Submission Medium: written

Ashley’s Story

Ashley James has successfully managed type 2 diabetes for 12 years, but her journey started with denial. At 31, she struggled to accept her diagnosis, refusing to take prescribed medication. A wake-up call came when she spoke to a colleague, a nephrologist, who emphasized the potential complications of unmanaged diabetes. Realizing the need for a change, Ashley began working with her primary care doctor. And despite initial challenges, she made small adjustments to her lifestyle, incorporating better nutrition, physical activity, and medication adherence. These changes resulted in weight loss, but also increased her energy, and improved blood sugar levels.

Facing limited access to diabetes self-management education and support (DSMES), Ashley recognized a gap in her community and became a diabetes care and education specialist (DCES). She took her experiences to local churches, leveraging the influence of pastors to address diabetes stigma and misconceptions. Through sharing her story, Ashley helped others at her church accept their diagnoses and understand the benefits of diabetes education.

Ashley’s story emphasizes the importance of accepting the diagnosis early to take proactive steps in managing diabetes. She believes in recognizing individuals beyond their diseases and advocates for listening to their stories to provide meaningful support. Ashley’s journey serves as a push for those struggling with denial.

Ashley’s story could be used in healthcare class settings to spark discussion about the role of narratives and community in managing diabetes. As well, this narrative would be great for a public health class, or pre-ed students, to gain insight on how someone experiences denial when diagnosed, and how they get past that.

Even Superheroes Get Diabetes

This book can be purchased at book stores or online. Alternatively, there is a free reading of the book on youtube at this link: https://www.youtube.com/watch?v=w5uKTvYN6bw

“Even Superheroes Get Diabetes” by Sue Houle is a unique comic book that tackles the topic of diabetes in a creative and relatable way, especially for young readers. The narrative is presented in a comic book format, adding an engaging and visually appealing element to the story.

The protagonist of the book is a young boy who discovers that even superheroes can have diabetes. The story unfolds as the boy learns to navigate life with this condition, and the narrative is paired with many superhero-themed elements, making it both entertaining and informative.

The book not only addresses the practical aspects of managing diabetes, such as monitoring blood sugar levels and taking insulin, but also goes into the emotional and social aspects of living with a chronic condition. It explores the life of the young superhero, such as explaining his condition to friends, dealing with potential misconceptions, and finding the courage to embrace his unique identity. Throughout the story, the author incorporates valuable information about diabetes management, making it an educational resource for both children and their parents. The use of superheroes as characters helps destigmatize diabetes, showing that anyone, regardless of their abilities or strengths, can be affected by the condition.

Overall, “Even Superheroes Get Diabetes” is both a heartwarming and empowering book. The creative storytelling approach, coupled with vibrant illustrations, makes it an excellent tool for raising awareness and fostering understanding about diabetes among children and the broader community.

This comic could be used in classroom settings for pre-med and public health students to learn about the impacts of creative narratives, especially when interacting with children. This provides a unique type of narrative that can be analyzed visually alongside a discussion of the content. It can raise questions about effective forms of communication with children and their parents and emphasizes the role of art in narrative medicine.

When Breath Becomes Air

“When Breath Becomes Air” is a memoir by Paul Kalanithi, a neurosurgeon who was diagnosed with stage IV lung cancer at the age of 36. The book is a reflection on life, death, and the intersection of medicine and humanity.

The narrative unfolds in two parts. In the first part, Kalanithi shares his journey from being a promising neurosurgeon and scientist to grappling with the reality of his own mortality. He goes into his passion for literature and philosophy, and how these interests shape his perspective on life and death. The second part of the book is written by Kalanithi’s wife, Lucy Kalanithi, after his death. It provides insight into the last months of his life, his battle with cancer, and the emotional and existential challenges faced by both Paul and his loved ones. Throughout the memoir, Kalanithi explores questions about the meaning of life and the purpose of medicine. He provides the experiences of both the doctor and the patient, offering a unique and intimate perspective on illness and the medical profession.

“When Breath Becomes Air” is celebrated for its uniqueness, as it not only captures the intellectual depth of Kalanithi but also the emotional journey of a man coming to terms with his own death. The book has resonated with readers worldwide, sparking conversations about the fragility of life and the importance of finding meaning in the face of inevitable death.

This book could be used in a class that discusses topics of aging, death, and dying or for any class interested in hearing about illness from a provider’s perspective. Students could discuss the differences between a physician and patient narrative, as well as what happens when doctors get sick. It raises questions of medical ethics, as well, as Kalanithi reflects on what he wants in his own death.

Dying: A Memoir

Cory Taylor’s memoir, “Dying: A Memoir,” confronts the profound questions surrounding death and the pursuit of a dignified end. At the age of 60, Taylor was diagnosed with incurable cancer, propelling her into a realm where death was an uncomfortable, often ignored reality. Having witnessed her parents’ agonizing decline into dementia and death in nursing homes, Taylor was determined to approach her own mortality differently. Fueled by a desire for a better death, she started on a journey that led her to become an ambassador for the dying. In a society that often shies away from discussing death, Taylor explored the silence surrounding it, describing it as a “monstrous silence” that leaves individuals facing death feeling isolated.

