Health Story Type: Book

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.

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.

The Body Keeps the Score

“The Body Keeps the Score” is a book written by Dr. Bessel van der Kolk, a psychiatrist and trauma expert. The book explores the impact of trauma on the body and the ways in which the body stores and remembers traumatic experiences. Dr. van der Kolk emphasizes the interconnectedness of the mind and body in the experience of trauma, challenging traditional views that focus solely on psychological aspects. The book delves into various therapeutic approaches and modalities that can help individuals recover from trauma, including neurofeedback, yoga, and EMDR (Eye Movement Desensitization and Reprocessing). It also discusses the author’s own experiences working with trauma survivors and presents case studies, specifically with children that illustrate the challenges and successes in treating trauma. This book could be used to explore from both a scientific and narrative perspective how trauma presents itself and actually layers the body. It could aid in discussions based around how one heals from trauma and how to give trauma informed care.

Never Let Me Go

In Ishiguro’s dystopian novel, Never Let Me Go, health-care becomes fueled by state-sanctioned human cloning designed to farm organs. The clones live separate from regular society, unknowing of their status as clones until they must begin donations as young adults. The novel is told through the perspective of Kathy, a clone who escaped the donation process, as she recounts her relationships and experiences as a student and carer. For the first part of the novel, the reader does not know Kathy or her classmates are clones until it is revealed to them. If used in a class, it would be best not to reveal this twist.

The novel raises ethical questions about the human experience and the medical system. While fictional and dystopic, the themes of morality, exploitation, and autonomy in medical contexts make this piece a basis for discussions of principle issues in bioethics.

Never Let Me Go uses the first person perspective to put the reader into the shoes of a “clone,” not of someone receiving their organs. This use of perspective is worth noting and could lead to discussions of perspective and identity in healthcare and health narratives. Who do we align ourselves with? How do we relate to characters, or more broadly, to people experiencing circumstances different from our own?

Hyperbole and a Half: Unfortunate situations, flawed coping mechanisms, mayhem, and other things that happened.

This is a graphic memoir written by a comedic blogger, divided into chapters that retell various life experiences in words and digital drawings, ranging from sibling relationships to unruly dogs to childhood memories to unconventional methods of dealing with depression. Brosh has experienced depression throughout her life, and this is a topic she digs into candidly in her book.

Selected chapters of this book could be used as brief, accessible readings in a class on mental illness or in a training for health care providers. A follow up assignment could invite students to make graphic narratives of their own and could invite discussion of how humor can be used to make difficult topics less taboo.

The Immortal Life of Henrietta Lacks

This book is a biography of Henrietta Lack, a black woman who died of cervical cancer in 1951. Before her death, Henrietta Lacks’ cells were harvested from her cervical tumor without her knowledge or consent. The HeLa cell line originates from these cancerous cervical cells, and it is the cell line most used for any study on human cells. Neither Henrietta nor her family were consulted nor informed about the mass distribution and use of her cells until decades later when her cells were already the cause of many medical discoveries and breakthroughs. This book was the first to paint the whole picture of the human behind the most famous cell line.

This book might be used in courses on research and medical ethics, on health (in)equities, or on narrative medicine. For example, it sheds light on all of the factors, both medical and societal, that led to a lack of adequate or ethical care. Her story shows the importance of health stories for humanizing medicine. It allows for reflection on the history of healthcare as it relates to women and people of color (specifically black people and black women).

Love in the Time of Cholera

Originally written in Spanish, this is a novel about a relationship over the course of a lifetime, where due to a father’s taboo, the lovers must be apart. It characterizes lovesickness and heartache as a literal sickness. It also destigmatizes love and passion in old age by showing the two protagonists finally getting to be together fifty years after they were torn apart. However, it does point to the limitations of societal expectations because in order to be together the lovers must stay on a ship pretending to be in cholera quarantine. This could be useful for teaching about elderly relationships and the stigmas around sex and intimacy in old age, as well as how real health crises, like cholera, permeate deeply into a society. One could draw parallels between cholera and COVID and the social impacts of epidemics and pandemics.