Side Effects May Include

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How can an artist turn the worst of experiences into art that is beautiful, powerful, and potentially even life saving?

Tamara Staples’s sister lived with bipolar disorder for many years, before taking her own life with a cocktail of the pharmaceuticals that had been prescribed to treat her. Following her sister’s death, Staples collected the contents of her sister’s medicine cabinet, sorted the thousands of pills, arranged them in patterns, and photographed them. She then translated the photos into wallpaper, a quilt, upholstery, dresses, and drapes to create an entire room covered in pill-based patterns. Staples was doing more than processing her grief and commemorating her sister.  She was creating art that reflects the tremendous scope of the poly-pharmacy epidemic in the United States today. (Poly-pharmacy is the simultaneous use of multiple drugs by a single patient; often these drugs cause multiple side effects, leading to yet more drugs being prescribed. The consequences of poly-pharmacy are little understood by patients, and often even prescribing physicians are unaware of the potential dangers in poly-pharmacy).

Blue Sky Gallery in Portland will have Side Effects May Include, an exhibit of Staples’s work, on view for the month of October.  In conjunction with Side Effects May Include, on Saturday, October 6 at 3 pm, I will be the moderator for  a panel discussion at Blue Sky about mental health and poly-pharmacy. The panel will include Tamara Staples, along with mental health practitioners and individuals with lived experience including John Herold, Director of Puget Sound Hearing Voices; Gina Nikkel, PhD, President and CEO of The Foundation for Excellence in Mental Health Care; and Sean Syrek, Department Director with the Mental Health Association of Oregon.

The exhibit and the talk are free and open to the public, so please help spread the word.

Poetry, History, and the Grenfell (Medical) Mission

Imagine if the nearest medical care came to you via boat — or dog sled.  Now imagine if you were the practitioner delivering that care, traveling through Labrador, providing medical treatment to remote communities. In June of 1940, Celesta Gerber, still two months shy of her 27th birthday, left her home in Indiana to volunteer as a nurse with the Grenfell Mission. She fell in love with Labrador, with the people she served, and in particular with a young fellow named Gordon Acreman, and ended up staying in Labrador for the rest of her life.

I’ve been working on a cycle of poems about her life.  Ars Medica, the Canadian journal of medical humanities, has just published five of those poems.  You can access them here: http://journals.sfu.ca/arsmedica/index.php/journal/article/download/488/156

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All of the details in the poems are true. Especially the part about the husky pups.

Nurses played a crucial role in the Grenfell Mission, often working more or less independently of physicians.  And because virtually all of the nurses were women and the physicians were men, their professional independence had implications for what we might assume about “traditional” gender roles.

This use of literature, whether poetry or fiction, to convey historical details about what life was like in another time and place is what I love most about creative writing.  It’s been fascinating to see how this can overlap with the scholarly work I do in medical humanities. There were many other nurses who served with the Grenfell Mission, including Nurse Jupp, who appears in one of the poems.  I’d love to learn, write, and teach about more of them.

Finding Purpose: Honing the Practice of Making Meaning in Medicine

Despite decades of advances in diagnosing and treating a broad range of illnesses, many changes in our health care system impede true caregiving, leaving patients and practitioners dissatisfied and creating an emotional burden for practitioners that contributes to the staggering rates of physician burnout. Given this dissatisfaction and disconnection, practitioners and patients alike can benefit from structured opportunities to explore the expectations, assumptions, and emotions that shape our understanding of health and illness, and thus our experiences within the health care system.

So begins a new article demonstrating how group discussions of poetry—something that might seem irrelevant to medical practice or physical wellness—can foster communication, connection, and collective reflection for physicians, interprofessional health care teams, and groups that include practitioners, patients, and families, allowing participants to once again find meaning in medicine.

The article is published in The Permanente Journal (a medical journal akin to JAMA or New England Journal of Medicine—so my article lives among ones about cutting-edge medical research). You can download the PDF here: http://www.thepermanentejournal.org/files/2017/17-048.pdf It’s free, and written in an accessible style, and I am hoping it will do good work in the world, so please share it widely with poetry-types and medical-types whom you know.

 

What counts as “Health Humanities”? A lot, as it turns out.

(Note: this is a long entry, because it’s sort of a meta-post exploring the diversity of creative and critical work that comprises medical humanities, with links to lots of examples. Read it in chunks, if that’s easiest.)

I’ve promised participants in my latest medical humanities seminar that once they understand what medical humanities is, they’ll start to see it all around them. How many films we watch, poems or novels or memoirs we read, works of visual art we see, plays we attend, or songs we hear explore some aspects of illness, or disability, or caretaking, or the end of life, or some other theme that fits within medical humanities? And how many “real life” issues relating to health, health care, and mortality can benefit from the perspectives that philosophy or literature or history or other humanities disciplines offer? Medical humanities gives us a way to understand our most profound and sometimes most challenging experiences.

