Health Story Type: Brief story

“Final del juego” por Julio Cortázar

The story revolves around a young narrator, her sisters Holanda and Leticia, their mother, and their aunt Ruth. Leticia suffers from an unidentified back ailment and often directs their play. Told from the point of view of a child learning to understand disability, with emotions ranging from pity to envy: Leticia is excused from chores and catches the eye of an appealing stranger. Could begin discussion of how people with disabilities are perceived and responded to by able-bodied peers and family members, portrayals of relationships. 8 pps (4500 words); Argentinian dialect; some very funny moments.

Mi hija estaba muy viva. ¿Cómo es posible que ya no esté?

Sarah Wildman describes her grief after losing her 14 year old daughter to cancer. Her efforts to describe her feelings lead through several languages, offering possibilities for discussion of translation. Intermediate level, 2-3 pages.

Learning Our Son’s Language

Pediatrician Vidya Bhavani Viswanathan describes learning to communicate with her autistic son by changing her own expectations about what constitutes "communication" and how we can connect with one another without words. Her essay details the course of her son's loss of language at age 3, and her own struggle to come to terms with this. She writes, "I am a writer, and for me his loss of verbal language was so crushing because words were my primary currency of existing. The way I understood the world was through words, and the way I explained it was through words." Gradually, however, she learns "how to achieve connection without words" and she gives an eloquent list of examples: "Shared enjoyment of something he was interested in; cuddles and tickles that lead to a fit of giggles; city walks with moments of pause to quietly smile his dazzling smile at the crunchy leaves on the ground, the touch of a rough brick wall, the screech of tires, and the wail of an ambulance." The story also includes information about treatments, screenings, therapies, and assistive technology, yet the emphasis is not on "fixing" her son, but on ruling out possible medical causes for his loss of language and then learning to appreciate how he communicates and how she can enter and appreciate his world. The essay could prompt a discussion about autism acceptance, and the importance of presuming that autistic children can connect and communicate when provided with accommodations and supports. It also encourages an appreciation of autistic perspectives and challenges deficit-based stereotypes.

Silenced

Donna Lambers, a maternal/fetal medicine specialist, describes the impact on her medical practice and sense of self when her vocal cords are affected by a thyroidectomy for thyroid cancer. She loses the ability to control vocal inflection. "For instance," she writes, "I’m unable to raise my voice at the end of a question... I can no longer tease or kid or be sarcastic with my family and friends, because it comes off sounding mean. My voice, having lost its cadences, is unpleasant to hear; and now, when giving perinatal counseling to my patients, I have no way to convey the empathy and emotion I feel for them..." She describes with great insight the many ways this has affected her interactions with patients, their families, and co-workers, as well as the frustrations she experiences. The story could open up a discussion about the ways in which effective communication requires more than simply clear transmission of information and the taken-for-granted ways that we construct relationships and enact identities through subtle cues. It also speaks to the challenges of this particular non-visible disability.

Code Switching: Gravel Against Stone

Andrew C. is a queer East Asian medical student who writes about altering his voice and pronunciation to perform what he calls "the most stereotypically masculine version of myself." He describes having learned to do so as a child of immigrants, growing up in a suburban Georgia suburb and wanting to fit in. In the essay, he analyzes why he continues to feel the need to do so in medical school. He says he has yet to meet someone like him who is a physician, and so code-switching is required if he is to enact the implicit model of "competent physician" that is on offer to him. He writes: "I am still carrying the heavy weight of my childhood notion that to be different is to be singled out as 'other'—and I fear that it may impact the outcome of my medical education. These vocal habits are a form of self-preservation. But when I reflect on my childhood, and my lack of exposure to queer-physician role models, I fear that I will be perpetuating the problem." The essay is an eloquent example of why it is so important for health care providers to come from a range of identities and social positions. It also speaks to the challenges for those providers who come from under-represented groups and why equity and inclusion require not only that we diversify, but also that we welcome and value the diversity that people bring. The essay is brief enough to be read together in a class or workshop. It is one of several essays from a writing contest by Pulse, an online site that publishes personal narratives about health care.

