Type of Submission: Health Story

I Have Congenital Heart Disease So I Created These Comics To Show What My Life Is Like

This is a series of short comics depicting what it is like to live with congenital heart disease (CHD). There are eight multipanel topics: “Mornings,” “Transmissions,” “To do list,” “Kind of works,” “Behavior,” “Stairs,” “Too Young,” and “More than enough.” They all portray this person’s heart as an anthropomorphized character sabotaging their health in frustrating and unpredictable ways, like that of a misbehaving child. Each comic has a caption underneath giving more context than the minimal dialogue provides. The series is honest, comedic, and ultimately inspiring. The author explains how they seek to demystify CHD and debunk stigmas around young people having heart disease or getting pacemakers as well as not “looking sick.” This would fit in well into a class on graphic narratives to teach about the advocacy through illustration and how to write effective dialogue, a premed class teaching about heart disease to provide a patient perspective on the social difficulties of living with it, or a class discussing rhetoric of illness stereotyping to better understand why and how some diseases become more stigmatized than others.

Heartbeats

Dixon’s poem is written in 20 couplets of trochaic dimeter mimicking the rhythm of a heartbeat. In simple, often two-word phrases separated by periods, Dixon counters the stability of his rhythmic meter by evoking the chaotic feelings of coping with unstable health. He includes the ups and downs of swinging quickly from themes of exercise, confidence, and calm routines to sickness, bodily overwhelm, and hospitals. By weaving in the words “breathe in” and “breathe out” he highlights the conscious efforts one must take to keep breathing in the midst of conditions making it nearly impossible. This poem would go well in any health focused literature curriculum as it gives a uniquely structured and deeply evocative perspective to the challenges of living with a heart condition and managing the panic that comes along with it.

What Does It Mean to Die?

“What Does It Mean to Die?,” an article written by Rachel Aviv, chronicles the conflict between the Winkfield family and the medical staff who declared Jahi Winkfield deceased from brain-death. After a tonsil removal surgery, Jahi began coughing up blood and bleeding from her nose profusely. Her mother, Nalilah, the principal interview throughout the article, described how her daughter was not receiving proper care, which Nalilah attributes to racial discrimination. After continued neglect in the ICU, Jahi’s heart stopped, and two days later, she was declared brain-dead. She was put on a ventilator, but in California, there is a limited amount of time a hospital will allow a patient to remain in care. Due to the malpractice that had already occurred in her daughter’s care before “death,” and religious bases, Nalilah argued for her daughter’s right to remain on the ventilar and be cared for. The article offers contextual information regarding California law and insights from bioethics experts, as well as working physicians. After deciding to move to New Jersey due to their laws regarding religious-based continuation of care laws. Aviv details the controversy that emerged from this case, especially from the interest of the press and the pushback from medical professionals. Jahi continued to receive care from nurses and remained on a ventilator. Nalilah, her family, and some medical professionals believe that Jahi still is not “dead;” Jahi has physical responses, menstruates, and has a lowered heart rate at the sound of her mother’s voice. These facts prove, for some, as evidence for her right to care. However, some argue that this could be a shared delusion in the family. Regardless, the article presents many perspectives that ask the audience to understand the situation from different sides, while still staying grounded in Jahi’s story and Nalilah’s fight for care.

This story could be used in discussions of modern-day bioethics, especially in discussion of continued discrimination of BIPOC patients and families. Furthermore, it could lead to a discussion about the right to care and how we define “death” in different contexts.

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.

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?

Reclamation

This collection of short stories contains a variety of fictional narratives, some more directly related to healthcare than others, but all worth a read. In her foreword, Roxanne Gay characterizes the anthology as one in which “writers imagine what a culture of health might look like. They imagine the dire consequences for humanity if we don’t start building a true, widely accessible culture of health.”

