Language: English

List of resources on Grief

In February 2024, the following request was posted to the Health Humanities listserv: “I’m in the process of compiling a reading list for people (of all ages) who are grieving /working through loss. I’d like to include: poetry anthologies, graphic or traditional memoirs, novels/short story collections, children’s picture books/youth fiction, and story-based films.” The request came from Allan Peterkin at the University of Toronto, who is compiling a list. Not surprisingly, recommendations also included works on death and dying. The attached document provides a list I compiled from this thread of the listserv.

Learning Our Son’s Language

Pediatrician Vidya Bhavani Viswanathan describes learning to communicate with her autistic son by changing her own expectations about what constitutes “communication” and how we can connect with one another without words. Her essay details the course of her son’s loss of language at age 3, and her own struggle to come to terms with this. She writes, “I am a writer, and for me his loss of verbal language was so crushing because words were my primary currency of existing. The way I understood the world was through words, and the way I explained it was through words.” Gradually, however, she learns “how to achieve connection without words” and she gives an eloquent list of examples: “Shared enjoyment of something he was interested in; cuddles and tickles that lead to a fit of giggles; city walks with moments of pause to quietly smile his dazzling smile at the crunchy leaves on the ground, the touch of a rough brick wall, the screech of tires, and the wail of an ambulance.” The story also includes information about treatments, screenings, therapies, and assistive technology, yet the emphasis is not on “fixing” her son, but on ruling out possible medical causes for his loss of language and then learning to appreciate how he communicates and how she can enter and appreciate his world.

The essay could prompt a discussion about autism acceptance, and the importance of presuming that autistic children can connect and communicate when provided with accommodations and supports. It also encourages an appreciation of autistic perspectives and challenges deficit-based stereotypes.

Silenced

Donna Lambers, a maternal/fetal medicine specialist, describes the impact on her medical practice and sense of self when her vocal cords are affected by a thyroidectomy for thyroid cancer. She loses the ability to control vocal inflection. “For instance,” she writes, “I’m unable to raise my voice at the end of a question… I can no longer tease or kid or be sarcastic with my family and friends, because it comes off sounding mean. My voice, having lost its cadences, is unpleasant to hear; and now, when giving perinatal counseling to my patients, I have no way to convey the empathy and emotion I feel for them…” She describes with great insight the many ways this has affected her interactions with patients, their families, and co-workers, as well as the frustrations she experiences.

The story could open up a discussion about the ways in which effective communication requires more than simply clear transmission of information and the taken-for-granted ways that we construct relationships and enact identities through subtle cues. It also speaks to the challenges of this particular non-visible disability.

Literature and medicine: A short course for medical students

This article describes an informal course on literature and medicine for medical students. A wide range of books, plays and poems were used with medical and non-medical themes. Students enjoyed the course and particularly welcomed the non-medical components. Several book lists are provided with an emphasis on classic authors (e.g. Jane Austen, Harper Lee, Lewis Carroll, although The Color Purple is also included in one). Description focuses on general structure and students’ reactions rather than details of discussions. The author urges informality for this kind of literary discussion and suggests even calling it a “club” rather than a “course.” Could be useful to discuss ethics of care or as a starting place for a more diverse reading list.

Bibliography of poetry collections

In this blog post, poet Celeste Lipkes recommends poems she characterizes as “confronting difficult-to-discuss medical diagnoses.” Her list includes a variety of conditions and the poems are written from a variety of perspectives, including health care providers, family members, and patients. She provides a brief synopsis of each collection, including examples.

She reviews (and provides links to purchase) the following poetry collections:

Radium Girl by Celeste Lipkes: A physician writes about her experience as a young woman with Crohn’s disease
Black Aperture by Matt Rasmussen: A man writes about his brother’s suicide
Big–Eyed Afraid by Erica Dawson: A black woman writes about her experiences of bipolar disorder and obsessive compulsive disorder
Blue Sonoma by Jane Munro: A wife writes about the progression of her husband’s Alzheimers
We Mad Climb Shaky Ladders by Pamela Spiro Wagner: A woman writes about her experience of schizophrenia
The Hemophiliac’s Motorcycle by Tom Andrews: A motocross racer writes about having hemophilia
Deluge by Leila Chatti addresses medical care for women’s reproductive health, including her treatment for heavy uterine bleeding
The Tradition by Jericho Brown: A black man writes about, among other things, his HIV diagnosis
Impossible Bottle by Claudia Emerson: poems published posthumously by a woman who died from cancer
Still Life by Jay Hopler: poems published posthumously by a man who died from prostate cancer

Depression Quest

This is a choose-your-own adventure game that aims to illustrate what having depression is like, specifically for those who have not experienced or have not been diagnosed with depression. The creators stress on the opening page that the game is not representative of everyone’s experience with depression, but is an amalgamation of different or shared experiences from people with depression. Each “level” has a different description of what the character, you, do or can do throughout the day. You then have the opportunity to choose between a few options that lead to different results or storylines. Some of the options are portrayed as beneficial while others are harmful. Some levels, specifically when the character’s depression is particularly extreme, show answers that are red-lined and unavailable to us, although we can read them. There are many different endings that appear depending on what choices you make throughout the game, meaning that everyone in the class who plays could have a different outcome or experience, which can lead to an opportunity for discussion.

