COVID-19 Narratives

Cancer Journal by Bill Gardner

Bill Gardner is a psychologist, mental health services researcher, and former member of the Center for Bioethics & Health Law. He is now a professor in the School of Epidemiology and Public Health at the University of Ottawa. When he was diagnosed with cancer during the current pandemic, he decided to write about his experience. Cancer Journal addresses a range of bioethics-relevant questions about COVID, cancer, “health,” the Canadian healthcare system, and medical decision-making.

  1. “I have serious news.” My day and night in the Emergency Department on July 2nd and 3rd, 2020; in which I was first diagnosed with cancer.
  1. Playing for real money. In which I meet my tumour. I explain what kind of cancer I have, what likely caused it, and why having everyone vaccinated against the human papillomavirus matters, even for men.
  1. Treating cancer — So many decisions. There are difficult choices for treating cancer. Here’s how I made them.
  1. Not-so-shared cancer decision-making. How is treatment supposed to work when you can’t communicate with the Cancer Centre?
  1. Radiation Therapy for Cancer — What’s It Like? For one thing, they put you into a machine. Wearing a mask.
  1. Radiation therapy for cancer: Two weeks left. On what it’s like to be a cook who loses the ability to taste.
  1. Radiation therapy for cancer: DONE I’m through. With a health intervention from my dog.
  1. Fighting Cancer and Fighting COVID-19. Why I don’t ‘fight’ cancer.
  1. Hallway Medicine. I travel by ambulance to an Emergency Department and get treated in the hallway. Why that happens in Ontario.
  1. “So, how do you feel about having cancer during COVID?” The emotional cost of cancer.
  1. WTF, I have a lung tumour? In which I get to read the results of my CT scan online, before my doctor sees them.
  1. What is health? It’s not clear what ‘health’ means, but you need to get clear about it to make a good decision about your care.
  1. The PET Scan. I have another test to check whether radiation killed my tumour. And it suggests that the tumour is still there.
  1. How to Live with Cancer. Getting through with a good marriage, a good dog, and Peloton.
  1. Ontario on the Edge. How the pandemic is threatening our provincial health care system.
  1. SHATTERED. I get the results of a biopsy. My cancer is back and my prognosis is bad.
  1. Hard Conversations and Deep Attention. How do you have a conversation about dying?
  1.  Immunotherapy. My search for a new treatment strategy.
  1. Citizenship in the Kingdom of Malady. Cancer as a personally transformative experience.
  1. The Combined Positive Score. Finally, some good news: I might be the kind of person for whom immunotherapy works.
  1. The Sad Thing About Good News. Good news about my treatment.  But in cancer, even good news can pose a challenge
  1. A Soldier of the Great War. A cancer memoir, like this one, tells a life story. So how does cancer figure in mine?
  1. Thanksgiving. A long road trip, searching for treatment.
  1. To Hope or Not to Hope. In the liminal world between life and death.

 

COVID CULTURES — Carnegie Mellon University students

In Spring 2021, Center affiliated faculty member Candace Skiba taught COVID CULTURES that explored themes related to the pandemic. These included vaccine supply and vaccine passports, as well as depictions of COVID-19 in visual and performing arts, questions of spirituality, and personal narratives and journalistic accounts of COVID-19. The students’ work can be found here.

 

Literature and Medicine students

The centrality of narrative and language in the pursuit of medicine and healing is a theme in my Literature and Medicine seminar. When stories about the novel coronavirus emerged, I adjusted writing assignments so that students could engage with these emergent narratives.

What role is played by scientific/medical authority—and other kinds of competing authority—in disseminating scientific knowledge during such a time?  What kinds of physicians’ narratives and patients’ stories were most powerful at a time when knowing how the virus is spread and affects the body—both the patient’s body and the social body—is literally a matter of life and death?

The students approached these questions in a variety of ways employing strands of the themes and issues discussed in the seminar. Some chose to write about the course texts themselves; others about new sources and mediums of information. —Uma Satyavolu

Medical Humanities in Quarantine—Ali Aijaz

TikTok, Lies, and COVID-19—Maya Albanowski

Mythology of a Quarantine—Hussain Alkhars

Do Those with Wisdom Truly Hold Power?—Emma Bova

Medicine and Spirituality Unified – What We Need in this Pandemic—Anjalika Chalamgari

A New Kind of Pandemic—Joseph Crooks

How COVID-19 Exposes the Isolation of Minorities in America—Aya Dakroub

Fear and Pandemic through the Lens of Literature—Cara Fleseriu

The Power of Knowledge—Lucy Gonzalez

A House Divided: Narratives of Knowledge During Covid-19—Naina Kohli

COVID-19 and Healthcare: A Student/EMT’s Perspective—Daniela Krahe

The Therapeutic Nature of Literature—Joel Merriman

The Therapeutic Nature of Literature—Kestrel Merritt

Coping With Vulnerability Through Narratives—Aakriti Neopaney

The Shadow Pandemic: Imagine What It Is Like—Oreoluwa Odeniyi

Primum Non Nocere: Do No Harm—Sarah Sha

Coronavirus and Its Attack on Minorities—Minali Tare

COVID-19 – Altruism and the Human Condition in Historical Texts—Christian Tumandao


Healthcare providers

Physician Meeta Prasad Kerlin chronicles her sister’s attempts to obtain a kidney transplant during the pandemic, It Is What It is, September 21, 2021.

