Health Story Type: Video Recording

Living with Alzheimer’s Disease: Barry’s story

“Barry was in his early sixties when he was diagnosed with Alzheimer’s disease. He and his husband, Randy, had recently moved to an idyllic new town on Cape Cod, excited to start a new chapter in their lives. The diagnosis meant that he not only had to give up his job but also his plans for the future. Worried about the loss of awareness of himself and his life that would ultimately come, Barry prepared his will and visited assisted living facilities. Making these decisions now gives him a sense of comfort that he is still in control of his own life.”

This story is pulled from Biogen, a Massachusetts-based biotech company, in their efforts to shed light on individual patient stories. This link takes you to the Biogen website, where you will find both the video interview and transcript. Biogen is not mentioned in this story but could be an interesting discussion point for a class focused on capitalist healthcare in the US. This story illustrates the importance of personal agency and control in a patient's journey with Alzheimer's disease and could be helpful in a class focused on narrative healthcare and patient autonomy. Discussions could include medical advertisements, medical autonomy at different stages of life, stereotypic images of who is an Alzheimer patient or caregiver, and privileges that come with having medical autonomy. The video is also interesting as a multi-layered text (for example, if one viewed only the video, it isn't at all apparent that this is a story about illness, a feature that can prompt discussion about how this contributes to a message about early diagnosis and patient autonomy).

Let’s Talk About Trauma – A Wound That Never Fully Heals

In this Tedx Talk, High school senior Matilde Antunes shares both the psychology and biology between trauma. Matilde shares her own personal narrative of growing up in a broken home. At five years old her parents divided and forced her siblings to pick sides as well as years of hatred and fights between the parents. Such experiences led her to develop depression as well as trauma that prevailed and stayed with her throughout her life. Matilde refers to this experience and trauma in general as a “wound that never fully heals.” She then discusses the importance of breaking the stigma surrounding trauma and mental health generally through the power of vulnerability and connectivity. This video could be utilized within a classroom setting to explore the psychology behind childhood trauma as well as a way to expand on the causes of trauma.

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.

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.

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.

Difficult Choices

In this 2-minute video from the Youtube channel Story Center, a mother describes the discrimination that she faced for expressing breast milk at work. The narrator draws attention to the discrimination she and many other people who breastfeed faced, and the effect that her decision to breastfeed had on her career--although she successfully pursued a complaint that resulted in compensation and promises to change policy, she ultimately lost her job. "Difficult Choices" provides a succinct example of workplace discrimination against mothers, the legal remedies available, and their limitations. It could prompt discussion about the use of personal stories for advocacy.

A Strange Relativity: Altered Time for Surgeon-Turned-Patient

This is an 8 minute video made by Stanford neurosurgen and author Paul Kalanithi before his death. He reflects on the experience of time--as a physician, seeing patients and monitoring time and now, as a person with cancer and the parent of a baby. The video could be used in a course in which Kalanthi's book is assigned, to give students an opportunity to hear his reflections in his own voice and to see images of him with his family. It is also an example of the larger issue of what physicians notice about medical practice when they become a patient themselves.

Patient & Family Storytelling: Real People. Real Experiences. Real Impact.

This Alberta Health Services website lists 107 videos from patients and their families. There is a brief description of each video (e.g., the health condition, who tells the story, what larger issue or point the story illustrates). It is possible to search the collection (e.g., for stories related to "cancer"). Some examples of health narratives on this website include: Rose’s Story: Joy and Grief, a look into how healthcare providers can help us navigate tragedy and foster healing. Rose explores the impact and experience of the stillbirth of her son and daughter. (The website includes a content warning.) B’s Story: Learning to B myself, a story about the challenges of occupational stress, gender identity, mental health, and transgender advocacy from a rural context. Jeraldine’s Story: There is Hope, a story of the experiences of an Indigenous woman who experiences the ramifications of intergenerational trauma. This story advocated for Canada to provide culturally appropriate healthcare to indigenous populations. Although produced by a health care system, these videos give more voice to patients and family members than is often the case with these kinds of collections. They are well-produced and many address the experiences of historically under-served and marginalized populations.

Patients as Teachers Project

The Patients as Teachers program pairs two first year medical students with a patient to learn more about how illness affects a patient's whole life. Students visit patients in their homes or other locations and learn about the impact of illness, patient coping and resilience, and positive and negative interactions with the health care system. The website has an archive of videos students have created about patient experience. For example, a video from 2020 interviews Jason Barup about his experience with clear cell renal carcinoma and also includes an interview with psychologist Michael Hayes, who worked with Barup through his diagnosis and treatment. The storyline puts Barup's illness experience in the broader context of his identify as a runner. The videos could be used to provide examples of patient narratives (they cover a range of medical conditions). They can also prompt reflection on patient-provider communication and interactions with health care systems.