It’s Time to Read (and Write) Like You Give a Damn!

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Authors at the University of Washington Libraries’ 12th Annual Literary Voices event, May 2017.

“It’s time to read like you give a damn!” is the tagline admonishment to the University of Washington Health Sciences Common Book series, of which my book, Catching Homelessness: A Nurse’s Story of Falling Through the Safety Net, was this last academic year’s Common Book. I have added “write like you give a damn!” to remind me of why I write, why I read, and why I do the work that I do. It is the moral imperative of working towards a socially just world. As George Orwell stated so eloquently in his essay “Why I Write,” there are four great reasons to write:

  1. Sheer egoism
  2. Aesthetic enthusiasm
  3. Historical impulse
  4. Political purpose—”and political purpose 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.”

Catching Homelessness was published a year ago today. I am grateful for what the years of researching, writing—and living—the book have taught and continue to teach me. I think about the wise words of Sherman Alexie (as quoted by the wise woman author and teacher Pam Houston—whose 1992 book Cowboys Are My Weakness is partially responsible for my cross-county move to Seattle in 1994). This is from a reading Alexie gave in July at the Institute of American Indian Arts Low Rez program:

“How are you going to tell your story, so that people who don’t know anything about your story get something from it. And you are not in charge of what they get. Sure, you are vulnerable, but you are still a storyteller.”

Sherman Alexie was speaking about his new memoir You Don’t Have to Say You Love Me (New York: Little, Brown and Company, 2017), which is mainly the story of his complicated grief for his mother, Lillian Alexie, who died several years ago. And about the health effects of intergenerational trauma that he has experienced. In his memoir, Alexie writes about his childhood growing up in poverty on the Spokane Indian Reservation in Washington State—about his serious health issues and childhood sexual abuse—about his mother’s rape and discovering that she is the product of a rape. I am dismayed at the insensitive (and as I read it, racist and misogynistic—questioning, for instance, the veracity of his mother’s rape) June 13, 2017 NYT review by Dwight Garner “Sherman Alexie’s Complicated Grief for his Mother.

Alexie, in a recently published open letter, writes eloquently about the re-traumatizing and triggering effects on him that having his memoir out in the world has had. He states that he needs to “take a big step back and do most of my grieving in private.” While his memoir remains in the public domain, he has canceled the rest of his promotional tour events for the rest of the year in order to take care of his mental health—to tend to the ghosts of his mother and ancestors.

I applaud his letter and his honesty. I also understand what he means when he writes of ghosts and hauntings. Part of my motivation for writing Catching Homelessness was to deal with the presence of ghosts in my childhood and my life, which were and are marked by intergenerational trauma. One of the most frequent questions I have been asked by readers of my book is something along the lines of, “But tell me, did you really see the ghosts you write about?” As if a memoir, a book of non-fiction, cannot include something as unverifiable—as poetic— as a ghost? As if an educated, scientifically-grounded person cannot believe in, much less write about believing in, ghosts?  I imagine that the person asking me this question has had a fairly easy life. I’d like to think that they realize—at least at some level—their privilege in that regard and are genuinely attempting to reach for some level of empathy and understanding for what it is like to be haunted.  That is what “reading like you give a damn!” is all about: at the very least it is stepping outside your own comfort zone, finding the capacity for empathy leading to action.

And here I share the thought-provoking outreach packet for Catching Homelessness, put together by my social-justice-in-action colleagues at the University of Washington. 2016-2017 Outreach Packet copy

Catching Homelessness book launch and benefit for Mary's Place. Elliott Bay Book Company. August 2016. Photo credit: Karen Allman

Leave Things Better Than You Found Them

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Concrete jungle courtyard (when first built in 1947 and now) of the University of Washington Health Sciences.

Leave things better than you found them was a lesson I was taught as a nineteen-year old college student during my study-abroad experience. That, along with celestial and non-celestial navigation, how to sail a 125′ Topsail Schooner, how to survive a Force 9 gale off the coasts of Labrador and Newfoundland, how to identify a multitude of sea creatures—including a 70′ Balaenoptera musculus (blue whale), how to take depth soundings of a Newfoundland fjord while perched in the bow of a tiny dinghy, and how to write and type a scientific report while rolling around on the high seas. Oh yes, and the poetics of sea shanties. All skills and knowledge and experiences that have served me well in life, reinforcing for me that value of experiential, immersion study-abroad programs.

But it is the seemingly trivial lesson of leaving things better than you found them that comes back to me most often, including this past week during the vicissitudes of the latest round of “let’s mess up our U.S. healthcare system even more.”

During my S.E.A Semester study-abroad program, Captain Carl Chase, our taciturn and highly capable and salty leader, sat us all down the first day of our voyage and explained that, in addition to our academic and sailing and galley work for the next six weeks, we were expected to find one thing we could do to do leave the ship in better shape than we had found it. He left it up to us to figure out what to do and then he would provide the materials and guidance necessary to complete our project. My project became the carving of a wooden knob for the battered galley teapot which had lost its knob. I liked to complain about the difficulty prying the top off the teapot and then realized I could—and should—stop complaining and do something to fix the problem.

Whenever I find myself complaining about things, like the ugly weed-filled concrete planters in the main courtyard at work, or the direction our country is going, or the direction the profession of nursing is going, or any of the myriad of issues I care about, I remember Captain Chase and the teapot knob and try to find some achievable improvement I can make.

And I know I am not alone in this effort. For instance, the Canadian nurse writer Tilda Shalof was recently highlighted in the Toronto Star article and accompanying video interview, “Medical Waste Becomes Massive Medical Art Mural.”  As she prepares to retire from her decades working as an ICU nurse, Shalof turned the acres of brightly-colored plastic covers to various medical supplies into a beautiful art mural to adorn the hospital’s walls.

