Type of Submission: Health Story

Front Lines: Poets & Physicians Document COVID-19

This project paired poets with NYC-area physicians to write poems as a way to provide space within and beyond the creative process for catharsis, shared understanding, and healing. The project started in spring of 2020 as a collaboration between two sisters–poet Elizabeth Fernandez and physician Nicole Fernandez. At the time I accessed this (8/11/22) there were 13 poems by 8 poets, written “for” 8 physicians. The poems (from June and July 2020 and October 2021) capture the experiences and emotions of these front-line health care providers during the early part of the COVID-19 pandemic.

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.

Patients as Teachers Project

The Patients as Teachers program pairs two first year medical students with a patient to learn more about how illness affects a patient’s whole life. Students visit patients in their homes or other locations and learn about the impact of illness, patient coping and resilience, and positive and negative interactions with the health care system. The website has an archive of videos students have created about patient experience. For example, a video from 2020 interviews Jason Barup about his experience with clear cell renal carcinoma and also includes an interview with psychologist Michael Hayes, who worked with Barup through his diagnosis and treatment. The storyline puts Barup’s illness experience in the broader context of his identify as a runner. The videos could be used to provide examples of patient narratives (they cover a range of medical conditions). They can also prompt reflection on patient-provider communication and interactions with health care systems.

Patient & Family Storytelling: Real People. Real Experiences. Real Impact.

This Alberta Health Services website lists 107 videos from patients and their families. There is a brief description of each video (e.g., the health condition, who tells the story, what larger issue or point the story illustrates). It is possible to search the collection (e.g., for stories related to “cancer”). Some examples of health narratives on this website include:

Rose’s Story: Joy and Grief, a look into how healthcare providers can help us navigate tragedy and foster healing. Rose explores the impact and experience of the stillbirth of her son and daughter. (The website includes a content warning.)

B’s Story: Learning to B myself, a story about the challenges of occupational stress, gender identity, mental health, and transgender advocacy from a rural context.

Jeraldine’s Story: There is Hope, a story of the experiences of an Indigenous woman who experiences the ramifications of intergenerational trauma. This story advocated for Canada to provide culturally appropriate healthcare to indigenous populations.

Although produced by a health care system, these videos give more voice to patients and family members than is often the case with these kinds of collections. They are well-produced and many address the experiences of historically under-served and marginalized populations.

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.

Penn State Collection of Graphic Medicine Narratives

Organized by each year the class has been taught, this is collection of graphic narratives illustrates issues medical students face with details of med school life: imposter syndrome, harsh criticism, feeling insecure vs thinking they can save a patient’s life if they go with their instincts, etc. Amazing range of writing and drawing styles, very candid, some quite powerful. Some use medical terminology beyond interest or understanding of lay reader.

Cigarettes

Juice WRLD (Jarad Higgins) was a rapper who was open about his struggles with addiction, depression and anxiety. He died of a drug overdose in 2019. Many of his music videos can be read as illness narratives. This one has an ultimately upbeat message, as the protagonist goes to AA and gets sober. It begins with a “Text this number for confidential help” message onscreen. This could work in any music/popular media class to talk about health narratives or could be part of an assignment to build a play list around a topic with annotations.