Type of Course: Community

Narrative Medicine activity using Rearranged: An Opera Singer’s Facial Cancer and Life Transposed

Rearranged: An Opera Singer's Facial Cancer and Life Transposed is Kathleen Watt's memoir of her diagnosis and treatment for osteosarcoma. In an article in Teaching and Learning in Medicine, medical student Emmanuel Greenberg and internal medicine hospitalist Elizabeth Lahti provide a narrative medicine activity using Watt's book. Greenberg and Lahti provide a brief summary of the work, noting how Watts' short chapters narrate jher movement through the healthcare system as well as the day-to-day realities of her illness and the ways it impacts her identity and relationships. Greenberg and Lahti each reflect on their own responses to Watts' work. They note that clinicians' own life stories are part of any clinical encounter and they explore (and model) how this kind of self-reflection can improve understanding and patient care. Their article concludes by identifying a passage from Watts' book and providing brief instructions and writing prompts for a narrative medicine activity.

Patient Stories – People Managing Chronic Conditions

The Agency for Clinical Innovation is an Australian organization seeking to promote innovation and implementation of innovation in healthcare. Their site offers a range of resources including narratives, networks, and information. Under the resources tab, they offer five patient stories about managing chronic illness with the stated purpose: “These patient story videos highlight the importance of self-management and coordinated care to support people living with chronic conditions.” One of the featured videos titled “Kay’s Story,” provides an interview of Kay describing her experience and relationship with chronic illness, specifically diabetes, Graves’ Disease, and COPD. These diagnoses led to Kay developing agoraphobia, a fear of leaving one’s home or going outside. She reached out for help and support through the Aboriginal Medical Service, which provided her with steps to begin building confidence in going out, and self-managing her chronic illness and agoraphobia. The tone of the video is uplifting and positive, and she describes how this support allowed her to overcome her agoraphobia and begin practicing and advocating for self management. Brief stories useful for undergraduates, especially pre-health majors. Also community groups looking for ideas to promote wellness.

How to Find Health Narratives: TikTok

This document provides a detailed description of how to navigate the social media platform, TikTok, and how to find health narratives within the app.

Siete voces que cuentan cómo superaron sus adicciones

This article provides seven different stories from recovering drug addicts with the intention of reducing the stigma behind drug addiction. Each story provides a glimpse into the life of each person, past their addiction. They discuss how their addictions started, as well as how they have been recovering from their addictions and beginning to reclaim their lives. Intermediate level, 4 pages.

Tuve Depresión Postparto Dos Veces y Nunca Me La Diagnosticaron

Describes a woman’s experience with two bouts of undiagnosed postpartum depression. She explains her thoughts and experiences of feeling unable to take care of her children and how these were largely ignored by health professionals. Story is framed with Q&A about postpartum depression: symptoms, frequency, treatment, etc. Acessible, magazine-style 10 minute read, intermediate and native speakers; good discussion starter for a community group.

El misterio del duelo, aprenda cómo estar presente

This story describes the pain of a mother who gave up a foster daughter, Coco. A year later, she adopted a baby boy, and described this grief to the social worker, noticing that having language to describe the specific loss - "duelo por falta de derechos," - 'grief because you have no rights (to keep the child)' - helped the family move on. 10 minute read, upper intermediate level.

LitMed: Literature Arts Medicine Database

Scholars, educators, patients, students, and anyone interested in medical humanities can search this site for annotated entries that describe works of literature, fine art, visual art and performing art related to medicine. Housed at the NYU School of Medicine, the annotations are written by an editoral board of medical humanities scholars from across North America. Users of the site can search by words or phrases of their own, peruse an alphabetical index of titles, or use the extensive system of tags. It is possible to narrow a search to a particular kind of work (e.g., "All visual arts" or just photography, painting/drawing, or sculpture) or to medical humanities topics (e.g., history of medicine, medical anthropology, science and medicine). Stories by "physician" or "nurse" can also be searched. The site has over 3000 items at the time of this submission. An entry includes a summary description of the work as well as a commentary.

The ones we sent away

The author found out at age 12 that her mother had a sister who was institutionalized before age 2 with intellectual disabilities that left her unable to speak. She traces her aunt's life through various institutions, most of them deplorable, and hears her mother's grief over the separation from her only sibling. She contrasts the attitudes and treatment of such disabilities in the 1950's through the 1980's with much more open acceptance and inclusion of nonverbal persons in the 2020's, based on a photo that went viral on Twitter. Detailed memoir of three generations' relationships with the sister: the author's grandmother, her mother, and herself. Traces the evolution of attitudes toward intellectual disabilities in the 20th and 21st centuries from close relationship to the issue, noting that children born today with her aunt's condition are able to live much fuller lives because of greater inclusion in educational, social and family contexts. Includes many links to relevant sources, from memoir to scientific works. About 15 pages; also has audio version.

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.

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