospital green office wall. I firmly believe it is these sorts of things that are helping keep me sane and healthy.

Summer Reading Challenge 2016

IMG_7812Reading through the recent NYT article “12 New Books We’re Reading this Summer (and 6 Not So New),” with the list of summer reading by their book critics and staff, I was reminded that it is time to come up with my own summer reading challenge book list with a health humanities and social justice slant. Also, I was reminded to come up with a more diverse reading list than the one offered by the NYT. I did  similar list last summer (see previous blog post, Summer Reading Challenge with a Health Humanities/Social Justice slant ( June 2, 2015), with subsequent posts on my reading progress and reviews of the books.

My Summer 2016 Reading Challenge list of fifteen books is mainly composed of books I’ve acquired over the past few months during my cross-country travels, as well as from both the Association of Writers and Writers Programs (AWP) Conference in Los Angeles and the Health Humanities Consortium meeting in Cleveland. Four of the books on my list are truly ‘new’ books and the rest are new-to-me books. Here they are, listed from the bottom up as shown in the photo above:

Happy and thoughtful and humanistic summer reading everyone!

High Art, High Medicine, High Lead

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Woman looking at art, Cleveland Museum of Art. Photo credit: Josephine Ensign/2016

Cleveland: the city of high art, high medicine, and high lead levels. Home of the amazing Cleveland Museum of Art, with its recent $350 million renovation, including a glass-enclosed atrium, the city’s largest free public space (at 39,000 square feet).

I spent the past week living in Cleveland, Ohio, in a hotel next to the Cleveland Clinic Hospital, one of our country’s premier high-end, high-tech medical complexes. It is, of course, a private health care entity. The last time I visited the Cleveland Clinic was in 1979 when I was a (blessedly only briefly) ‘cardiac patient,’ referred there by my Oberlin College clinic physician for a bothersome heart rhythm problem–probably precipitated by too much caffeine and studying of medical ethics. I remember being inside a dark brick building, and if the clinic space back then had any artwork to speak of, I certainly don’t remember it.

A few days ago, touring the art collection in the main Cleveland Clinic Hospital and guided by one of their art program curators, I was struck by how much of it is cold, clinical, and high-tech–matching, I was told, the overall branding image of the hospital system. I was standing inside the hospital space where surgeons recently had performed the first U.S.-based uterus transplant (significantly, I believe, in a married, Christian white woman and mother of adopted sons). Here are a few examples of the hospital’s prickly artwork:IMG_6708

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‘The Ineffable Gardener and the Developed Seed” 2013, Stainless steel modules, by Lois Cacchini.

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Untitled (Rooftop View) oil on masonite, 1957, by Hughie Lee-Smith. Cleveland Art Museum. 

Cleveland is part of the Rust Belt now, and the town’s numerous boarded-up, crumbling factory buildings and houses are testament to the city’s economic decline. Cleveland is a city of 389,524 residents, the vast majority are African-American, and 39.2 of all residents live in poverty (the median household income is $24,701). Not surprisingly, the health care sector is Cleveland’s largest employer, with the arts also being a leading industry. (Source: Data USA from the MIT Media Lab–a great source of up-to-date and easy-to-use data visualization based on US government databases.)

When I checked into the Cleveland hotel at the start of my health humanities conference, a middle-aged white man from Germany was carrying a large container of bottled water. When I asked him about it he told me he’d read that Cleveland’s water supply was not safe and contained high lead levels, so he was buying his own water. He also told me he had flown in to be treated at the Cleveland Clinic.

Indeed, Cleveland has one of our nation’s worst problems with lead ‘poisoning’ but mainly from lead paint in deteriorating inner-city housing. The Cleveland neighborhood of Glenville, only blocks north of the Cleveland Clinic, had a 2014 study of lead levels in children under age 6 showing that 26.5% had levels exceeding the current CDC threshold of 5 micrograms per deciliter. (Source: NYT article “Flint is in the news, but lead poisoning is even worse in Cleveland” by Michael Wines, March 3, 2016.)  Lead, as we know quite well by now, at any level is a brain poison that permanently decreases IQ and interferes with a person’s ability to control impulses. A different spin on the “No Child Left Behind Act.”