Family Stories of Tay-Sachs Disease

The Cure Tay-Sachs Foundation website contains many resources including information about the disease, carrier statistics, family stories, research initiatives, and fundraising opportunities. Tay-Sachs disease is a rare, fatal genetic condition that destroys nerve cells in the brain and spinal cord primarily in babies and young children. It has a history of affecting people of Ashkenazi Jewish descent but now is seen in other ethnic backgrounds. If you click on the “family stories” tab, you can view over twenty personal narratives of children who were diagnosed with Tay-Sachs, often written by parents. The stories are divided into three short sections documenting the journeys from when they first realized something was wrong, how the illness progressed, and what the family’s ultimate decision was in how to handle it. One of the stories is told from the perspective of an adult with late onset Tay-Sachs as well as bipolar disorder, and she describes the experience of dealing with both conditions simultaneously. Another feature of this website to explore is the “drawings of our kids” tab. You can click on any of over fifty names to see an original drawing of children who have died from Tay-Sachs, all drawn by one of the grandfather of one of the children. The family stories would be a very impactful reading assignment in a course about genetic diseases to increase awareness about the many different ways the same disease can affect individuals and families. It could also fit into a bioethics course to prompt discussions or even essays on if/when it is ethical to stop providing treatment and medical intervention for a patient who has a terminal illness with serious impacts on quality of life for the patient and family.

Cami’s Polio Story

Cami's story is one of several on this section of a site hosted by Children's Hospital of Philadelphia, which includes several stories of individuals who had polio. Cami contracted polio as a child in 1954; this short personal story emphasizes the long-term physical and emotional struggles involved in overcoming the disease. Cami expresses concern about the current resistance to vaccines, particularly for diseases like COVID-19, and criticizes the choice to reject proven vaccines as foolish, selfish, and potentially deadly. Cami highlights the lasting impact of vaccine-preventable diseases and questions the wisdom of risking children's lives by refusing vaccination, drawing on her own experience when no vaccine was available for polio. Cami’s story could be used to discuss the ethical and historical considerations of vaccination. It could also illustrate the use of story for public health persuasion.

Dying to be Competent

“Dying to be Competent” details Cottam's experience with healthcare discrepancies in her experience giving birth attributed to the fact that she’s a woman of color. Cottom describes having her physical pain be completely dismissed by healthcare professionals and claims that this resulted in the tragic consequence of her daughter dying shortly after birth. Through her personal story, Cottom illustrates the inequalities within healthcare due to structural racism, and the grave lack of care women of color too often receive. This essay could be used in classes to further investigate the structural forces within our society and how they are subsequently intertwined with healthcare as well as how it creates marginalization and lack of care within the healthcare system. Additionally it could be used to discuss the role of unconscious biases and stereotypes within the medical field.

Eight Lives – United Nations Population Fund

From the website: “UNFPA is the United Nations sexual and reproductive health agency. Our mission is to deliver a world where every pregnancy is wanted, every childbirth is safe and every young person's potential is fulfilled. This publication, Eight Lives: Stories of Reproductive Health, relates the tales of eight women who have endured the challenges of poor reproductive health.” The anthology includes stories about breaking the cycle of female genital mutilation, family planning, HIV prevention, sexual violence, becoming a teen mother, maternal health, midwifery, and obstetric fistulas. “Each story gives a voice and a face to those most affected by the failures of a dysfunctional health system — and by gender inequality, violation of their human rights, blatant disregard for their social and cultural circumstances, and abject poverty.” This source could be utilized in a class focused on global perspectives on reproductive and sexual health. Discussion could be focused on marginalized communities within the healthcare system as well as differences between healthcare systems across countries.

Being Heard: Empathetic Artistic Interpretations of Young People Living with Serious Medical Conditions

The "Being Heard" project explores how artists can help young adults with serious medical conditions feel understood and cared for. Young adults worked with a team that included a nurse researcher from The Institute for Integrative Health, an art therapist/social worker, and two professional artists. Each child wrote an "I Am From" poem and then participated in an interview with an artist, who created a painting and accompanying narrative based on what they heard. The nurse researcher and art therapist then shared the painting with the child, asked for their thoughts and feelings, and offered an opportunity for the child to create a watercolor print. The exhibition at the Children's National Medical Center included eight paintings by patients between the ages of 10 and 19; the booklet from the show also includes the art work, poems and children’s responses. The Washington Post ran a story on this project, available at this link.