Health Story Type: Book

Mary Jane: A play about caregiving for a young child with serious health conditions

Mary Jane is a single mother of a young child with cerebral palsy, seizure disorder, and lung disease. The play portrays her caregiving, both in ordinary times and during a health crisis that eventually takes his life. We see her build a support network, including professional caregivers and others with whom she gives and receives support. She is a fierce advocate for her son and her descriptions of him and her life with him make clear the value of disabled lives. I plan to use this in class as an example of a caregiver narrative that shows the ways in which family members are impacted by illness and the significance of their support and advocacy. It is a powerful statement about the joy and the pain of caregiving (at one point in the play, Mary Jane states that one of the more useful things someone said to her early on was that there would be good days and bad days). It also portrays ways that our healthcare system and society often fail to support caregivers. There are scenes in which healthcare providers address Mary Jane only as “mom” and the only staff member in the hospital who addresses her by name is a chaplain.

Extreme Measures: Finding a Better Path to the End of Life.

A critical care/palliative care specialist describes hard cases at the end of life, admitting times when she has been unclear about how to advise families making difficult decisions about taking loved ones off of what she describes as the "end of life conveyor belt" of extreme measures seen in emergency rooms. From NYT book review: "Medical training fosters a heroic model of saving lives at any cost. American can-do optimism assumes all problems can and should be solved. Both doctors and patients tend to subscribe to a 'more is better' philosophy. If technology exists, surely it should be used. Physicians' fears of litigation plays a part, as do patients' fantasies of perpetual life. For too many, death remains unthinkable and unspeakable." A 25-minute documentary that features her and shows some of these kinds of conversations is available on Netflix ("Extremis," 2016)

Unmasked: Illustrating Covid-19 in Okoboji

Emily Mendenhall wrote a book, "Unmasked: Covid, community, and the case of Okoboji" based on 87 interviews with people in her hometown of Lake Okoboji, Iowa in 2020. This graphic narrative, illustrated by another native of Lake Okoboji, condenses that scientific/cultural report into full-color panels of comic strip interspersed with description and analysis. Much more compelling for most undergrads than a chapter of the book would be, it focuses on "cultural squabbles and social complexities of the first pandemic year in ...a tourist town in northwest Iowa." Could also illustrate the work of a medical anthropologist within her own community rather than in an exotic location.

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.

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).