This photograph, taken from the top floor of the Cleveland Clinic Hospital and looking north towards Lake Erie, shows the downtown skyline to the left, and to the right (the darker, low-lying area) is the Glenville neighborhood. As I stood gazing at the Cleveland skyline from atop this very antiseptic and removed private hospital, I couldn’t help but wonder how anyone can possibly believe in trickle-down economics. To me it is the ultimate of self-serving delusions. IMG_6715

Endurance Test

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“No Resilience Here” mixed media, 2015, Josephine Ensign

What helps us—as health care providers, as caregivers, as people, as communities— endure the various traumas and sufferings we’re exposed to indirectly and that we experience ourselves?

Resilience is something that is often cited as an answer to this question. Resilience is a term that has been adapted from engineering to describe the ability of a substance, such as a metal, to return to its previous state after being stressed—the substance is able to bounce back, to return to steady state, to normal. The American Psychological Association definition of resilience is “the process of adapting well in the face of adversity, trauma, tragedy, threats or even significant sources of threat.” Resilience is sometimes referred to as ‘good survival.’

Over the past several decades there has been an explosion of research on resilience, mainly focusing on individual risk and protective factors. The main protective factors are, not surprisingly: 1) the formation of a firm, secure attachment to a parent or caretaker figure within the first few years of life; 2) prosocial behaviors and personality traits, such as empathy, a positive attitude, capacity for forgiveness, and ability to ‘play well with others’; and 3) a sense of personal agency, of being able to act, to do something positive both in the midst and the wake of trauma. The main risk factors are, not surprisingly, the opposite of the protective factors.

Most research on resilience has focused on the individual, is Western-centric, and has increasingly become biologically reductionist, narrowing in on the epigenetics of trauma and resilience, finding individuals and entire communities of people with ‘short alleles’ and DNA methylation—genetic markers of increased vulnerability to the adverse effects of trauma. That these are most often individuals and communities already marginalized by poverty and racism and other socially-constructed vulnerabilities, serves to further label and pathologize people and communities. It marks them as damaged goods. As irredeemably, permanently damaged goods. It typically ignores the mounting research evidence indicating that such epigenetic damage is largely reversible and preventable with appropriate life experiences—with access to appropriate life experiences, including effective therapeutic interventions.

Resilience-building interventions include cognitive-behavioral psychotherapy; therapies focused on building the capacity for empathy and forgiveness; narrative storytelling and other meaning-making therapies; and therapies aimed at increasing social support—social support that includes social touch—the human version of primate grooming. Good touch: a handshake, a peck on the cheek, or a hug in greeting; a hand brushing a shoulder in sympathy; sitting close to a stranger on a bus; washing the feet of people who are homeless, people who are rarely touched in a good way.

This all sounds good, but resilience irritates me. The whole saccharine notion that the human body, the human psyche, and even entire communities can be like heated metal—stressed and stretched but not broken—that they can bounce back, return to steady state, and perhaps be stronger and wiser for the experience?  Certainly, I believe that strength-based research and interventions are an important and sizeable improvement over our traditional deficit models so prevalent within health and social services. But resilience has its dark side.

Resilience tends to glorify trauma, and contributes to an addiction to pain and to suffering: What doesn’t kill you makes you stronger. Be the hero of your own life. Cancer saved my life, made me a better person. And Hemingway’s “The world breaks everyone, and afterward, some are strong at the broken places.” It glosses over the fact that trauma and resilience are not equal opportunity affairs, that some people (women, children, people with various disabilities, non-whites, and gender nonconforming people), and some communities (marginalized by homelessness, poverty, racism, and the effects of colonization) are much more likely to be exposed to traumas in the first place, and they have fewer resources to weather and recover from the traumas. It ignores the larger structural inequities, as well as the stigmatizing narratives we place on certain people, communities, and entire impoverished countries. As physician, anthropologist and global health champion Paul Farmer reminds us, “The capacity to suffer is, clearly, part of being human. But not all suffering is equal, in spite of pernicious and often self-serving identity politics that suggest otherwise.” (p 288)

