Category: health humanities

Northwest Narrative Medicine

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

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

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

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.

The Hospital on Profanity Hill

Version 2When Harborview Hospital in Seattle opened its doors to patients in 1931, advertising posters portrayed the striking fifteen-story Art Deco building as a shining beacon of light, the great creme-colored hope on the hill overlooking the small, provincial town clinging to the shores of Puget Sound. “Above the brightness of the sun: Service” is what one poster proclaimed; in the bright halo behind the drawing of the hospital, were the smiling faces of a female nurse and her contented-looking (and either sleeping or comatose) male patient with a bandaged head.1

Harborview Hospital—King County’s main public charity care hospital—was built at the top of Profanity Hill, on the site of the former King County Courthouse and jail. Profanity Hill got its name from the steep set of over 100 slippery-when-wet wooden stairs connecting downtown Seattle to the Courthouse. One wonders if it also got its name from being at the top of the original Skid Road—now named Yelser Way—where in the early days of Seattle, freshly felled logs, mixed with a considerable number of public inebriates, skidded downhill together into the mudflats of Puget Sound.2 The term ‘skid road’ soon became synonymous with urban areas populated by homeless and marginalized people.

Counties are the oldest local government entity in the Pacific Northwest, and King County, which includes the City of Seattle, was formed by the Oregon Territorial legislature in 1852. From the beginning, the King County Commissioners were responsible for such things as constructing and maintaining public buildings, collecting taxes, and supporting indigents, paupers, ill, insane, and homeless people living in the county.3 Seattle, with its deep-water shoreline and rich natural resources, was built on the timber and shipping industries, which soon attracted thousands of mostly single and impoverished men to work as laborers. These industries, mixed with ready access to alcohol in the always ‘wet town,’ led to high rates of injuries. Serious burns came from the growing piles of sawdust alongside log or wood-framed houses heated by wood fire and coal. Then there were the numerous Wild West shootings and stabbings. As in the rest of the country at that time, wealthier families took care of ill or injured family members in their own homes, with physician home visits for difficult cases. The less fortunate relied on the charity of local physicians and whatever shelter they could arrange.

David Swinson ‘Doc’ Maynard, one of Seattle’s white pioneer settlers, was Seattle’s first physician and, in a sense, he opened King County’s first charity care hospital, an indirect precursor of Harborview Hospital. A colorful and compassionate man, Doc Maynard built and operated a 2-bed wood-framed hospital facility in what was then called the Maynardtown district—now called Pioneer Square—a Red Light district full of saloons and ‘bawdyhouses.’ Although she had no formal training, Maynard’s second wife, Catherine, served as the hospital’s nurse. Their hospital, which opened in 1857, closed several years later, reportedly because Doc Maynard insisted on serving both Indian and white settlers. Also contributing to the hospital’s demise was the fact that Maynard disliked turning away patients who could not pay for his services. Around this same time, Doc Maynard assumed care for King County’s first recorded public ward: Edward Moore, “a non-resident lunatic pauper and crippled man.”2 The unfortunate patient had to have his frostbitten toes amputated, and then once healed, was given an early version of ‘Greyhound Therapy’ and shipped back East.

But the true roots of Harborview Hospital began in 1877 in the marshlands along the banks of the Duwamish River on the southern edge of Seattle. There, on an 80-acre tract of fertile hops-growing land, the King County Commissioners built a two-story almshouse, called the King County Poor Farm. They built the Poor Farm in order to fulfill their legislative mandate. Not wanting to run the Poor Farm themselves, they posted a newspaper advertisement asking for someone to take over operation of the King County Workhouse and Poor Farm, “to board, nurse, and care for the county poor.”4 In response, three stern-looking French-Canadian Sisters of Providence nurses arrived in Seattle by paddleboat from Portland, Oregon. The Sisters began operation of the 6-bed King County Hospital facility in early May 1877.

In their leather-bound patient ledgers, the Sisters of Providence recorded that their first patient was a 43-year-old man, a Norwegian laborer, a Protestant, admitted on May 19th and died at the hospital six weeks later. The Sisters carefully noted whether or not their patients were Catholic, and in their Chronicles, they recorded details of baptisms and deathbed conversions to Catholicism of their patients. The hospital run by the Sisters of Providence had a high patient mortality rate, but the majority of patients came to them seriously injured or ill. Also, this was before implementation of modern nursing care: the Bellevue Training School for Nurses in New York City, North America’s first nursing school based on the principles of Florence Nightingale, opened in 1873.

In their first year of operation, the Sisters realized that the combination of being located several miles away from the downtown core of Seattle and the unsavory name ‘Poor Farm’ was severely constraining their success as a hospital. So in July 1878 they moved to a new location at the corner of 5th and Madison Streets in the central core of Seattle, and they renamed their 10-patient facility Providence Hospital. The Sisters designated a night nurse to serve as a visiting/home health nurse and they accepted private-pay patients along with the indigent patients, whose care was paid for by King County taxpayers. The Sisters of Providence agreed to provide patients with liquor and medicine, both mainly in the form of whisky, a fact that likely helped them attract more patients.2

The Sisters’ list of patients included mainly loggers, miners, and sailors in the first few years, later mixing with hotelkeepers, fishermen, bar tenders, police officers, carpenters, and servants as the town grew in size. Many of their early patients were from Norway, Sweden, and Ireland, echoing the waves of immigrants entering the United States. Diagnoses recorded for patients included numerous injuries and infectious diseases—including cholera, typhoid, and smallpox—along with ‘whisky’ as a diagnosis, which later changed to ‘alcoholism.’ Their patient numbers grew, from just thirty hospital patients their first year, to close to two hundred patients by their fifth year of operation. The Sisters expanded their hospital to meet the increasing patient population.