Skeletons in the Closet

IMG_2792.jpgOne evening this past weekend I watched the indie movie “To the Bone” (2017) which deals with the topic of eating disorders, particularly anorexia nervosa—with the highest mortality rate of any mental illness. People waste away, become skeletal like concentration camp victims, and literally starve themselves to death. Unless, that is, they are fortunate enough to be able to access effective and compassionate health care and recover from this devastating illness. As does the 20-year old lead character in “To the Bon,” Ellen, as well as the actress, Lily Collins, who plays her in the movie—and as does the writer/producer of the movie, Marti Noxon. Both Collins and Noxon have struggled with anorexia and Noxon based the screenplay on her own experience.

I had read about some of the controversy surrounding this film, including critique that it glorifies thinness and eating disorders in general, as well as that it can tigger viewers into a recurrence or worsening of their own anorexia. Although I am not in favor of the over-use of trigger warnings, I did feel that the brief written warning at the beginning of the movie was tasteful and appropriate. As I remember, it stated something like “The following movie includes content that some viewers may find difficult to watch.”

Having lived through anorexia as a teenager, and having provided primary health care to many young people struggling with eating disorders (and across the socio-economic spectrum), I can say that “To the Bone” is an honest, nuanced, and not overly-sensationalized depiction of the lived experience of eating disorders. The movie does not glamorize thinness or eating disorders. It appropriately alludes to the linkage between eating disorders and childhood trauma, including sexual abuse. The supposedly unconventional heroic physician in the film, Dr. William Beckham, played by Keanu Reeves, is borderline obnoxious in that Robin Williams ah-shucks smiley face sort of way. And the group home eating disorder treatment center where the main character Ellen goes in a last-ditch effort to find a cure, is a gorgeous and expensive-looking setting. It helps that Ellen’s elusive father (he never appears in the movie even for a family therapy session) is portrayed as having a well-paying job in order to pay for that group home inpatient therapy. Even patients with relatively comprehensive health insurance often have difficulty accessing such treatment for eating disorders.

My assessment is that “To the Bone” is a good and honest film about an important mental health issue, and it is written/produced by a woman and features mostly women in the leading roles (luckily, Reeves has relatively little screen time). I can see this film being used effectively in nursing and other health professions educational programs for many years to come.

  • A good resource for more information on eating disorders (including a toll-free, confidential help-line) is the National Eating Disorders Association.
  • And about that actual skeleton in the closet included in this post… It is a human (not plastic) skeleton enclosed in its own wooden closet on wheels and is located in the University of Washington School of Nursing’s new simulation/learning lab. I took her photograph last week and am currently trying to discover anything more about who she was.

U.S. Healthcare (Politics) is Bad for Your Health

FullSizeRenderThat U.S. healthcare is bad for your health is something that is well-documented yet not widely known. Last year, researchers from Johns Hopkins University published the British Medical Journal article “Medical error—the third leading cause of death in the US.” Yes, that is correct. The top three leading causes of death in the U.S. are (in order): 1) heart disease, 2) cancer, and 3) medical error—death resulting from medical/health care itself.

But lately it occurs to me that U.S. healthcare politics is bad for our collective health as well. Especially the current state of healthcare politics being bashed around by the U.S. Senate Republicans with their widely unpopular American Heath Care Act—now called the Better Care Reconciliation Act, but also referred to as Trumpcare. The latest estimates are that 22 million Americans would lose health insurance under the Republican Senate health bill.

Last night I attended the town hall meeting on health care by U.S. Senator from Washington State Maria Cantwell, held at the University of Washington. It was her first town hall meeting in many years and was well-attended with a packed lecture hall of 600 or so people. The vast majority of audience members were older (than I am) white people, and from the questions they asked (and the occasional heckling), most were way left of center and perhaps even left of left. There were several social workers and mental health therapists who spoke about the increase in anxiety and depression among their clients/patients over the Republican move to repeal and replace the Affordable Care Act. Talbots-wearing middle-aged white women spoke of their sons being affected by the current opioid epidemic (and at least one of which was introduced to opioids by a hospital stay), and about their young adult daughters getting IUDs placed by Planned Parenthood—not because they currently needed them, but because of their fears of losing access to birth control.

The questions and comments from participants of the town hall health care meeting were tightly controlled by a lottery system, with Dr. Paul Ramsey, CEO of UW Medicine and Dean of the UW School of Medicine serving as moderator. Senator Cantwell’s responses were, well, predictable and politically-calculated, but then that is to be expected.

The most powerful part of the evening came from an African-American older man standing in the balcony area, holding a hand-made small sign, who spoke out passionately about how no one was talking about the Black Lives Matter issues, and said he was currently homeless, living on the streets near the University of Washington, and had a hard time getting access to mental health treatment. He spoke ‘out of turn,’ not having a lottery ticket number called. He was flanked by two police officers who, thankfully, allowed him to speak. Some audience members tried to silence the man, and at least one media/reporter in front of me took photographs of the man while he (the reporter that is) laughed. Curiously enough (or not), none of the media outlets reporting on this town hall meeting gave any mention at all of his comments.

Democracy is messy, and so is our healthcare (political) system.

Is health care a right or a privilege, and why? That is a question I asked a class of nursing students today. It’s a good question for all of us to consider. And, as one of my students pointed out today, really pay attention to that ‘why?’ at the end. Whatever our political and other beliefs, we need to question our own assumptions.

Speak out. And, for those of you with summertime reflective writing time to be had, I highly recommend you write and submit a 40-400 prose piece on the topic of Healthcare On the Line to Pulse: Voices from the Heart of Medicine.  

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Stealing Stories

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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

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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