Trauma never happens in isolation, even if it is a one-time trauma that occurs to one individual, trauma happens within the context of a particular family, community, cultural, social, and time period. An individual trauma ripples outwards as well as inwards. Suffering from trauma is always a social process; recovering from trauma is always a social process. If suffering is a universal yet unequal human experience, being able to tell and listen to illness and trauma narratives matters. But it doesn’t stop there. Physician, anthropologist, and expert on illness narratives Arthur Kleinman admonishes us that it is the moral and emotional cores of these experiences that matter much more, including the cores of social suffering that especially affect marginalized people.

Kleinman also encourages us to ask the question, 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.” (p 119)

Note: This is an excerpt from a work-in-progress, Soul Stories, a collection of essays on the role of narrative in health and healing.

Sources:

Paul Farmer. ‘On suffering and structural violence: a view from below.’ In: Violence in War and Peace. Edited by Nancy Scheper-Hughes and Philippe Bourgois. (New York)/ Blackwell Publishing (2004). pp 281-289.

Arthur Kleinman. “The art of medicine: how we endure.” The Lancet. January 11, 2014. Vol 383. pp 119-120.

 

Sick Nurses

V0026904 Florence Nightingale. Photograph by Millbourn.
Creative Commons. Photograph by Millbourn. Credit: Wellcome Library, London. Wellcome Images images@wellcome.ac.uk

Within the profession of nursing, we have a long and distinguished line of sick nurses who write. There was, of course, the mother of all sick nurses, Florence Nightingale, who, after the Crimean War, took to her bed with a mysterious illness that lasted for the last thirty years of her life. It was during this time that she wrote prolifically–letters and missives to the War Office, health care and social reform reports, and her now famous book Notes on Nursing.

Was her illness neurasthenia (nervous exhaustion, an actual medical diagnosis until the 1930s)? Was it a clever ploy to draw sympathy and support for her zealous cause of reforming nursing, hospitals–indeed, all of health care? Was it a clever ploy to have more protected time for writing and reflecting on the state of the world in need of her reform? Was it–as was taught to nursing students as late as the 1970s–the effects of tertiary syphilis? Was it–as current medical historian Philip A. Mackowiak postulates–a combination of bipolar disorder, PTSD from the horrors of the war, ‘Crimean fever’/brucellosis contracted from contaminated milk while in Turkey–and finally, the most likely cause of her death at age 91, Alzheimer’s Disease? (From his book, Diagnosing Giants: Solving the Medical Mysteries of Thirteen Patients Who Changed the World, Oxford UP, 2013.)

As Lytton Strachey puts it in his wonderfully intelligent short biography of Florence Nightingale in Eminent Victorians (Bloomsbury Press, 1918): “Her illness, whatever it may have been, was certainly not inconvenient. (…)  Lying on her sofa in the little upper room in South Street, she combined the intense vitality of a dominating woman of the world with the mysterious and romantic quality of a myth.”

Lady with the Lamp. Ministering angel. Pious Christian woman relieving suffering in the world. Nursing as a religious calling. These are the nursing myths we still live with. The nursing myths we as nurses–and especially as nurse writers–still perpetuate.

That’s what I kept thinking today as I read nurse and poet Cortney Davis‘ new book When the Nurse Becomes a Patient: A Story in Words and Images (The Kent State UP, 2015). Her book is part of the ‘Literature and Medicine’ series that includes the wonderful short story collection What’s Left Out by physician writer Jay Baruch. (Baruch’s book also happens to have one of my favorite book cover designs–check it out here.)

