Submission Medium: video

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.

Power With Anthology: Storytelling for Social Justice

From the website:

“POWER WITH is a collection of multimedia stories that uplift the lived experiences and perspectives of community members, patients, and health care workers and trainees. Specifically, POWER WITH spotlights how our experiences with oppressive (or “power over”) structures impact us individually, while also demonstrating that we are all connected through a greater shared human project. These stories inspire us to imagine what a system that embraces relationships and collective change (or “power with”) could look like.”

As of 10/25/23, some of the examples from the website were as follows:

1. “Ariah Tesema, a pre-med student, shares her journey of pursuing a career in medicine and embracing her multicultural identity. This begins with immigrating from Ethiopia to the United States as a young child and discovering that her multicultural life does not fit neatly into the boxes American society tries to place her in.”

2. “Andrea Morgan, a doctoral student at OHSU, shares her experience moving to Portland from Southern California and her dream to share her love of science with children who come from similar backgrounds.In addition to her studies, Andrea is leading a Racial Equity & Inclusion grant called Black Like Me 360, a project that allows viewers to see and hear in a first-person experience the day-to-day lives of Black Portlanders on campus and in the city in an art installation.”

3. “As a college student, Toren Ikea-Mario helped his father through a difficult cancer diagnosis and treatment. In the process, he realized that the healthcare system was broken, especially for people like his father, and was determined to be a part of the solution.”

Jeraldine’s Story: There is Hope

This is one of several stories on the Patient & Family Storytelling website. The story begins with Jeraldine’s traumatic early childhood experiences and continues to describe her alcoholism and its impact on her life. Following treatment for cancer and liver disease, she reconnects with her culture. The story could prompt discussion of intergenerational trauma and its health impacts as well as the importance of providing culturally appropriate healthcare services that address trauma and holistic care.

A Lion in the House

“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.

ShayShitsinaBag TikTok Channel

Shay Haberstroh, via TikTok, shares their story with Crohn’s disease and an ostomy bag. She talks about doing daily tasks, her love life and marriage, personal relationships, and even makes fashion and cosplay videos for people who have an ostomy bag. Her story explores chronic illness and disability, mental health, as well as what it’s like to face the idea of death as a young person. One of her viral videos shows her, shocked, with a caption that says, “realizing i’ll shit into a bag forever.” She then brings in humor and relief with the caption, “my asshole will be permanently clean.” She explores an issue that people don’t often talk about, bringing comfort to the conversation of body-differences and life saving medical devices, like an ostomy bag. She makes chronic illness an accessible and humorous topic on a platform that lots of young people use, fighting shame.

This TikTok account could be used to explore the use of different platforms for storytelling and advocacy. It could be used to discuss normalizing bodily differences, and the importance of making stories accessible and potentially, humorous. As well, healthcare professionals could benefit from watching these videos, listening to Shay’s critiques of the healthcare system, and evaluating how they could change their practice to accommodate more people and their individual experiences.

She gives great examples of how people with invisible illnesses, as well as women, are often overlooked in the healthcare system. Many of her videos are skits that she creates, acting out scenarios where she was treated poorly in healthcare or not listened to by doctors, despite the fact that she has a serious illness.

Squirmy and Grubs YouTube Channel

“Squirmy and Grubs” are a married couple who make Youtube videos, podcasts, and Instagram posts about life as an interabled couple. Shane, who has spinal muscular atrophy, and Hannah, who does not, share their daily lives, challenges, and adventures. They provide insight into their interabled relationship, educating viewers about disability awareness, acceptance, and the importance of genuine connections. Their youtube channel spreads awareness about Spinal Muscular Atrophy, but also dives into what it’s like to be together as one person who has a physical disability, and one who does not. They share videos that share their daily routine and how Hannah cares for Shane. Though, they also emphasize the ways that Shane gives care to Hannah, as well, even though he has very limited mobility. This Youtube channel is important because it shows how an interabled relationship is not really so different, and that disabled people can be in genuine and fulfilling relationships.

This youtube channel gives a first person perspective of life as an interabled couple and could be used in a classroom setting for classes focused on learning about reciprocal care, and the logistics of taking care of someone with a physical disability in a way that shows humanness, support, reciprocity, and sensitivity. They provide many great videos on how certain people with disabilities would like to be addressed, cared for, and interacted with in public and private settings, sharing a unique perspective. Specific videos to watch for learning and analytical purposes are titled, “Intimacy in Our Marriage Q & A,” “We’re Hiring a Caregiver?!” and “Our Physical Intimacy and Romance Explained.” These videos provided a candid look into their life as an interabled couple, sparking discussion on the role of media representation of disability, and how humor plays into storytelling and health narratives.

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).

My Journey with Alzheimer’s Disease: Greg

Author and advocate Greg O’Brien shares his journey as a caregiver for his parents, who both had Alzheimer’s disease, as well as someone diagnosed with Alzheimer’s himself (he is also the author of a book, On Pluto: Inside the Mind of Alzheimer’s). In this video (which also includes a transcript), he provides a detailed account of his personal experience with the condition, starting with the fear and anxiety he felt upon noticing the symptoms he initially saw in his parents and the relief experienced upon receiving a formal diagnosis, which allowed him to put a name to the enemy he was facing. As the story progresses, Greg opens up about the progressive nature of Alzheimer’s, where he experiences more frequent withdrawal, anger, and hallucinations. He emphasizes the need to live in the present moment because, with an Alzheimer’s diagnosis, there is no clear future. He discusses his strategies for fighting the disease, which include journaling daily, maintaining a disciplined lifestyle, and staying physically active.

This story can serve as a case study to understand the emotional and psychological challenges faced by individuals dealing with an Alzheimer’s diagnosis. It also addresses questions about agency and coping, and challenges the stereotype that people with dementia are just passive victims.

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.