The creators end the game with this message : “Instead of a tidy ending, we want to just provide a series of outlooks to take moving forward. After all, that’s all we can really do with depression – just keep moving forward. And at the end of the day it’s our outlook, and support from people just like you, that makes all the difference in the world.”

This narrative experience could be used to discuss themes such as immersive and experiential learning, including controversial learning models such as disability simulations It can also be used to discuss what we value in narratives: does the ability to act as the character immerse us more? Do we feel distanced without an author to connect with? The game play could be supplemented with other reading materials to compare and contrast different uses of narrative. When the game was released, it was also caught up in the “gamer-gate controversy” (described in a New Yorker feature article: https://www.newyorker.com/tech/annals-of-technology/zoe-quinns-depression-quest). This larger context for the game could prompt discussion about stigma associated with depression, and the appropriateness of using a “game” to educate in this way.

Users have the option to “play for free” or “pay what you want.”

Lost and Found Narrative Medicine workshop outline

This is an outline for a workshop I led for the Northwest Narrative Medicine Collaborative Community of Practice, May 26, 2020. Although this workshop occurred on zoom during the pandemic, it could be modified to address other time periods or other kinds of shared experience of loss. At the time it was offered, we gave the workshop the following description:

This pandemic has produced so many losses—some devastating, others disruptive or disappointing. This workshop will provide a space to name our losses, both large and small, and also to name and articulate what we may be finding. In the spirit of narrative medicine, we will use reading, writing, and listening to acknowledge, absorb, interpret, and act on our own and others’ stories of what we have lost and found.

The audience for the workshop included Health Care Professionals, Patients, Caregivers, Artists, Scholars, and Students (15 to 25 people) and no previous preparation was expected of them. The outline provides time-markers for a 90-minute session.

Code Switching: Gravel Against Stone

Andrew C. is a queer East Asian medical student who writes about altering his voice and pronunciation to perform what he calls “the most stereotypically masculine version of myself.” He describes having learned to do so as a child of immigrants, growing up in a suburban Georgia suburb and wanting to fit in. In the essay, he analyzes why he continues to feel the need to do so in medical school. He says he has yet to meet someone like him who is a physician, and so code-switching is required if he is to enact the implicit model of “competent physician” that is on offer to him. He writes: “I am still carrying the heavy weight of my childhood notion that to be different is to be singled out as ‘other’—and I fear that it may impact the outcome of my medical education. These vocal habits are a form of self-preservation. But when I reflect on my childhood, and my lack of exposure to queer-physician role models, I fear that I will be perpetuating the problem.”

The essay is an eloquent example of why it is so important for health care providers to come from a range of identities and social positions. It also speaks to the challenges for those providers who come from under-represented groups and why equity and inclusion require not only that we diversify, but also that we welcome and value the diversity that people bring.

The essay is brief enough to be read together in a class or workshop. It is one of several essays from a writing contest by Pulse, an online site that publishes personal narratives about health care.

Accessible Narrative Medicine digital library

The Accessible Narrative Medicine digital library includes outlines for narrative medicine workshops, as well as “third objects” (poems, short essays, stories, images, items that can be the catalyst for conversation, reflection, and writing).

The goal of the site is to encourage the practice of narrative medicine in a wide range of community settings by making available detailed workshop outlines and resources that can be adapted by community workshop facilitators for their particular audience and setting. The developers of the site believe that “narrative medicine workshops should be led by trusted members of a community. In order to create an inclusive safe space, the content and leadership of a workshop should reflect the lived experience of those attending.” The outlines and materials focus on the health narratives of BIPOC, LGBTQ+, and persons living with disability.

Registration is required to access the materials; once registered, site users can find workshops on core narrative medicine ideals, including attention, witness, and re-presentation. The library of third objects is searchable by topic and genre and includes not only written works but also images and art. The site has secured permission for use of narratives and many of the third objects include a bio for the author/artist, as well as a downloadable PDF of the object.

Health Humanities syllabus repository

The Health Humanities Consortium’s Syllabus Repository is a searchable database of syllabi from academic, professional development, and public education programs with a connection to health humanities. Not all of the syllabi are focused on health narratives, but many are, and many of the syllabi on broader health humanities-related topics include narrative readings, assignments, and other material. For example, a search for the topic, “narrative,” brought up numerous results, including courses on narrative medicine, illness stories, medicine and literature, autobiography, media, writing, social history, and gender and race.

The site is searchable by course topic, discipline, level of course, and modality. Users are also invited to share their own syllabi.