Cortney Davis is a seasoned nurse practitioner and a talented poet. I especially like her poem “What the Nurse Likes” included in the now almost classic book, Between the Heartbeats: Poetry and Prose by Nurses (edited by Davis and Judy Schaefer, U of Iowa Press, 1995). But over the past decade or so, Davis’ work has become stridently religious (Catholic) and proselytizing (anti-abortion among other matters). The fact that her latest book was published by a reputable (and secular) university press, and has just received the Book of the Year Award (for the category ‘Public Interest and Creative Works) by the American Journal of Nursing combined to make me look forward to reading the book.

When the Nurse Becomes a Patient tells the story–through pictures and words–of her experience with life-threatening complications of what was supposed to be routine day surgery in 2013. She had an extended hospital stay and then convalesce at home. Davis, a life-long writer, found that writing had ‘left her’ but that she was able to paint images of her illness experience.

The print version is a children’s picture book size and the printing quality of Davis’ twelve paintings depicting her illness is quite good. Favoring Davis’ poetry over her prose, I was disappointed to find that it was plain prose descriptions that accompanied each full-page image of the corresponding painting. Two of the prose/painting combinations, “On a Scale of One to Ten” and “My Husband Cares for Me Tenderly” are both quite powerful and effective at evoking important aspects of her individual-yet-universal illness experience. But most all of the remaining ten prose/paintings were over-the-top religious, what with Dark Nights of the Soul (parts one a two no less), last rites (with a priest figure), and and “Angel Band” with–yes–nurses as angels and the figure of a nun in full habit by the patient’s bedside. And, of course, there was the requisite redemptive suffering bit in “I Offer My Suffering.”

Davis, like everyone else, is free to have and write about their own personal religious beliefs. People who are ill are typically driven to face existential crises, which can lead them to deepen (or abandon) a personal faith. But books like this make me despair of nursing ever breaking free of its overly-pious Victorian roots. It’s something that I suspect even Florence Nightingale herself (pre-cognitive decline) would have wanted for nurses and for the profession of nursing. We are not angels and suffering is not redemptive.

The Importance of Being Human(ities)

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Restroom sign at the University of Washington’s Intellectual House. Photo credit: Josephine Ensign/2015

All of our current ‘wicked problems’ such as racism, homelessness, environmental issues, human gene editing, violence against women, mass murders, and terrorism, cannot be addressed constructively by science or technology. As the late Donald Schon wrote:

“In the varied topography of professional practice, there is a high, hard ground overlooking a swamp.  On the high ground, manageable problems lend themselves to solution through the use of research-based theory and technique.  In the swampy lowlands, problems are messy and confusing and incapable of technical solution.  The irony of this situation is that the problems of the high ground tend to be relatively unimportant to individuals or society at large, however great their technical interest may be, while in the swamp lie the problems of greatest human concern.” (Schon, D.A. “Knowing-in-action: The new scholarship requires a new epistemology,” 1995, Change, November/December, 27-34.)

In order to muck through the swampy wicked problem areas, we need–more than ever–the humanities. Before we continue down the path of denigrating the humanities (Rubio wanting more welders/less philosophers) and decimating university programs in the humanities, we need to ask ourselves if this is who we want to be–both individually and collectively. Where would we be without grounding in history, language, literature, comparative religion, philosophy, ethics, archeology, the theory/philosophy of law, and the criticism/theory of art? The excellent short (7 minute/ June 2013) video “The Heart of the Matter” by the American Academy of Arts and Sciences explores this question. “No humanities? No Soul,” George Lucas states. 

William ‘Bro’ Adams, Chairman of the National Endowment for the Humanities (NEH), gave a speech this past week at the University of Washington’s newly opened (and gorgeous) Native American center, called the Intellectual House. Adams reminded us that both the NEH and its sister organization, the National Endowment for the Arts, are 50 years old this year. In 1965, President Johnson signed the act designating both the NEH and the NEA, and he made them a central part of the Great Society.