Growing religious friction between the Catholic Sisters of Providence and the county’s mainly Protestant power elite, contributed to the King County Commissioners assuming responsibility for re-opening and running the King County Hospital in 1887. The King County patients were transferred from Providence Hospital back to the old Georgetown Poor Farm facility. Then, in 1906, the King County Hospital was expanded to a 225-bed facility at the Poor Farm site. It remained there until 1931 when the new 400-bed Harborview Hospital on Profanity Hill was opened. The old Georgetown facility, renamed King County Hospital Unit 2, was used as a convalescent and tuberculosis center until it was closed and demolished in 1956.5 The area where the King County Poor Farm was located is now a small park surrounded by an Interstate, industrial areas, and Boeing Field.

Harborview Hospital, now named Harborview Medical Center, still stands at the top of Profanity Hill, although the area is now officially called First Hill and nicknamed Pill Hill for the large number of medical centers now competing for both real estate and health care market share. Harborview Medical Center is owned by King County, and since 1967, the University of Washington has been contracted to provide the management and operations. Harborview Hospital has served as the main site for the region’s medical and nursing education. Since 1931, it has been the main tertiary-care training facility for the University of Washington’s School of Nursing.

Harborview Medical Center continues to fulfill its mission of providing quality health care to indigent, homeless, mentally ill, incarcerated, and non-English-speaking populations within King County. It is the largest hospital provider of charity care in Washington State. In addition, it serves as the only Level 1 adult and pediatric trauma and burn center, not only for Washington State, but also for Alaska, Montana, and Idaho, a landmass close to 250,000 square kilometers with a total population of ten million people. Harborview Medical Center has nationally recognized programs, including the pioneering Medic One pre-hospital emergency response system, the Sexual Assault Center, and Burn Center. In addition, Harborview provides free, professional medical interpreter services in over 80 languages, and has the innovative Community House Calls Program, a nurse-run program providing cultural mediation and advocacy for the area’s growing refugee and immigrant populations.

Harborview remains a shining beacon on Profanity Hill, rising above the skyscrapers of downtown Seattle. At night, it is literally the shining beacon on the hill, with blinking red lights directing rescue helicopters to its emergency heliport, built on top of an underground parking garage on the edge of the hill. Sharing space with Harborview’s helipad is the narrow strip of green grass of Harbor View Park, with commanding views of Mount Rainier to the south, and of downtown Seattle and Puget Sound to the west. In the wooded area below Harbor View Park, extending down to Yesler Way, along the old Skid Road, are blue tarps and tents of the hundreds of homeless people living in the shadows of the hospital. Construction is underway to add a new public park, mixed-income public housing, and a new—and hopefully less slippery—pedestrian walkway connecting downtown Seattle to the Hospital on Profanity Hill.

Note: This was published in the “Famous Hospitals” section of Hektoen International: A Journal of Medical Humanities in Spring 2015. Since researching and writing this essay, I have continued research (including conducting oral histories) for my project “Skid Road: The Intersection of Health and Homelessness.”

References:

  1. Seattle’s First Hill: King County Courthouse and Harborview Hospital. http://www.historylink.org/index.cfm?DisplayPage=output.cfm&file_Id=7038. Priscilla Long, curator. Published March 22, 2001. Accessed November 5, 2013.
  2. Morgan M. Skid Road: An Informal Portrait of Seattle. New York, NY: Viking Press; 1951.
  3. Reinartz KF. History of King County Government 1853-2002. http:your.kingcounty.gov/kc150/service.htm. Published July 31, 2002. Accessed December 12, 2014.
  4. Lucia E. Seattle’s Sisters of Providence: The Story of Providence Medical Center—Seattle’s First Hospital. http://providencearchives.contentdm.oclc.org/cdm/ref/collection/p15352coll7/id/1651. Published 1978. Accessed October 1, 2013.
  5. Sheridan M. Seattle Landmark Nomination Application—Harborview Hospital, Center Wing. http://www.seattle.gov/neighborhoods/preservation/lpbcurrentnom_harborviewmedicalcenternomtext.pdf. Published May 4, 2009. Accessed November 21, 2014.

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.

Medical Maze: Part II

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Harborview Medical Center, Seattle. Photo credit: Josephine Ensign/2015

Threshold

The modern hospital traces its roots back to Greek temples of healing, which were often caves set near streams or pools of water. There was an elaborate set of initiations that ill people went through in order to enter the sacred space of healing from the outside profane world. Bathing and the donning of clean, flowing robes. Going barefoot and ridding oneself of rings or other jewelry. Then, being given a pallet in a large, communal sleeping space, an enkoimeteria, where patients slept side by side as they were to do centuries later in open hospital wards. The Greek temples of healing had stone tablets, iamata, set outside the entrances. The tablets were inscribed with healing narratives—testimonials—in the form of poetry or brief prose, all written in third person. Ancient Greek healing practices included bathing, exercise, special diets, dream divination, and bloodletting. Prayers at an altar at the threshold, the entrance to the healing space. Sacrifices of animals and offerings of food.

The business of hospitals, in Ancient Greece as well as now, is life, illness, and death. Everyone who enters the hospital as a patient emigrates—at least temporarily—to the land of the sick. It is a shadow-land, a liminal space where tides ebb and flow, a place that offers glimpses of the abyss. As the surgeon Richard Selzer points out, a hospital is alive: “The walls palpitate to the rhythm of its heart, while in and out the window fly daydreams and nightmares. It is a dynamism that is transmitted to the hospital by the despair and the yearning of the sick.” (p. 33).

*****

Quote above is from: Selzer, Richard. “Down from Troy, Part 1” in The Exact Location of the Soul: New and Selected Essays. New York: Picador, 2001, Print.