In fact, I realize now that I was “doing medical humanities” before I ever knew the field existed. Looking back, I see how this work represents some of the breadth of the field:DoraFactory Girl: Dora the Explorer and the Dirty Secrets of the Global Industrial Economy” is an article I wrote for Bitch magazine in 2008, not long after a slew of toys, many of them Dora the Explorer-licensed merchandise, being sold in the US were found to contain lead paint. In the article, I analyze intersections of popular culture, appropriations of “multiculturalism” by multinational corporations, and public health crises in the global economy. So this work of cultural criticism fits within medical humanities.

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My poem “The Calling” was published in Cloudbank, a literary magazine, in 2010. This is a creative work about patients and providers in a women’s health clinic, based on my experience working at Planned Parenthood in the early 1990s.

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Another of my poems was selected in 2012 to be inscribed on the wall of a hospital, the Kaiser Westside Medical Center, which opened in 2013. This creative work isn’t about patients or practitioners or health or health care. It’s about nature, and was chosen to be part of the hospital design because of research indicating that art contributes to a healing/healthful environment. Years later, a friend told me about when she was undergoing surgery to have cancerous tumors removed at this hospital. Just before the operation, her boyfriend noticed the poem on the wall. They had no idea a work of mine was there, and seeing it helped both of them with the emotions of the day.

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My first novel, The Secrets of Mary Bowser, is based on the true story of a woman born into slavery, who was freed and sent North to be educated, but then returned to the South, where, during the Civil War, she becomes a spy for the Union by pretending to be a slave in the Confederate White House. In this creative work, I incorporate details of illness and medicine to transport readers to a particular time and place, writing about yellow fever and smallpox epidemics, and about some of the very first use of vaccinations, which saved lives then just as they do today.

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The Secrets of Mary Bowser was published during the sesquicentennial (150th anniversary) of the Civil War, which The New York Times marked with a series entitled “Disunion.” I wrote several articles that appeared in Disunion, including a piece about Chimborazo, the largest Civil War hospital in Virginia. This history of medicine article discusses the creation and staffing of the hospital, focusing in part on race and gender and how southern Civil War nursing differed from northern Civil War nursing.

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My second novel is a retelling of Romeo and Juliet entitled Juliet’s Nurse, although the nurse is a wet-nurse, a woman hired to breastfeed. But again, writing about medical practices, particularly about pregnancy and childbirth, provided a way to make the era in which the novel is set (fourteenth-century Verona, Italy) real for readers. Even if you’ve forgotten most of the details of Shakespeare’s play, you might remember the line “A plague on both your houses,” which one character utters three times as he’s dying from a sword-fighting wound. Plague came to Italy in 1348, and within 2 years it killed 40% of the population. This devastating loss of life had huge effects on everything from marriage patterns to who could train for particular professions; in many ways, it contributed to the end of the medieval period and the beginning of the Renaissance. Imagining what it was like to live through such loss—and through the return to “normalcy” after the plague ran its course—became part of the way I explore how people enduring suffering, a major theme in the novel.

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Of course, Romeo and Juliet is a play about suicide, which means that Juliet’s Nurse became a novel about surviving the loss of a child to suicide. After it was published, I wrote a creative nonfiction essay about authors and suicide, and particularly how writing about losing someone to suicide might be a way to resist one’s own suicidal impulse. When “All the Years Ahead: On Committing Literary Suicide” was published in The Millions, my friend Paul Pottinger, a physician on the faculty at the University of Washington, said he wished someone would write something like that for medical doctors. That was the first I learned of the epidemic of suicide (and depression, and burnout) among physicians.

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Nearly a year later, Paul Kalanithi’s memoir When Breath Becomes Air was published. It recounts Kalanithi’s diagnosis with a rare advanced lung cancer, his treatment, and his final months of life–all of which happened when he was in his thirties, working as a neurosurgery resident. But when I read the book, I realized it also tells the story of another physician’s death: Kalanithi’s best friend in residency, who died by suicide. I ended up writing “The Hidden Dying of Doctors: What the Humanities Can Teach Medicine, and Why We All Need Medicine to Learn It” for the Los Angeles Review of Books. That was the first time I really thought of myself as “doing medical humanities.”

Since then, I’ve taught a class at the Portland Art Museum on how literature and visual art shapes our understanding of illness and the end of life. I’ve led humanities workshops at several medical conferences. I’ve spent a year as a Kienle Scholar in Medical Humanities at Penn State University. I wrote “When It Shifts,” a micro-memoir for Oregon Humanities magazine, about a sunny afternoon with a friend on hospice.

