Field Notes on Witnessing

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

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

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

Soul Stories: The Book and I

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

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

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

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

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

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

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

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

Northwest Narrative Medicine

nwnmlogo

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

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

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.  

IMG_2769

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: