Submission Medium: written

My body is a cage of my own making

An accessible, 7-8 page excerpt from her book, Hunger: A Memoir Of (My) Body. Roxane Gay writes about her struggle with her weight and body image. When people commented on her body, refused to sit next to her on planes, or took food out of her grocery cart, Gay struggled to accept, and even love, her body. When she broke her ankle and needed emergency surgery she began to take a healthier approach to living in a larger sized body. Useful for classes and community groups to talk about fat-shaming.

¡Por favor, déjame lavar y aspirar más!

Sam narrates the impact of his pseudoxanthoma elasticum (PXE) through his chores around the house. After a discussion with his wife, Anna, about how to fairly split up these duties while his vision progressively worsens, Sam takes up cooking. Chores used to be tedious, but now he admits he finds peace in being able to perform actions like vacuuming and making the bed. Most importantly, he discovers that he and Anna share these out of the love they have for each other. Pseudoxanthoma elasticum is a hereditary disease that calcifies elastic fibers, mainly connective tissue. A case study about this disease could be supplemented with this article in medical school. Focus on relational issues would appeal to an undergraduate class. 20 minute read for advanced Spanish learners.

True Stories: Living with HIV

This web page provides the stories of three people with HIV. Each story is unique, but they have all come to embrace their lives with HIV, providing support to those who recently received a diagnosis. Chelsea White now runs an HIV and AIDS adolescent outreach program. Nicholas Snow hosts a radio show that touches many topics, including life with HIV. Josh Robins manages a blog to emphasize that he is still the same person, to reduce the stigma of AIDS, and to connect with others who also have the disease.

This 10-minute read could be used to discuss stigmatizing conditions, perhaps to have general audiences reflect on stigma or a starting point for further research into how those diagnosed with HIV can lead the lives they had before the diagnosis.

My Life is More ‘Disposable’ During This Pandemic

Written near the beginning of the COVID pandemic, the essay discusses how triaging care and minimizing the severity of COVID (e.g., saying, “only” chronically ill people and the elderly are likely to become severely ill or die) reflects the lack of value placed on the lives of the old and disabled. The author, Rabbi Elliott Kukla, is immune compromised and a child of parents who survived the Holocast. He reflects on how people’s unwillingness to give up travel or eating out to help stop the spread reflects a lack of care for those who are vulnerable.

Although written early in the pandemic, the essay picks up on themes raised by disability and other activists, questioning the “return to normal” following COVID. Could be used to prompt discussion of the difference in scale between public health arguments and statistical analysis and the value of individual life and perspective this narrative advocates for acknowledging.

How and Why Patients Made Long Covid

This article documents the central role of patient narratives in establishing “long haul COVID” as a phenomenon. The article explores how case studies, Tweets with a shared hash tag, and high profile news stories of individual patient experiences challenged conventional medical wisdom during the early period of COVID. The article also acknowledges that power differences in whose stories receive attention played a role in “long haul” being accepted. This is a brief article that could be assigned in conjunction with first-person narratives to explore how patient narratives are related to accepted medical knowledge, research agendas, and public health communication.

2020 was One of the Best Years of My Life

Inêz Mália Sarmento is disabled autistic author who describes how her experience during the pandemic included growth and development. “It helped me understand even more that the world was ready, it just wasn’t using its resources the right way, meaning, the world could be accessible for everyone if we wanted it to be. That made me feel a bit resentful. But it also gave me the fuel I needed to keep pushing against the grain.” As a result of this access, she finished high school, began college, and made friends. She questions “going back to normal” and reducing these services.

COVID-19 through the Eyes of a Black Medical Student

Shuaibu Ali is a medical student who reflects on how his experiences growing up in an urban environment increased his risk for various health conditions. He makes the case for the importance of personal stories from individuals from historically marginalized groups as a way of personalizing statistics on health disparities and exposing conditions that create them.

I have used this essay in an undergraduate narrative medicine practicum class to prompt discussion about the importance of hearing stories from marginalized groups and the power of story to mobilize social change.

Me and Mrs. Dalloway: On Losing my Mother to COVID-19

Spitzer describes caring at a distance for her mother and father with COVID. Her mother dies, and Spitzer (a literary scholar) explains how Virginia Woolf’s To the Lighthouse (a book that helped Woolfe come to grips with her own mother’s death) takes on new meaning as Spitzer grieves her mother. She explains, “Reading and interpretation are how I deal with overbearing emotion, and they are also the way I am working through this grief and making it mine.” She asks, “How to square the collective grief of COVID with the solitary grief of a mother’s death and a father’s illness?” and here, too, she finds insight in Woolfe’s work, Mrs. Dalloway. The essay’s concluding section describes interactions in her neighborhood and the process of grieving during social isolation.

The essay could be used to discuss different ways of dealing with grief, and some of the common and distinctive features of COVID-related grief. It also points out the value of literature and personal stories in grieving processes.

On Witness and Respair: A Personal Tragedy Followed by a Pandemic

Ward describes losing her 33-year old husband in the early days of COVID when transmission wasn’t well understood and treatments were non-existent. The essay opens with a loving tribute to his individual attributes, a useful move to personalize the statistics on COVID deaths. She puts her loss in conversation with the plot of a novel she is writing about an enslaved woman who loses family and with protests in response to the murder of George Floyd.

The short essay is accompanied by a 14:27 minute audio reading.

This essay could be used in a course to prompt discussion about health disparities in COVID and the connection between those and a larger history of systemic racism. It also gives insight into grief and loss, both individual and communal, and the ways in which story is a way of processing and acting upon it.

Front Lines: Poets & Physicians Document COVID-19

This project paired poets with NYC-area physicians to write poems as a way to provide space within and beyond the creative process for catharsis, shared understanding, and healing. The project started in spring of 2020 as a collaboration between two sisters–poet Elizabeth Fernandez and physician Nicole Fernandez. At the time I accessed this (8/11/22) there were 13 poems by 8 poets, written “for” 8 physicians. The poems (from June and July 2020 and October 2021) capture the experiences and emotions of these front-line health care providers during the early part of the COVID-19 pandemic.