Recently, learning another friend, my poetry teacher and mentor Peter Sears, was at the end of his life, I began re-reading Peter’s work, and was amazed at how many of his poems were about illness or death or caretaking or, well, let’s just say “medical humanities.” That prompted me to reread poems I’d written, some years ago, and discover the same preponderance of themes. Books of poetry I taught years ago suddenly have new resonance for me, because I realize what they reveal about medical humanities. I reconnected with a friend from graduate school, only to discover he, too, has been drawn to this field. I’m revising a chapter for a book that Cambridge University Press will publish about film and television adaptations of Shakespeare’s King Lear, and discover that the television show I’m writing about uses Lear to explore what happens as a legendary Shakespearean actor dies of cancer. Or maybe it uses what happens when a legendary Shakespearean actor dies of cancer to explore Lear. (Turns out, Shakespeare is very relateable!)

And Tuesday I begin teaching my new medical humanities seminar on the heart. Because it turns out, all of this “doing medical humanities” is heart work.

 

New course! “Works of Heart: Literature and Medical Humanities”

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I’m delighted to be teaching another DELVE seminar for Literary Arts

Tuesdays, September 19–October 24, 6:30 p.m. –8:30 p.m.

Here’s the description:
Has your heart warmed, filled, skipped, soared, or been broken? Have you or someone you love suffered heart disease, heart attack, or heart failure? Why does the heart hold such linguistic and symbolic as well as biological import for us? In this seminar, we’ll delve into poetry, fiction, and memoir by authors from Edgar Allan Poe and Kate Chopin to Rita Dove, Margaret Atwood, Brian Doyle, and Maylis de Kerangal along with articles and popular culture representations of hearts and heart health, as we explore the metaphorical and literal functions of the heart. This Delve will also serve as an introduction to the medical humanities, in which content and approaches from the humanities are used to deepen our understanding of health, illness, medical care, and our emotional relationship to our physical bodies.

This seminar is open to the public, which is my favorite kind of teaching. I’m hoping we’ll have some medical practitioners enroll along with patients, families, and anyone else who’s interested. Spaces are limited, and participants must register in advance through Literary Arts https://literary-arts.org/product/delve-seminar-works-of-heart-medical-humanities/

Cancer’s Real Toads: Using Poetry to Understand the Experience of Cancer

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This past weekend, I had the immense good fortune to join with award-winning poet, gifted teacher, and five-time ovarian cancer patient Judy Rowe Michaels for a conversation at the American Cancer Society. I’ve taught Judy’s work in health humanities seminars and workshops around the country. The prevalent use of militaristic metaphors to describe patients’ experiences in cancer treatment (“she fought a valiant battle,” “he is a courageous survivor,” etc.), although empowering to some people, can feel very disturbing to others. Many of the objections have to do with the implication that those who are braver or more courageous survive, as though being a better warrior translates to better health outcomes. Others resist the metaphor because they object to militarism more broadly. But for me there is another concern: cancer is a disease of the self, resulting from the activity of the cells in one’s own body (unlike, say, malaria or Zika, which come through an infection). What are the implications of treating cancer like a foreign enemy, an invader, on a person’s sense of self? That’s not a question with a single, simple answer. So I’m especially interested in the dazzling array of metaphors Judy uses to describe her illness and those of her friends and family members.

I’ve posted an excerpt from the event. The camera work is very basic, but the insights are definitely more complex. The clip begins with the last part of Judy’s answer to my opening question, which was, “Your first book of poetry was published at around the same time as your first recurrence of cancer. What reflections can you share about the concurrence of these two major life events?” Click below to watch.

When It Shifts: Lessons Learned from a (Not Always Patient) Nurse Turned Patient

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For the past year and a half, I’ve been spending time with a friend on hospice. You read that right. To qualify for hospice, prevailing medical opinion must be that a person has only about six months to live. That can be a difficult prognosis for a patient, and a patient’s family and friends, to accept (even a physician may resist acknowledging that it’s time to think about end-of-life care rather than persisting in aggressive treatment). But, paradoxically, accepting that death is a reality can improve both quality and quantity of life. Numerous studies suggest that the earlier a person opts for hospice, the longer they live, and the better the experience they have in their final months. Although there are some excellent hospice facilities in communities across the US, and increasingly around the world, people on hospice may also be able to remain at home, which can further improve both quantity and quality of life.

This has proven true for my friend. Perhaps her career as a nurse allowed her to understand the implications of all the choices she made as a patient—pursuing new treatments when the lung disease she had progressed, then transitioning to hospice when it became clear those new treatments had come too late to slow her illness. She’s remained active as long as she could in whatever way she could. And she’s been able to live her life at home, surrounded by her spouse, her dog, her musical instruments and art, and as many visitors as she could put up with, whenever she wanted to see us. I’ve learned a tremendous amount from sharing this time with her and her spouse, and it’s shaped my thinking, teaching, and writing about illness and the end of life. “When It Shifts,” a short post about an incident early in her time on hospice, just appeared in Oregon Humanities magazine. You can read it here.