Every Minute is a Day: A Doctor, an Emergency Room, and a City under Siege is the product of collaboration between New York Times writer Dan Koeppel and his cousin Robert Meyer, who worked in the emergency room of Montefiore Medical Center in the Bronx during the pandemic. The book documents the experience of working at the epicenter of the pandemic in the US.

Life on the Line: Young Doctors Come of Age in a Pandemic, by Emma Goldberg, follows six physicians-in-training who begin their medical careers during the pandemic.

1 day in the ER, a 6-minute video made by Craig Spencer, MD, MPH, who concludes the account of his day in the ER saying “I survived Ebola. I fear COVID-19," November 29, 2020.

The Epicenter: A Week Inside New York's Public Hospital—photographs by Philip Montgomery and test by Jonathan Mahler.

State of Emergency—an ER doctor in New York writes “A Covid Diary: This is what I saw as the pandemic engulfed our hospitals," by Helen Ouyang with photographs by Philip Montgomery.

Stanford University’s Talk Rx, a live storytelling series established in 2017, is going virtual during the pandemic. Clinical students from everywhere and from all health disciplines are invited to share their stories. Contact the organizers—Pablo Romano, a third-year medical student, and Medicine and the Muse Writer-in-Residence and Director of Writing and Storytelling, Laurel Braitman PhD—for details, or complete the form here.

A Shift on the Front Line by physician Silvia Castelletti, NEJM, April 9, 2020.

An ICU Nurse’s Coronavirus Diary by Simone Hannah-Clark, New York Times, April 5, 2020.

Clinicians Are 'Sent Into War With Pool Noodles,' ICU Doc Says, a conversation between Abraham Verghese, MD and ICU physician Angela J. Rogers, MD, MPH, podcast and transcript

Coronavirus in New York - Report From the Front Lines by Michelle N. Gong, MD, MS, Chief of Critical Care Medicine at Montefiore Medical Center in the Bronx, at the center of planning for the surge of patients who will require mechanical ventilation and intensive care, a JAMA audio interview, March 23, 2020.

Pandemic Influenza Storybook—This collection of personal recollections was released by the CDC in 2008 to commemorate the 90th anniversary of the 1918 flu pandemic.

A New York Doctor’s Warning: China warned Italy. Italy warned us. We didn’t listen. Now the onus is on the rest of America to listen to New York.—Emergency medicine physician Fred Milgrim in The Atlantic, March 27, 2020.


Living and working with COVID-19

Year of Plagues: A Memoir of 2020, by poet, novelist, and playwright Fred D’Agular, is his first nonfiction work. In it, he describes his personal diagnosis with Stage 4 cancer during a year marked by a new public health crisis and public reckoning with ages-old racial injustice.

Plague Journals and the Need to Capture Time by Alissa Wilkinson considersWhy do we preserve the scary, endless pandemic days?’ and in its closing paragraphs discusses several of the efforts writers and artists have made to record this pandemic time, March 11, 2021

‘Right Now Feels So Long and Without Any End in Sight’/Dear Diary: This Pandemic Has Been a Bear, by Benedict Carey reporting on (and providing excerpts from) The Pandemic Journaling Project, on February 15, 2021

Student Voice: 100 Argument Essays by Teens on Issues That Matter, an anthology from The New York Times Learning Network of essays written by 13-to-18-year-olds includes essays on COVID-19, edited by Katherine Schulten, 2020

How Did I Catch the Coronavirus? by Carolyn Kormann recounts her experience having COVID-19 and constitutes a “parable revealing the limits of both contact tracing and preventive measures to avoid this “atmospheric threat.”

‘I Wish I Could Do Something for You,’ My Doctor Said—The day before this 33 year old woman became ill, she ran 3 miles, walked 10, and ran up 5 flights of stairs; a month later with lingering pneumonia, she still sleeps on her stomach and comments in this May 14, 2020 commentary that “many of my neighbors didn’t make it.”

A woman living alone: Seven stories of solitude during the coronavirus, from ages 24 to 86 by Caroline Kitchener with illustrations by Olivia Waller

How New Jersey’s First Coronavirus Patient Survived by Susan Dominus—the story of the first person in New Jersey to test positive for COVID-19

My Whole Household Has COVID-19—Deborah Copakan in The Atlantic, March 27, 2020—Also, as a “public service announcement,” Copakan recorded her cough that might be said to speak for itself.
St. Mary’s College Student Came Home from Spain with COVID-19, NPR, March 30, 2020
A pictorial narrative, 14 Days of Enforced Home Quarantine by artist Gareth Fuller

Wuhan Diaries

Swabs, STAT! Inside Puritan Medical Products Co., a narrative of the company producing the swabs the diagnostic testing requires, Bloomberg, March 25, 2020

Reflecting on COVID-19—from the computer, from the head of the Center for Bioethics & Health Law, from the heart, March 24 – April 3, 2020


Archives and collections

What Historians Will See When They Look Back on the Covid-19 Pandemic of 2020 describes the efforts of various universities and other institutions to document people’s experiences of this pandemic.

The University of Pittsburgh Archives is creating an archive of the impact of COVID-19 on the Pitt community and the University’s response to the pandemic, and contributions are welcomed.

COVID-19 Diaries (and interviews) from around the globe, Luck-It, February 8, 2020 - present

A Journal of the Plague Year: An Archive of Covid 19, an archive established March 13, 2020 by Arizona State University historians in collaboration with a global network of scholars, described as “curating a pandemic