Language: English

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.

My Sister’s Keeper

“My Sister’s Keeper” is a fictional story written by Jodi Picoult. It revolves around the Fitzgerald family, whose lives are profoundly affected by their daughter Kate’s long-term battle with leukemia. In a unique ethical dilemma, the parents conceive another child, Anna, specifically to serve as a compatible donor for Kate. As Anna gets older, she becomes increasingly aware of her role in her sister’s medical procedures. At a certain point, Anna decides to sue her parents for medical emancipation, seeking control over her own body. The story follows the legal battle alongside a struggling family trying to make Kate’s life as good as possible. This combination brings into light the complexities of love, sacrifice, autonomy, and the implications of using one child to save another. This novel explores these issues through the perspective of every character, including the attorney. The mother’s perspective explores grief, strength, and the need to fight for one’s child’s life no matter what. The father’s experience shows an example of someone who wants so desperately for his daughter to live, but also wants to protect the autonomy of his other daughter. The brother’s perspective tells the story of a boy who feels neglected in a family focused on a cancer diagnosis. The two sister’s go back and forth in caring for each other, and it becomes clear through this dialogue that Anna is suing her parents at her sister’s request, as her sister is ready to die. And the attorney, who suffers from epilepsy, explains his support for young Anna, despite her parent’s anger, as he knows what it’s like to not have control over his own body. The combination of perspectives explores the moral issue of bodily autonomy as deeply complex and woven with people and choices to listen to. This novel could be used in classes on medical ethics, as it raises a complex story full of moral dilemmas surrounding medical decisions and familial relationships in the face of childhood illness. It prompts conversation surrounding parental authority, blurred lines between love and autonomy, and childhood cancer.

Specifically, this story shows how cancer can affect a family, touching each person so uniquely. Kate, after a whole life of fighting, was ready to let go, whereas her mother would do anything and everything to keep her alive. Anna was happy to donate blood and organs to her sister, but sued her parents to honor her sister’s wishes, even though she lost her parents’ trust. And the attorney gives an example of when it can be important to support and listen to a child, even when their parents don’t agree. This film highlights that cancer and organ donation are not straightforward issues, and sometimes a person’s wants are contrary to the common narrative.

This book is a longer read, and it is such a complex story, which makes it difficult to break apart for shorter sections, but there is a wonderful film adaptation that could be watched in a class period. The book and film are slightly different, but all of the relevant topics and questions remain. An interesting assignment could be having different people read different perspectives and discuss what their assumptions about the other characters would be after only reading from one point of view.

The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son

“The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son” by Ian Brown is a deeply personal memoir that chronicles the author’s experiences with raising his son, Walker, who was born with a rare genetic disorder called Cardiofaciocutaneous Syndrome, or CFC. The book explores the challenges, joys, and complexities of caring for a child with special needs. He explains that his son sometimes feels like the man in the moon, and he knows there is no man there. This book chronicles his exploration of why his son, then, feels so important to him. He explains how deeply he wants to know his son’s thoughts, but this question always brings him back to what goes on in his own head. Specifically, he brings up issues of the child he thought he would have had, what a normal childhood looks like, what a normal parenthood looks like, and the grief (and joys) of having a child who is not like other people. He explores, too, how amazing and perspective-changing it can be to love someone who has unique medical needs and functionality. He feels very thankful for his life with his child, despite the challenges. Brown shares the intimate details of their life, discussing the impact of Walker’s condition on daily routines, relationships, and perspectives on parenthood. He discusses how he spends much more time with his child, and contemplates the fact that Walker cannot be independent or grow into independence like other children. He learns that love and parenthood is unconditional, and how to love someone who can’t form relationships the same ways as many people do. The narrative delves into the medical aspects of CFC, as well, spreading awareness about this disorder. As Brown grapples with the emotional and practical aspects of caring for Walker, he also reflects on the broader themes of disability, acceptance, illness, and what it means to be a father.

This memoir could be used in a class interested in discussing the implications of illness and disability for a family. It addresses the complexities at home caretaking and a rare condition, making it a good book to read for students wanting to understand home care and disability in childhood. Classes hoping to engage with first-person narratives addressing childhood illness could also use this book as an example of a caretaker’s narrative. With this, individual chapters of this book could be used to explore the questions this story raises. Brown’s writings, at any point in the story, could be discussed and used in a class discussion.

To Preserve My Health, I Had to Learn to Truly Do Nothing. It’s Harder Than It Sounds

In “To Preserve My Health, I Had to Learn to Truly Do Nothing. It’s Harder Than It Sounds,” Anastasia Chipelski shares a personal journey of navigating the challenges of chronic illness. She does not specify which chronic illness(es) she has, but explores a general experience of needing to ration energy when one’s body doesn’t work how it should. She tells about the ways she struggled before diagnosis, oftentimes just collapsing on the floor after work, and how she manages it now, like propping her arm up while brushing her teeth. She reflects on the necessity of embracing periods of rest and idleness to manage their health effectively. Chipelski explores the difficulty of societal expectations that prioritize constant productivity and the struggle of redefining success in the context of chronic illness. The article provides insight into the author’s experiences and the broader societal attitudes toward rest and wellness in the face of chronic health conditions.

With this, she explains how the world can view sick people as lazy, especially when it is an invisible illness, raising questions about how and why we see illness. She proposes patience and rest for people with chronic illnesses, beginning a conversation of how a community can also be utilized to support those with chronic illnesses.

This could be used in a course interested in exploring disability, chronic illness, and invisible illness. Students could discuss Anastasia’s story, and the importance of reading a casual, first person narrative that does not address one illness in particular, but rather, her individual experience with chronic illness in general. This could be a useful piece to read for people in healthcare or studying healthcare to understand the at home experience of someone with an invisible illness.

Sick Woman Theory

Sick Woman Theory by Johanna Hedva is an exploration of the intersection of illness, disability, and feminism. Hedva challenges traditional notions of productivity and success, advocating for a reevaluation of societal attitudes toward bodies that deviate from the norm. The theory delves into the experiences of sick and disabled individuals, highlighting the systemic issues they face, and calling for a more inclusive and compassionate understanding of chronic illness. Hedva’s work prompts a reconsideration of the value placed on health and challenges the ableist structures ingrained in society.

Specifically, Hedva provides a story of when they were unable to participate, in the streets, during the Black Lives Matter protests. Due to their many illnesses, including PTSD, anxiety, fibromyalgia, and endometriosis. Hedva describes chronic illness, writing, “I have chronic illness. For those who don’t know what chronic illness means: the word “chronic” comes from the Greek “chronos,” χρόνος, which means “time” (think of “chronology”). In certain contexts, it can mean “a lifetime.” So, a chronic illness is an illness that lasts a lifetime. In other words, it does not get better. There is no cure.” They explain the implications of chronic illness in times of resistance.

This source could be used in a course discussing disability and chronic illness, especially when focusing on intersectionality. It raises questions about who is allowed to participate in society, and how they are allowed to participate. Hedva affirms the experience of disabled bodies, advocating for resistance through rest. Courses interested in illness and politics, illness and relationships, and how disabled bodies can mobilize without moving would benefit from this reading.

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.

Family Caregiver Alliance – Caregiver Stories

The Family Caregiver Alliance’s Caregiver Stories web page is a collection of personal narratives that shed light on the diverse experiences of individuals providing care to their loved ones. These stories capture the challenges, triumphs, and emotional journeys of caregiving across different situations and relationships. From spouses caring for partners with chronic illnesses to adult children looking after aging parents, each story offers a glimpse into the unique and often complex dynamics of being a caregiver. The narratives serve not only as a source of inspiration and empathy for those who might not be caregivers but also as a valuable resource for individuals seeking connection and understanding in their own caregiving journeys. This webpage addresses all different types of illnesses and caregiving dynamics including Alzheimer’s, diabetes, cancer, autism, and so much more.

One story provided is from two parents’ perspectives of caring for their daughter with complicated type one diabetes. Britani was a once-healthy young woman who, at 22, developed type 1 diabetes. Over the years since then, her health deteriorated, leading to unexplained and debilitating symptoms. Despite numerous visits to various medical institutions, their family was left without a clear diagnosis, and Britani’s condition continues to worsen. This narrative portrays the immense challenges faced by Britani’s caregivers, her parents, who juggle the responsibilities of caring for her while trying to maintain a life outside her health concerns. The toll on both Britani and her caregivers is evident, with hospitalizations, experimental treatments, and the constant struggle against physical and emotional pain. The story also touches on the financial strain, as the caregivers cannot afford to stay home full time and must continue working. Despite the hardships, their new granddaughter brings joy to their lives, too. Throughout peritoneal dialysis insulin shots, bathing, trouble sleeping, and more, Britani remains remarkably strong, facing each day with minimal complaints despite the unimaginable pain she endures. The caregivers express a deep love and willingness to sacrifice for Britani, highlighting the profound impact of chronic illness on both the patient and those who care for them.

Another story example is that of Lisa and her husband Richard. Their life, initially filled with love, family, and what Lisa describes as “vibrant Italian passion,” took a drastic turn in 1998 when Richard’s behavior and health began to change. Despite numerous attempts to find a diagnosis and solution, it wasn’t until a CT scan revealed the extent of Richard’s condition—his brain was shrinking, and a large mass was present. The couple faced the harsh reality of Early-Onset Alzheimer’s, and began attending classes and finding support from the Family Caregiver Alliance. The challenges escalated when their home caught fire, leading to the heartbreaking decision to place Richard in a facility dedicated to Alzheimer’s care. Lisa’s account is a raw and emotional portrayal of the toll this devastating disease took on their relationship and family. Richard’s passing eight months later left a profound void, and Lisa, in coping with overwhelming grief, turned to cooking as a form of self-care. Her book, “Good Grief Cooking,” is a resource she provides for those facing similar loss. Through her story, Lisa emphasizes the importance of seeking support, sharing experiences with other caregivers, and finding ways to navigate the complexities of grief.

The stories provided in the Caregiver Stories are a great resource for those who are currently caregivers to their loved ones, either looking to

share their stories or hear stories from others. This website could be used in a classroom setting for students in healthcare looking to understand how to support and understand not just their patients, but the other people taking care of them.

Losing Each Other when Caregiving as a Family

This caregiving story explores the challenges faced by the narrator, Dan Harding, when his mother was diagnosed with multiple myeloma, a bone marrow cancer. As the youngest sibling, Dan took on the role of primary caregiver for his two-year-old brother, Ramón, who had non-verbal autism. The narrative explores the complexities of caregiving, his strained relationship with his brother Ramón, and the family dynamics during a time of grief and healing. He describes the initial difficulties in understanding and meeting Ramón’s needs, the rejection faced as the primary caregiver, and the perseverance required to maintain their bond. The story highlights the turning point when he realized the importance of immersing himself in Ramón’s world rather than forcing him into his own. The narrative also delves into the family dynamics, including the denial of Ramón’s father about his son’s condition, leading to conflicts within the family. Different coping styles among family members, clashes, and misunderstandings are discussed, along with the impact of the mother’s health condition on the family dynamics.

The story emphasizes the lack of understanding about mental health within entire families and the prioritization of physical tasks over emotional well-being. It concludes with the acknowledgment that caregiving is a complex journey with both challenging and loving moments and not all aspects can be neatly resolved or glossed over. Dan expresses a realistic perspective on the difficulties of caregiving and emotional healing within a family context.

This story could be used in multiple different settings, like for other caregivers, or in a classroom setting for students or healthcare providers hoping to better understand the experience of caregivers. It provides insight on how an entire family could be supported in the presence of multiple diagnoses, encouraging healthcare providers to help their patient’s families find mental health support as they complete their caregiving duties.