Language: English

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.”

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.

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.

Aftershock

This documentary tells the stories of two Black women who died during or after childbirth, through interviews with their family members. The film examines the higher rates of infant mortality in the US, and especially for Black women, who are 3 to 4 times more likely to die from childbirth-related reasons than White women. The film shows how family members became activists for maternal health care. The award-winning film premiered at Sundance in 2022 and is (at the time of this writing) available on Hulu. It could be used to show how narratives can bring statistics to life, as well as the power of narrative for social change.

As a physician, why write?

This is the first post in a new blog on U Mass Med School Medical Humanities Lab, 2019. It is an articulation of why all physicians are storytellers and why most would do well to write them down. This could be beneficial for medical students to reflect upon in order to show the importance of health narratives to new physicians.

The Hidden Dying of Doctors: What the Humanities Can Teach Medicine and Why We All Need Medicine to Learn It

This review of Kalanithi’s “When breath becomes air” focuses most on the opening story of a young colleague who took his own life, the problem of medical student and physician suicide/ depression/burnout, and how humanities education could alleviate the suffering of doctors by connecting them with the human side of medicine, their own and that of patients. This is very useful as a first-week reading in a Foundations of Health Humanities course or as a reference for a talk to aspiring med students

It’s the ‘life’ in end-of-life that matters

Prompted by Atul Gawande’s New Yorker essay (“Letting Go,” which addresses similar themes as his book, Being Mortal), the author reflects on two experiences he had as a resident in the NICU, one in which all possible medical treatment was pursued inappropriately and another in which extra-ordinary measures were not applied so that a family could spend a final day with a fatally ill newborn. The author blames the broader medical system, and says his frustrations with that system led him to his current occupation as a health services researcher.

In contrast to end-of-life stories that involve elderly patients or terminally ill adults, this blog post provides vivid examples of NICU treatment decision-making.

Letting go: What should medicine do when it can’t save your life?

Tells several of the wrenching stories from his book (Being Mortal), making points about medicine’s reluctance to stop treatment and acknowledge the patient is dying, even when the chance of improvement is slim to none. “Modern medicine is good at staving off death with aggressive interventions–and bad at knowing when to focus, instead, on improving the days that terminal patients have left.” 13 pps; suitable for undergrads, professional students, maybe medical students; describes hospice treatments and misconceptions about hospice.

Speaking of Addiction

Dr. Meaghan Ruddy speaks on the importance of the language that health care providers choose to talk about drug addicts, specifically opioid addicts. She shares her story of when she critiqued the label “drug-seekers” in an emergency department that had many such cases. Dr. Ruddy then calls for a focus on destigmatization for drug addiction in future generations of medical professionals. Relevant to pre-med, medical students.