Health Story Hub
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.
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.
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.
“A Lion in the House” is a 3-hour and 45-minute long documentary about childhood cancer available on Netflix. This emotional and powerful documentary follows the lives of five children battling cancer and spans over six years. The film provides an intimate and unfiltered look at the challenges faced by the young patients, their families, and even the healthcare providers caring for them. Some of the challenges addressed in this film include parenting a sick child, experiencing pain and isolation as a sick child, financial struggles as a family fighting illness, and the toll childhood illness takes on physicians’ emotional wellbeing.
Using storytelling and candid interviews, the documentary explores the complex emotions of grief, sadness, hope, and so many more that arise when confronting a life-threatening illness like cancer. Viewers will gain insight to the multi-layered challenge that cancer is, confronting topics of decisions surrounding death, pain, isolation, friendship, and financial stress. The openness of this film reveals the difficult decisions cancer brings, especially when choices have to be made for a child. This film is a very moving and real portrayal of the waves of heartbreak and hope that come with childhood cancer. This film is unique as it shares the perspectives of everyone involved in the process of treating cancer and could be used in any course interested in working with a very raw personal narrative. One example of a contrast revealed is the different challenges faced by parents, children, and physicians. Children experience the pain and loneliness, parents have to make life-changing decisions for their children, and physicians have to inform about and execute treatment plans taking into account both physical and emotional limitations. Because of the many perspectives shared, it could be a useful film for healthcare students or for any students learning about childhood illness, death and dying, and approaching medical care holistically. Additionally, it raises questions regarding consent and making medical decisions for children, and could be used in a course surrounding medical ethics.
One of the stories told in the film is the story of Tim, who was diagnosed with Hodgkins Lymphoma. Tim is a vibrant and spunky fifteen year old who’s symptoms were initially brushed off by physicians. He had a persistent cough and swollen lymph nodes, and was eventually emergently rushed to the hospital, where he got his diagnosis. Tim has a large family, living with siblings, extended family, and his mother, Marietha. In his teen years, Tim says that he enjoys all of the attention he gets because of his diagnosis, and is resistant to take his medications and listening to his mom and team of physicians. A nurse explains that by not listening, Tim is upholding his “cool” image, and eventually needs a nasogastric tube because of it. On top of his lymphoma, Tim lost his father, which his psychiatrist explains has really limited his social life. Through everything, even a period of his cancer worsening, Tim persists and remains joyful. Eventually, Tim joins a school program for students who are behind, like him, and begins a job at McDonalds. After a special trip that he and his mother take to Chicago, Tim becomes incredibly ill, once again. Resistant to the chemotherapy, his condition worsens, and he becomes worried about his death. Tim ends up dying, and the film covers his medical team and family’s grappling with his death. Tim’s story, specifically, is complex and could spark conversations on ethics, facing death as a young person, balancing being a teen and being sick, parent loss, single parenthood, as well as why his story, like others, is an important one to be told.
This short story follows a teenager straddling the precarious line between adolescence and adulthood, Mike, as he visits his grandmother in an assisted living facility. He discovers that she thinks he is her late husband when she tries desperately to get him to forgive her for a past wrong, while Mike is bewildered at such a raw view of someone he previously only thought of as a distant relation, not her own person. This would be useful for a class discussion on dementia and its effects on family members, as well as the residential care industry itself. It might be a particularly important resource for training healthcare workers to work with the elderly in these kinds of facilities to better understand nuanced experiences of both those who live there and those who visit. Courses on aging more generally could also easily incorporate this as a prompt for discussion or writing reflections.
25 minute documentary filmed in a hospital that shows patients, families and health care professionals (Dr. Jessica Zitter, pulmonary/ER specialist and palliative care, is featured. See her book Extreme Measures: Finding a Better Path to the End of Life”) dealing with end of life moments. Talking through concrete decisions of whether to take a loved one off a ventilator in the same room where the patient lies captures the difficulty of those decisions in agonizing detail. Short enough to show in a class, might be too intense for many audiences (maybe to stimulate discussion among pre-med or medical students). Could be used with a reading like “Letting go,” by Atul Gawande, but content warnings are essential. Academy Award nominee.
The author lived with parents and aunts. When father and her aunts died, she was left alone to help her mother with grief and deteriorating health. The two women struggled with the idea of assisted suicide, but eventually chose that path over further suffering. About 3 pages; workable for intermediate and advanced learners, compelling storytelling for a community group.
This 7-minute music video tells Rene’s (Residente) story of growing up “lower middle class” but secure in Puerto Rico. Describes happiness, sadness and the fragility of being a famous rapper and how he uses alcohol to deal with powerful feelings: loneliness, fear, grief – but music and baseball are more stable healing forces. The video has accurate subtitles in both Spanish and English and moves quite slowly (and can be slowed even further). Many scenes and details of Puerto Rican culture, excellent illustration of dialect features. Could be used to discuss alcoholism, addiction, grief in an upper intermediate or higher Spanish course.
The hit single “Wake Me up When September Ends” was written by Billie Joe Armstrong about his father who died from esophageal cancer when Armstrong was 10 years old. This popular song illustrates a health storyline that is likely overlooked by many casual listeners. Listening to the song, paying close attention to the words, could open discussion of grief and loss.
Spitzer describes caring at a distance for her mother and father with COVID. Her mother dies, and Spitzer (a literary scholar) explains how Virginia Woolf’s To the Lighthouse (a book that helped Woolfe come to grips with her own mother’s death) takes on new meaning as Spitzer grieves her mother. She explains, “Reading and interpretation are how I deal with overbearing emotion, and they are also the way I am working through this grief and making it mine.” She asks, “How to square the collective grief of COVID with the solitary grief of a mother’s death and a father’s illness?” and here, too, she finds insight in Woolfe’s work, Mrs. Dalloway. The essay’s concluding section describes interactions in her neighborhood and the process of grieving during social isolation.
The essay could be used to discuss different ways of dealing with grief, and some of the common and distinctive features of COVID-related grief. It also points out the value of literature and personal stories in grieving processes.