One particular story that directly addresses health themes is a graphic narrative entitled “Reclamation” which tells the story of a Native American teenage boy struggling with absent parents, mental health issues, and self harm. One night he decides to run away from home and he encounters a horse, who he follows back to an old Native American man who is sitting in a field. The man asks him what is wrong and he shares his feelings of being lost and alone. The man shares wisdom of how he connected with his identity and heritage by spending time with horses, and starts teaching the boy how to ride a horse. The connection to the horses reveals a significant tie with the land that was taken from Native Americans, as well as a deep sense of community and freedom. We then see a time jump into the future, when the boy has become an elder advisor sharing wisdom just like the man who changed his whole life path, and quite possibly saved his life. It is an inspiring story touching on various important topics such as adolescent mental health, cultural belonging, the connections between cultural trauma and individual health, and how we can overcome obstacles in the most unexpected ways. This story would fit well into a cultural anthropology class, a mental health class, a class on Native American healthcare, or a graphic health narrative class. Because of its short length, it would work best as an in class reading to then discuss afterward. It could also work in conjunction with a more informational reading on Native American ideology or spirituality, or perhaps another story from a different cultural group on how to cope with mental health issues.

Worlds Apart

Worlds Apart is a documentary split into four 10-15 minute sections that each focus on a different cross-cultural health experience. We delve into a Muslim man’s journey with stomach cancer when he turned down chemotherapy due to interference with daily prayer. We follow his daughter communicating with the doctor to see if there are any ways that both could be achieved. It also tells the story of a Lao woman with a hole in her heart who can receive surgery to fix it, but whose mother and grandmother are concerned that the scar will inhibit her Buddhist reincarnation. We then see a Black man waiting for a kidney transplant who searches for a nephrologist he can trust and speaks out on the disparity in waiting times for transplants between white and Black patients. Lastly, there is the story of when a Puerto Rican woman with diabetes, hypertension, asthma and depression turns to home remedies after her mother’s death, which she believes was caused by taking too much prescription medication.

This documentary showcases narratives that illuminate the limits of Western medicine and expand our ideas of how the American medical system can grow to be more inclusive, equitable, and sensitive. From the intersection between medicine and religion to institutional racism to the clash between types of medicating, Worlds Apart is an excellent resource to learn about a variety of cross-cultural healthcare topics in a person-centered manner. It would fit into more sociological classes like cultural anthropology or a world medicine class, but it could also be useful in a training course for pre-med or med students to broaden their ideas of how to individualize healthcare. It could be shown in class to prompt a discussion or assigned as homework along with a written reflection or essay assignment. View the “Facilitator’s Guide” in the Teaching Materials tab to find more specific ways to integrate it into a course. This documentary is not open access, but it can be viewed on WorldCat, which many institutions have access to.

Pain hustlers

There are many film narratives that relate to opioid addiction, some documentary and others, like this one, “based on true events.” Run time is just under 2 hours and there’s little sexual or violent content (though plenty of strong language), so it could be used in many undergrad classes: health communication, media studies, pre-health professions. The focus is on a mythical small pharmaceutical company that hits a goldmine when a bright young woman figures out how to market their brand of fentanyl to greedy, unscrupulous doctors. She tries to keep the men in charge of the company within ethical and legal bounds, without success, and the epidemic of addiction follows its well-known course. At the end there is footage of real pharma executives receiving real prison sentences, reminding the audience this isn’t just a fable. Advantage of a drama over documentary – or perhaps in tandem with one – is opening questions of sympathetic portrayals and power differences based on sex and class. Available on Netflix.

The Phone Call

“The Phone Call” by Melissa Fournier is a short narrative retelling the author’s experience in giving birth to an infant on the edge of viability and, in the face of low odds of survival and extreme neurological impairments, signed a DNR. She recounts her experience as it is compared with others’ experiences of earlier stage abortions, and how public perceptions of varying kinds of difficult parental choices can be laced with bias, even when well-meaning. This would be useful in a class about reproductive rights and abortion. It is not long enough for an entire assignment, but it could be a good example to challenge abortion stereotypes and assumptions include in a lesson on the many nuanced situations in which termination of life occurs.

Cultivation Also Starts With C

“Cultivation Also Starts With C” by Jess Skyleson is a poem that uses the invasive, difficult to remove plant Japanese knotweed as a metaphor for cancer without ever saying the word, “cancer.” Skyleson switches back and forth between describing the beauty and tenderness of the plant itself with the devastation it wreaks on the environment to ultimately center the story within a doctor’s diagnosis. This poem could be used in a variety of health humanities courses to, for example, encourage students to consider alternative metaphors for thinking and speaking about cancer. It could also fit in a course that explores the intersection between human and environmental health.