Language: English

States of Grace

The film States of Grace intimately captures the profound transformation of a revered physician and her family in the wake of a life-changing accident. Dr. Grace Dammann, a pioneering AIDS specialist and devout Buddhist who was honored by the Dalai Lama, was driving across the Golden Gate Bridge on her routine commute when another driver crashed head on into her car. After seven weeks in a coma and a dozen surgeries, Grace miraculously awoke with her cognitive abilities intact, though her body was left shattered. States of Grace follows her return home to where her partner Nancy “Fu” Schroeder becomes Grace’s primary caregiver, while also caring for their teenage daughter Sabrina, who was born with cerebral palsy. Grace, meanwhile, must reconcile her joy at still being alive with the frustration of being so dependent on others. Through verité footage and interviews with doctors, family, and friends, the film paints an inspiring portrait of devotion and trust as it delicately documents one woman’s fight to reinvent herself.

Through Grace and Fu’s story, this film explores many aspects of health studies, including the shift from provider to patient, role redefinition when a family member becomes a primary caregiver, the role that spirituality can play in healing, parenthood, and more.

Aliceheimer’s: Alzheimer’s Through the Looking Glass

This graphic memoir captures the author’s journey with her mother, Alice, who is diagnosed with dementia. Through a creative blend of writing, visual art, and comics, Walrath weaves elements from Lewis Carroll’s Alice’s Adventures in Wonderland throughout the text to explore the transformative power of storytelling in navigating the challenges of mental illness, loss, and social stigma. The memoir offers a unique perspective on aging and caregiving, emphasizing the healing potential of graphic narratives by speaking to how visual mediums can communicate more than, or differently from, written text. Collaged illustrations, made in part from Carroll’s text itself, are accompanied by a textual vignette. The combination of text and art results in a cohesive narrative that would lack the same depth and detail if considered in isolation. Graphic medicine, Walrath writes, “lets us better understand those who are hurting, feel their stories, and redraw and renegotiate those social boundaries.” Aliceheimer’s provides a way to introduce and educate people about Alzheimer’s as a medical condition, while highlighting the humanity involved in dealing with it as a family.

This novel could be used in classes regarding narrative medicine, graphic medicine, and/or caregiving experiences. It invites discussions on the role of storytelling in reshaping medical narratives, the impact of stigma on health, and the potential for creative expression in coping with complex health challenges. With Walrath’s background in Medical Anthropology, this book could also be used to ask how researchers personally connect to their work.

Caring for a Parent in my Home

This article describes Beth’s caregiving story as she cares for her elderly mother post-stroke. Beth’s journey captures the complexities, sacrifices, and resilience inherent in caregiving roles. The narrative explores familial dynamics, emotional strains, and the importance of planning and seeking external support. Beth’s evolving experience offers valuable lessons for educators seeking to illustrate the intersection of health, family dynamics, and personal well-being in caregiving narratives. Caregiver.com aims to provide community and support for nontraditional caregivers, such as children caring for their aging parents. As such, the story emphasizes the significance of communication, planning, and self-care.

Acupuncture: Susan’s Story – University Hospitals

This minute and a half long youtube video from University Hospitals Connor Integrative Health Network tells Susan’s story, who had severe back pain from a bulging disc that severely limited her mobility. After her regular physical therapy only provided limited relief, she decided to seek out a more holistic treatment and use acupuncture along with her regular treatment. Susan, and her naturopath Lina Sbrocco, explain how acupuncture has allowed Susan to return to her daily life activities by greatly decreasing her pain. The video shows what the treatment looks like in order to demystify acupuncture, but also frames it as a last resort, and complementary to biomedicine rather than as an alternative.

Using this video in class provides a practical example of a short narrative that could stimulate discussions on complementary and alternative medicine and holistic health, as well as how medical facilities advertise using patient testimonials. The video advertises acupuncture as something that University Hospitals offers, and uses Susan’s success story to encourage patients to use their medical services.

Music Therapy in Larry’s Life

This five minute video from AMTA music therapy shares Larry’s story, a musician, teacher, father, and husband who lost many functions following a seizure. The video contains an interview with his wife, and board certified music therapist Moreen Bosch, to show how music has helped Larry regain his self-confidence and joy in music. This video could be used to examine the role of arts, specifically music therapy, in the healing process.

Living with HIV: Six Very Different Stories

This article from The Guardian features six diverse narratives of individuals living with HIV, highlighting the evolution of the HIV/AIDS experience over the past 30 years in Britain. For example, Jonathan, diagnosed during the early epidemic in the 1980s, reflects on living with HIV for over half of his life, explaining how he managed without medication until 1996 and has come to embrace life with HIV through activism. Another example is Jo, diagnosed at 60, who discusses how she navigated the shock of her diagnosis and the perceptions associated with being an older woman with HIV. She’s open about her diagnosis because she wants to change perceptions about people living with HIV.

This article offers students an opportunity to reflect on diverse experiences with the same illness, and brings up topics such as stigma, activism, and media representation of illness and how these change through time.

Taking Turns

Taking Turns is a graphic novel that explores HIV/AIDS Care Unit 371 at the Illinois Masonic Medical Center in Chicago during the peak of the AIDS epidemic. Through archival records, oral histories, and MK Czerwiec’s first-hand experiences as a nurse on the ward, the novel sheds light on the challenges and resilience of the community during this critical period. With simple illustrations and a practical four-panel format, “Taking Turns” delivers a direct and accessible narrative, offering readers an opportunity to not only absorb the history easily, but prompting empathetic reflection for each member of the community – patients, families, and medical staff. This novel could provoke discussions about caregiver narratives, and the efficacy of graphic novels in communicating narrative.

HIV, Mon Amour: Poems by Tory Dent

“HIV, Mon Amour,” a collection of poems by Tory Dent, transcends conventional narratives surrounding HIV/AIDS. Dent, who was HIV positive, employs lyric poetry to create a deeply personal and bracingly honest narrative, resisting the dominant journalistic and political expressions associated with the epidemic. Through her unique approach, Dent navigates the stigmas attached to HIV/AIDS, rejecting both the stigmatizing and activist-driven narratives. Her use of language, range of feeling, and occasional self-doubt reveal a nuanced exploration of her experience. This collection serves as a powerful testament to the complexity of individual lives affected by HIV/AIDS, challenging pre-existing socio-political frameworks and fostering a deeper understanding of the human experience behind the statistics and red ribbons. Dent’s poetry could be used to analyze how illness narratives are far from one-dimensional – the poetry showcases the often contradictory feelings wrapped up in illness by encompassing pain and joy, isolation and community, the private and the public. “HIV, Mon Amour” could also be used to examine poetry as a narrative form.

No One Left to Save

Rachel Berlin recounts her experiences as a third year medical student on an internal medicine clerkship and the relationship she had with the senior resident who supervised her work, Hassan. The story touches on several themes, including the process of developing competence in diagnosis through practice with patients and interaction with a mentor, and the emotional work of learning to treat patients in a system in which you aren’t always around to learn the outcome of care and in which you don’t always have time to respond as you might wish to patients who face serious diagnoses or who are dying. An element of the story also concerns Hassan’s status as an immigrant far away from his family in an unnamed war-torn country, repeating his residency in order to qualify for a US medical license.

In my course on the role of narrative in medical practice, I teach a week on how medical students are socialized to become physicians and the role of storytelling in medical practice and socialization to medical practice. This brief personal story would be a useful companion piece to some of the anthropological research I teach.

Health Stories Project

Health Stories Project has an online presence in multiple platforms, including this website as well as Youtube, Facebook, and Twitter. Patients are invited to tell their stories in response to a variety of prompts. The site includes a large, searchable collection of stories about a wide variety of conditions and experiences. The stated purpose of the site is “to give people opportunities to share their personal health experiences and to learn from the experiences of others.” Digging into the privacy policies reveals that information provided can be used for targeted advertising and the site is owned by HPG, LLC, which is described on an assets data management site as “a provider of patient engagement services to pharmaceutical and biotechnology businesses through managed patient and caregiver networks in a variety of therapeutic areas.”

The site is a source of stories, but may be more important for prompting discussion about informed consent and how patient stories are used, as well as how to weigh the benefits of being able to share one’s story (and read stories by others) with the other uses to which these stories may be put. The site states openly at the outset that they are not a non-profit and it doesn’t hide these multiple purposes (nor is it difficult to track down the connection to HPG, LLC); however, they don’t lead with this, either.