Adams was, of course, ‘preaching to the choir’ in that most of the audience consisted of academic-types from the different disciplines traditionally considered the humanities. I didn’t recognize anyone else from the health sciences, and none of the audience members asking questions identified themselves as being from science or technology fields. This was disappointing, although not surprising. After all, even physically the UW’s Intellectual House is surrounded by buildings that house the humanities and is a far trek from health sciences or any of the science and technology buildings. But as Adams emphasized towards the end of his talk, there’s a great need to increase the intersection of the humanities with science/technology/medicine (health sciences more broadly). The humanities bring the important tools of reflection. Reflection on what it means to be human. Reflection of what it means to be a citizen.

Gratitude for Mentors

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Dr. Lorna Mill Barrell (1931-2014), a nursing mentor of mine, after lunch in the Jefferson Hotel, Richmond, Virginia in 1996.

We now have the ‘science of gratitude’ to back what we’ve already known: gratitude is good for us, both individually and collectively. That we have a national holiday named for gratitude is something that–despite the complicated colonization and empire-building historical roots–I am thankful for.

Over the past four months, I have had the privilege of interviewing a variety of people in the Seattle area who work (or live) at the intersection of health and homelessness. These interviews are part of the oral history component of my ongoing Skid Road project, exploring the historical roots of ‘charity’ health care in King County, Washington (the county within which Seattle is located). One of the first open-ended interview questions I pose to people is, “Who or what has most influenced your work and life?”

People I interview typically pause for a moment after I ask this question, they gaze at some corner of the room as if seeing pleasant ghosts, and then they launch into detailed descriptions of people and events essential to who they are as people and to the work they do. Most people identify one or two key people in their lives who provided a sort of moral compass steering them in the direction of compassion–for their own humanity, as well as for other people. Parents. Teachers. Counselors or therapists. Professional mentors. They can easily tell a specific story of lessons they learned from these key people. And due to my use of snowball sampling–asking them to identify people I should try to interview–I have been able to complete oral history interviews on several generations of mentors.

These interviews have led me to reflect more deeply on the people in my life I am grateful for, people who have influenced who I am and what I do. I am also reminded of the wisdom of Rachel Naomi Remen, MD and her healing work with physicians, nurses, and other caregivers. I often introduce my students to her Heart Journal daily practice. For this, she advocates a 10-15 minute quiet time at the end of the day where you review your day, then write the first things that occur to you when you ask yourself three questions: 1) What surprised me today? 2) What moved me or touched my heart today?, and 3) What inspired me today?  Attention and gratitude.

As a nurse and a teacher, I remember two people who have had the most influence on my work, my life. One is Lorna Mill Barrell, RN, PhD who came into my life when I was seriously considering dropping out of nursing school. It was in November of 1983, my final year of the BSN program at MCV/VCU, and I had just been informed by my community health clinical instructor that she was giving me an ‘F’ on my final clinical rotation project paper. “I don’t see how this has anything to do with nursing,” she wrote across my project paper’s title, “The Health of Richmond’s Homeless Population.” I contested her grade and that’s how I met Lorna, who was the chair of the department my instructor worked in–she was my instructor’s boss.

I remember Lorna’s welcoming and nonjudgmental attitude towards me when I came into her office to meet with her about my grade. I’m sure I came across at first as indignant, haughty, and angry. At the time, I wasn’t just contesting my community health grade, I was also contesting my desire to be a nurse at all. She offered to read and re-grade my paper. Thanks to her intervention, I not only passed community health (she changed my paper grade to an ‘A’), but she helped convince me to finish nursing school and go straight into their master’s program for becoming a nurse practitioner. She was my thesis advisor and the co-author of my first published academic journal article. Within a year of graduating and starting my first job as a nurse practitioner working with homeless and marginalized patients at Cross-Over Clinic, Lorna hired me to teach a community health clinical course.

