Tag: open access

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.

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 Facilitator’s Guide

This is a thorough facilitator’s guide on how to facilitate class discussions on the cross-cultural healthcare documentary Worlds Apart (a detailed summary can be found in the Search for Stories tab). In brief, Worlds Apart is a documentary split into four 10-15 minute sections that each focus on a different cross-cultural health experience, including a Muslim man’s journey with stomach cancer, a Lao woman with a hole in her heart, a Black man waiting for a kidney transplant, and a Puerto Rican woman with diabetes, hypertension, asthma and depression. 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.

The facilitator’s guide provides background on the filmmakers and their intentions. It includes suggestions for facilitators such as setting ground rules for discussion and asking students to jot down notes during the documentary. The four-part narrative-driven documentary is summarized, and then each section is broken down in great detail, so even someone who did not watch the film could understand the exact circumstances of each family and individual being featured. After each synopsis we also receive medical background information and a variety of discussion questions specifically tailored to different issues discussed in the stories. Each section has a separate “focus” also outlined, ranging from language barriers to explanatory modules to informed consent to racial/ethnic healthcare disparities to non-adherence to medications. This guide was created “to give health care professionals an engaging experience through which to explore ideas about cross-cultural issues in health care and to learn from the actual experiences of both patients and clinicians,” but could also easily be adapted to a university classroom setting to guide student discussions. The guide does not include any assignments, but any of the issues headlining the discussion topics could work well as research essay prompts.

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.

Mercy

Through beautiful description and comparison Selzer writes about an interaction between a patient, his doctor, and his family at the end of his life. In the story, the patient is in the hospital, suffering and in pain. This piece serves as the doctor’s narrative, as he, too, suffers in deciding how to ease his patient’s pain, which can only be done by euthanasia. The doctor deliberates back and forth about the options and ultimately gives the patient what should be a fatal dose of morphine, yet still, he does not die. This piece raises questions about medical ethics, listening to patients, listening to families, and making informed decisions in healthcare.

This narrative could be used in courses regarding medical ethics, death, medicine, and narrative medicine. This piece could prompt discussion about medical ethics, who gets to make choices, and why certain choices are made in healthcare. It can be used to show the place of creative writing in medicine, as it provides a creative account of an interaction between a doctor and a patient.

Another GSW

“Another GSW” by Odeya Kagan is a short personal narrative detailing a young doctor’s encounter with a patient who had extensive injuries from a single bullet wound, and how the experience made her consider the ramifications of gun violence in America. As Kagan looks forward to her medical career, she prioritizes never becoming numb despite the frequency and normalization of gun shot wounds (GSWs). This story could prompt discussion of gun violence as a public health issue and the ways in which gun violence is ingrained into American culture. It could also be used to address the topics of physician burnout or the mental taxation of working in trauma and emergency departments. Hospital residents in particular may be able to relate to the sentiments of the author.

He was not the first dead man I X-rayed

The author had this to say about the poem: “I have X-rayed thousands of people over thirty years, but this one still come backs to me. It’s the story I tell when people ask me for ‘hospital stories,’ so it’s no surprise that I eventually wrote the story in a poem. I can still so vividly see him and me alone in that cold room.”

” Content warning : Gun violence, some graphic descriptions of bodily harm

This is a short poem written from the perspective of the author as a X-ray technologist. It describes one particular experience he had caring for a man with a gunshot wound who dies during the treatment and the poem. Provides an opportunity to talk about death and the impact experiencing death may have on healthcare providers. The brevity and personal quality of this piece leaves room for students to interpret and discuss their own thoughts and reactions.

There is a complex story in a brief poem, with lots to unpack, accessible to all audiences.