The memoir raises important questions about the medical profession’s reluctance to discuss death, the prioritization of expensive cancer treatments over palliative care research, and the influence of religious groups in the debate on assisted dying. Taylor herself contemplated assisted dying, even ordering a euthanasia drug, but struggled with the decision due to the absence of a supportive legal framework and concerns about the impact on her loved ones.What sets Taylor’s memoir apart is her lack of self-righteousness. She doesn’t embark on a spiritual journey or offer easy answers. Instead, she explores the complexities within her own family, highlighting irreconcilable rifts and exploring the history that shaped her.

The narrative weaves together scenes from Taylor’s life, from her childhood experiences in Fiji to her first recognition of desire and mortality. Throughout, she emphasizes that life’s messiness is its own reward, challenging the notion of a neat, happy ending. Cory Taylor died shortly after the book’s publication, leaving behind a legacy that reflects her quest for a good death. While the book doesn’t provide a definitive conclusion, Taylor’s peaceful death surrounded by family suggests that, in some ways, her desire for a dignified end was fulfilled.

This story could be used as an example of a patient’s personal narrative of dying in any class that addresses issues of aging and dying. This book could serve as a strong and vulnerable patient narrative for a course in healthcare that wants to address narrative medicine, raising questions of what makes a good story, what doesn’t get talked about, and how many factors and narratives shape the reality of death.

Why I Became a Speech-Language Pathologist: My SLP Story

Lisette Edgar, a professional speech language pathologist (SLP), recounts her journey discovering the field through her son’s speech challenges and ultimately deciding to pursue a career as an SLP. She details her son’s pronunciation difficulties that were first noticed when he was three, and how, in getting him assistance, she was catapulted into the unfamiliar world of speech therapy. Due to a shortage of speech therapists at her son’s school, Edgar ended up doing a lot of lessons and practice at home. When she began working as a substitute teacher at her son’s school, she got even more exposure to the work speech therapists do, and she decided to go to graduate school to become an SLP. On Edgar’s blog, there are many resources and lessons that focus on subjects from autism to apraxia to stuttering. This post would be useful in a pre-professional medical class to inform students about the different pathways they can take with their medical careers aside from being physicians. It would also fit very well into a graduate SLP class as an introduction to how various people get involved with the field, and how signs of speech difficulties show up—and can often be overlooked—in young children. One assignment that could be created off of this is to have students browse the resources and then create an exercise of their own that could be used to help children with a speech condition.

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.

Laury’s story: ‘Mum became utterly lost in the fog of her own mind.’

Laury reflects on her experience as a caregiver for her mother, who passed away from Alzheimer’s disease. She recounts the journey through various stages of the condition, describing the initial use of memory aids, the gradual loss of her mother’s cognitive and physical abilities, and the difficult decision to place her in residential care. Laury’s story also outlines the challenges of saying goodbye to a loved one at the end of a long disease.

This story can be used for a class interested in the social, emotional, and financial impact of long-term disease on both the patient and caregivers/loved ones. This story could also be used to look at death and dying through a personal and empathetic narrative which can lead to discussions about stigma and fears that surround death, especially for those with chronic or terminal illnesses.

I Walked off Alone to get my Tubes Tied

In this informative essay, the author retells the stories of Gopli Gameti and Parvati Meghwal, two women in rural Udaipur from the Gameti community. Women in this community are often left behind as their husbands migrate for work. This story highlights the challenges faced by women in these rural areas in making health and life decisions independently.For example, women must seek healthcare (which can often be far away, expensive, or logistically difficult), navigate maternal choices like tubal ligation, and advocate for their own reproductive care on their own. Gopli also describes the sense of empowerment and liberation that comes with taking control of one’s own health when possible. This narrative can be incorporated into a class focused on gender studies, public health, or sociology. It provides real-life examples of how women in rural settings navigate healthcare decisions and family planning, specifically in the context of male migration. It can facilitate discussions on the intersectionality of gender, migration, and health, allowing students to analyze the socio-cultural factors influencing women’s choices.

Tamara: an Abortion Story

Tamara shares her story of seeking an abortion in the state of California shortly after finishing graduate school and starting a new job. Despite being a former pregnancy options counselor and health educator, she faced challenges in accessing abortion care within the university system and encountered stigmatization from protesters outside the clinic as well as from fellow patients. She also experienced complications from the procedure. Her narrative emphasizes the importance of supportive environments during the abortion process as well as the emotional and financial aspects of the experience. She also addresses the impact of restrictive abortion laws, such as those seen in Texas, on individuals seeking timely and safe procedures. In courses focused on reproductive health, women’s studies, or public health, Tamara’s story provides a firsthand account of the difficulties individuals may encounter in accessing abortion care, including navigating legal restrictions and facing societal stigma.