The other mentor I draw on as inspiration for my current work is another MCV/VCU teacher–from the medical school though–who I only remember as Chaplain Bob. During my first semester of the BSN program, fresh out of a brief stint in a MDiv medical humanities program, I convinced him to let me take his medical school elective course on death and dying. He approached this topic in our small seminar-style class, from a health humanities perspective, having us read and discuss Tolstoy’s The Death of Ivan Ilyich, among other works of art and literature. He also encouraged us to write our own poetry and short stories. I took that assignment seriously and wrote a chapbook-length collection of poetry. Chaplain Bob gave me an ‘Aa’ (not entirely sure what that grade really is) for the course, but he also enthusiastically encouraged me to continue my creative, reflective writing. I kept that chapbook. And here, impossibly at age twenty-two (meaning–not that it is great poetry but that is impossibly so long ago) , I wrote:

The Process

Sitting by the hour/ listening to the drone: “The Patient. The Client./And don’t forget the Significant Others./ By all means, keep in mind the Nursing Process.”

“We’re training you to be/ Professionals./ We want you to think/ Independently./ Here, take this test/But don’t think too much/just fill in the dots/the computer will understand.”

We learn to forget,/ to not feel, to not know./ It will hurt too much,/ and it certainly won’t help /us to be professionals.

and…

Waiting 

Sitting on park benches/writing 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 that 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.

____   To all my mentors, named and unnamed (and in Bob’s case, half-named): thank you. Remember to pass it on.

 

 

 

Carrying Stories: Beyond Self Care

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Girl with Balloon, street art by Banksy. This one found at intersection of K-Road and Queen Street in Auckland, New Zealand. Photo credit: Josephine Ensign/2015.

What to do with difficult stories? Stories of refugees, victims of mass shootings, of hate crimes, of rape, of torture victims, of people dying alone and unnoticed ?  It all gets overwhelming and depressing to hear or read these sorts of difficult stories, to carry them in our hearts, to bear witness to so much suffering in the world.

Of course, for many fortunate (perhaps unfortunate?) people, there is the option of tuning out these stories, turning off the news, unplugging from any non-vacuous form of social media. Taking a break from difficult stories.

But what about all the other people who cannot or choose not to disconnect? What about people whose work involves listening to these stories on a daily basis? Frontline health care providers who work with people experiencing trauma (physical, emotional, sexual). First responders. Counselors, mental health therapists, lawyers. Human rights activists. Researchers working on social justice issues. What can they do to, if not prevent, at least deal effectively with, vicarious or secondary trauma? And for those of us who teach/train/mentor students in these roles, how do we prepare students to be able to carry difficult stories while maintaining well-being?

In a previous blog post, “Burnout and Crazy Cat Ladies,” I explored the issue of ‘too much empathy’ and of pathological altruism, linking to some of the (then/2011) current research. After writing that post and some related essays, I began incorporating a new set of in-class reflective writing prompts for soon-to-be nurses in my community/public health course. I used these in a class session I titled “Public Health Ethics, Boundaries, and Burnout.”

The first writing prompt: ‘What draws you to work in health care? What motivates or compels you to do this work?’ And then later in the class session– after discussing professional boundaries (how fuzzy they can be), individual and systems-level risk factors for burnout, and asking them to reflect on how they know when they are getting too close to a patient, a community, or an issue–I gave them the follow-up writing prompt: ‘Referring back to what you wrote about what draws you to work in health care, what do you think are the biggest potential sources of burnout for you? And what might you be able to do about them?’

Feedback from students about this in-class reflective writing exercise and the accompanying class content on boundaries and burnout, was invariably positive. Many of them said it was the first time in their almost two years of nursing education that anyone had addressed these issues. I understand that patient care, electrolyte balances, wound care and all the rest of basic nursing education takes priority, but it makes me sad that we don’t include this, to me what is fundamental and essential, content.

“…people who really don’t care are rarely vulnerable to burnout. Psychopaths don’t burn out. There are no burned-out tyrants or dictators. Only people who do care can get to this level of numbness,” Rachel Naomi Remen, MD reminds us in her book, Kitchen Table Wisdom: Stories That Heal (Riverhead Books, 1996). Something to remember when we are feeling overwhelmed by difficult stories.

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Here are some excellent resources: