Submission Medium: video

Living with Huntington’s Disease

This is a five-minute video narrated by a 46 year old woman who acts as an in-home caregiver for her father, who has Huntington’s disease, a terminal genetic disease that children have a 50% chance of inheriting from their parents. She describes the disease as “having Alzheimer’s, Parkinson’s, and ALS all together.” Panning from the bedroom to the kitchen, the video follows this woman throughout routine moments of taking care of her dad, such as getting him out of bed and feeding him. In between clips, statistics and factual information about Huntington’s are flashed on the screen. Recently, she found out she had the gene and is beginning to get symptoms herself, but is in a clinical trial for a drug. This is a very moving, emotionally impactful video that also provides a lot of basic information about what it is like to live with Huntington’s and take care of someone who has it. It is rare to find such a nuanced blend of the emotional and the informational, as well as a perspective of a person taking care of someone with the very same disease, just at different stages. It would be useful to play for discussion material in a class about genetic diseases or family members who act as caregivers or in a discussion about how personal narrative and statistical information can be combined to communicate a message. It could also be used as an example video in an assignment for students to create narratively infused informational interview videos about a certain disease.

Meet Marleah: Testing positive for the BRCA2 gene at 25

Marleah’s health narrative comes from the CDC.gov website. She discovered she had the BRCA2 gene mutation at age 25. Marleah discusses her navigating the challenges of motherhood while considering surgery after completing her family. She chose to manage her breast cancer risk through frequent screenings and lifestyle choices rather than opting for preventive surgery. Inspired by her mother’s own battle with breast cancer and her own gene mutation discovery, she became a university professor specializing in hereditary cancer research. Her work focuses on understanding the emotional impact of genetic uncertainty and developing strategies to help individuals cope. The narrative highlights the complexity of decision-making in genetic disease management and underscores the importance of personalized approaches.

This narrative could be used to explore the intricate decisions patients face when managing a genetic disease, specifically a BRCA2 gene mutation. Marleah’s story highlights the complexity of decision-making in genetic disease management and underscores the importance of personalized approaches. As a mother, Marleah faced certain ethical dilemmas when it came to decisions about her own health. This story could also be useful for those who are forced to make similar decisions.

Christie’s Story

This four minute interview centers on Christie Arntsen, a woman who has made assisted dying plans after her likely terminal cancer diagnosis in 2013. It includes an interview with her partner, Jon, and his journey in understanding and accepting her decision for assisted suicide. She talks about her desire for a choice when she reaches the time she feels ready to die.

Although cancer is the diagnosis, the interview deals primarily with themes of assisted suicide/end of life, loss, and choice. She describes how her experience has led her towards advocacy for assisted dying; in fact the video was filmed, produced, and released by Dignity in Dying, a campaign in favor of assisted death.

The story can give insight into why someone might wish to have assisted suicide as an option and consider the option well before their health deteriorates. Christie is shown in her home, with her partner, and engaged with her family, daily activities, and activism, rather than in a clinic, hospital, or hospice setting. The story can also be discussed as a form of advocacy and persuasion.

Worlds Apart

Worlds Apart is a documentary split into four 10-15 minute sections that each focus on a different cross-cultural health experience. We delve into a Muslim man’s journey with stomach cancer when he turned down chemotherapy due to interference with daily prayer. We follow his daughter communicating with the doctor to see if there are any ways that both could be achieved. It also tells the story of a Lao woman with a hole in her heart who can receive surgery to fix it, but whose mother and grandmother are concerned that the scar will inhibit her Buddhist reincarnation. We then see a Black man waiting for a kidney transplant who searches for a nephrologist he can trust and speaks out on the disparity in waiting times for transplants between white and Black patients. Lastly, there is the story of when a Puerto Rican woman with diabetes, hypertension, asthma and depression turns to home remedies after her mother’s death, which she believes was caused by taking too much prescription medication.

This documentary showcases narratives that illuminate the limits of Western medicine and expand our ideas of how the American medical system can grow to be more inclusive, equitable, and sensitive. From the intersection between medicine and religion to institutional racism to the clash between types of medicating, Worlds Apart is an excellent resource to learn about a variety of cross-cultural healthcare topics in a person-centered manner. It would fit into more sociological classes like cultural anthropology or a world medicine class, but it could also be useful in a training course for pre-med or med students to broaden their ideas of how to individualize healthcare. It could be shown in class to prompt a discussion or assigned as homework along with a written reflection or essay assignment. View the “Facilitator’s Guide” in the Teaching Materials tab to find more specific ways to integrate it into a course. This documentary is not open access, but it can be viewed on WorldCat, which many institutions have access to.

Extremis

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.

Honoring the Stories of Illness

In this TedX presentation in Atlanta, Dr. Charon describes her practice of narrative medicine and the connections between close reading of a text and paying close attention to what her patients tell her in clinical practice. She describes how she interacts with patients and receives their stories and the ways in which this builds an affilitation that is the foundation for care. I have assigned this video as an introduction to narrative medicine (often in conjunction with one or more readings by Charon about narrative medicine). The video is 18 minutes long so it can also be shown in class to provide a shared reference for discussion.

René (Video Oficial)

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.

Wake Me up When September Ends

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.

Film can help us look disability in the eye.

This editorial (2 pages plus 4 links to videos) argues that US Americans are uncomfortable with disabilities and that filmmaking can make it easier for them to do so. The author tells his story of being misunderstood and having awkward interactions many times because of his condition (medical name not given) that he calls “whale eyes:” misalignment of his eyes so people can’t tell where he’s looking. He started by making a film his senior year in college to show his family how the world looks to him and how he works around his condition to read, write, cook, and navigate the world. From there he started making more films with disabled people – one with face blindness, another going blind, a stutterer – so they could tell their stories in similar ways. Videos linked to the article are 8-12 minutes long and all focus on “experiencing” the disability: See what the face-blind person experiences (recognizable faces are shown upside down and sure enough, you can’t identify them). Listen to the stutterer actively filtering out their fluency issues with an imaginary machine called a “Listenometer.” Useful as insight into non-medically focused stories of disabilities, or as examples for a digital storytelling activity.