Submission Medium: written

UNCOVID–a 55-word story

This poem by Wald is composed of 55 words describing his experience as a spouse caregiver to a patient with brain cancer. The adjectives were similar to those Wald heard being used to describe the experience of COVID. In a brief afterward, he explains his intention for the poem: “I hope that this story might help readers pause, reflect, remember, and respond to suffering, both covid and ‘uncovid,’ with compassion
for others and for oneself.”

This short poem and the author’s reflection could be useful prompts for a discussion of how COVID experiences are similar to or different from other more “ordinary” or familiar experiences. There is also room here to discuss the ambiguity in poetry and the way it can allow both for multiple individual interpretations and empathy/common ground.

Dancing With Broken Bones: Portraits of Death and Dying Among Inner City Poor

Author David Moller makes the case that the dying poor are doubly invisible, shunned for being poor in an affluent society that denies death. “This book is about providing a face and offering a voice to speak on their behalf.” It includes stories about homeless and poor individuals and their experiences with end-of-life care (or lack of care). It portrays both their social isolation and suffering and their resilience and humanity. The author retells individuals’ stories and these could be excerpted.

Look Now Project: Survivor Stories

This digital humanities project includes stories and images of breast cancer survivors. Project creator Tula Goenka (a breast cancer survivor) and her collaborators seek to “break down the barriers between a survivor’s public persona and their private struggles with the disease, and to put a face on breast cancer in our local community.” The first installation in 2018 included interactive text, graphics, mirrors, and an experimental silent film accompanying 25 participants’ clothed photographic portraits and images of bare chests, and 19 who chose to remain anonymous except for their bare chest close-ups. In 2019, Goenka and her collaborators created TitBits: Breast Cancer Stories, a documentary theater performance. The multi-media website includes media coverage of Look Now and TitBits, oral histories, images of bare chests after lumpectomy or mastectomy, and resources on breast cancer.

I have used Anju’s story (“Life Happens Keep Smiling”) from this website in a Narrative Scribe Training workshop for college students, medical students, and health care professionals. After viewing the video together, we discussed what may be left out of a transcript and the importance of listening closely not only to what is said, but also how it is said, what is not said, and how our own experiences and identities shape what we hear.

Head Case: My Father, Alzheimer’s & Other Brainstorms

Miriam Wallace, Professor of English & Gender Studies at New College of Florida, recommended this book on the Health Hum listserv. Author Alexis Orgera is a poet and the daughter of someone with early onset Alzheimer’s. Said Wallace, “What’s particularly lovely is the way it blends caregiving with learning about the disease–some great accounts of time she spent drawing with her father as a way to keep him connected as the disease progressed.”

Do no harm: Stories of life, death and brain surgery.

Very human memoir from a neurosurgeon nearing retirement who tells stories from his experiences of doing (and deciding against) brain surgery. He’s expressive, emotional and even poetic about the beauty and hardship of neurosurgery: p.8 “There is a fine, surgical poetry to (the names of the parts of the brain) which, combined with the beautiful optics of a modern, counterbalanced microscope, makes (pineal gland tumor surgery) one of the most wonderful of neurosurgical operations – if all goes well, that is.” p. 14, observing his first brain surgery: “I had the strange feeling that this was what I had wanted to do all my life … it was love at first sight.” p.25: “I have not yet lost that naive enthusiasm with which I watched that first aneurysm operation 30 years ago. I feel like a medieval knight mounting his horse and setting off in pursuit of a mythical beast.” Marsh also recreates many conversations with patients, giving his own emotional backstory – “His anxiety made me more nervous as I tried to reassure him” “I wasn’t sure she was really taking seriously the risks of the operation, but in the end it was her decision.” He’s brutally honest about his own shortcomings and failures, breaking down the barrier between physicians and patients in healthy and illuminating ways.

Chapters are short and self-contained, making it easy to assign 10-12 pps for a topical reading in many kinds of courses: interpersonal communication, relationships, health communication, medical student life. The particular conditions recede in importance; what matters are the human beings, their relationships, communication and love for medicine. This is well-written enough to be a model for creative writing courses.

Being Mortal: Medicine and What Matters in the End.

A contemplation of the limits of medical care through many specific stories of decision points about when to stop treatment in favor of palliative care. Gawande has been a physician for a long time and an activist/ writer on the side of “know when to say when” – i.e. just because medical technology exists to prolong life doesn’t mean that’s the best thing to do – for almost as long. He makes convincing cases for stopping expensive treatment and “giving life to days” more often than Hail Mary passes that might bring on the 2% chance of a cure.

The book is a readily accessibe read for many audiences and could be assigned in full or excerpted. It was also the subject of a PBS documentory that could be used to supplement class use and bring the text to life.

The emperor of all maladies: A biography of cancer.

This book won the Pulitzer Prize for nonfiction in 2010. It is written by a physician who interweaves his clinical experiences as a medical oncologist with the history of cancer, including how humans came to understand that it wasn’t one disease but several and how treatments were developed as scientific understanding of human bodies progressed. For example, realizing that bodies were made up of cells and that cancers were also cells rather than viruses was a big step forward in the 1840’s.

The work is constructed as within stories within stories, including cases of patients, biographies of scientists and doctors, and Mukherjee’s own learning to become an oncologist through the inevitable trial and error of medical education. Written (almost) as engagingly as any novel, it’s still a big commitment for a student or layperson and not easy to assign in small parts. It might be most useful as a background reading to get a sense of medical history generally and a somewhat soothing answer when it seems like every third person you know is dealing with cancer (partly because we’re all living so long, partly because – all that other stuff).

Poems from Life with Juniper Village

Poems from Life with Juniper Village is a project developed in partnership between the Pennsylvania Center for the Book and Juniper Village Senior Living at Brookline. The goal is to share and celebrate the lives of Juniper residents with original, individualized poems presented by local poets. The website for the Senior Living community can be found here: https://junipercommunities.com/community/brookline-senior-living/ This 2022 site is the third year of the project, which is described here: https://crdpala.org/2019/03/20/poems-from-life-with-juniper-village-literature-links-communities/

The project illustrates the power of poetry as a form of narrative for honoring life experience and promoting well-being. It is also an illustration of a community-based project that utilizes narrative arts to celebrate community and seniors.

A last act of intimate kindness

“I had barely seen my brother in decades, but when time was short, he let me in.” In the “Modern Love” section of the NYT, a woman describes the tenderness and connection of caring for a younger brother she was mostly estranged from through his death from cancer. She’s surprised at how positive and touching it is to reconnect with him under such difficult circumstances.

The story could be used to prompt discussion of end-of-life care. The brother declines aggressive treatment and his sister is with him when he dies at home.

This narrative is also available in Spanish under the title, “Un último acto de amabilidad íntima.”

Survivor of White House Lightning Strike Embraces third chance at life

A graduate student canvassing near the White House on 8/4/22 for a nonprofit humanitarian group (International Rescue Committee – aids people in disaster zones) was one of four people hit by a lightning strike in Lafayette Park. She was the only one to survive, despite her heart stopping twice, the second time for more than 10 minutes. She ponders the meaning of being the one to survive the experience and describes the horrible pain from burns and nerve damage that she’s still suffering from. Focuses on gratitude, learned from her aunt and uncle who died of cancer years ago but were grateful to be alive up until the end.