header photo

The Journal of Multimodal Rhetorics

ISSN: 2472-7318

Writing at the Intersection of Living in the Pandemic and Living with an Autoimmune Disease

Victoria L. Braegger

Table of Contents

Keywords: medical ableism; chronic illness

Categories: Creatively Caring for Self, Others, and Place; Reflecting on Academic (Over)work and/or Precarity; Disability, Illness, and Survival (When the World Doesn’t Want You To); Creatively Caring for Self, Others, and Place

Content warning: medical ableism

“If you get Covid, you’re going to die.”

Those were the words a potential new neuro said during my first appointment in March 2020. I had just moved to Indiana in August 2019, and I had put off finding a neuro while I settled into the new place. I was testing the water, seeing if he would be the neuro I established care with for the next five years. He spoke over me, ignored my permanent and new symptoms, lost my MRI records that showed stabilized lesions from treatment for multiple sclerosis over the past three years, and discussed my condition with my husband instead of me, but none of that got to me. I expected (and had experienced) most of that.

It was the way he laughed after he said, “If you get Covid, you’re going to die.” Deliberate. Mocking. Too casual.

I didn’t need the reminder that to control my disease, I was suppressing my immune system. I didn’t need the reminder that I was particularly susceptible to respiratory illness. I didn’t need the reminder that my body would fail to protect me if I needed it to. I didn’t need the reminders because they were always present, always in the back of my mind as the pandemic began to unfold. He thought I did.

“If you get Covid, you’re going to die.”

It framed—and continues to frame—my entire experience during the pandemic. I don’t want to die, but I’ve lost the medical support needed to keep my body at what was my normal pre-pandemic operating level. There’s a new normal in town now, and sometimes it clouds my brain and replaces all feeling with pain.

During the initial lockdown, I lost access to physical therapy and gyms. I lost access to consistent physical activity, being instead confined to my apartment. I lived on the second floor of my building, so strenuous exercise to keep my right leg (the leg I affectionately call zombie leg) functional wasn’t a possibility. I experienced a relapse at some point, a characteristic of relapsing/remitting multiple sclerosis, that left me with new permanent symptoms. My balance went first, followed shortly by my ability to walk without limping or dragging my right leg. Brainfog set in for months. Some days I couldn’t get out of bed. Symptoms stacked while I tried to sort what was permanent and what could (potentially) be fixed.

Medical intervention wasn’t a possibility. The neuro’s words echoed in my head: “If you get Covid, you’re going to die.” I didn’t have a general practitioner in Indiana. The instacare was full of infections, full of the possibility of death. The neuro had a six month wait-time, by which point any intervention wouldn’t treat the damage done—and I didn’t want to see him again anyway. I added “find a new neuro” to my list of things to do.

I waited it out with the help of my husband, who took on the role of physical therapist on top of his job as a high school teacher whose school didn’t go online. We waited it out together, trying to piece together the parts of my body that were falling apart. Sometimes, I would fall apart faster than we could grasp at the pieces. Sometimes, the pieces didn’t fit perfectly back together. Four months into the pandemic, I ordered a cane to help me move around. I was rewriting what it meant to live in this body, what it meant to be. I listened as debates raged on about what mattered more: the disabled or the economy? I unfriended and unfollowed those who believed I was a rightful willing useful functional sacrifice to the economy. A sacrifice, but I can’t place my finger on what kind of sacrifice I was expected to be.

Sometimes the words don’t come; sometimes all I’m left with is deletions on a page where words are meant to be.

When you are acutely aware that your body is failing you, productivity becomes harder. I was always aware that I was in pain. My legs hurt, nerves constantly firing from damage in my spine. Sleep was difficult as my legs kicked on their own volition. The fatigue associated with my disease that I had been keeping at bay now had insomnia on its side, making both fatigue and pain management difficult. Brainfog set in and stringing together sentences—let alone paragraphs—was an impossibility. I couldn’t make sense of my thoughts. Knowing that I was the problem was stressful; I couldn’t shake the feeling that I was an absolute failure for not being able to function, for not being able to produce anything—for not being able to compete with who I was pre-pandemic. As the stress piled on, it exacerbated my disease and would leave me bedridden for days at a time. This didn’t stop academic expectations; academia thrives on traditional modes of communication. I went through my doctoral prelims (a 24-hour exam and a 7-day exam) during the pandemic, an event that left me hobbling and grasping at words for days.

There are words on pages somewhere, but their use is limited to simply proving that I know them.

My writing became multimodal in this space, but ultimately useful: I wrote (and write) to remember. Writing became a lifeline rather than a tool to showcase everything I knew, everything I could parrot back. What I needed was a way to combat what my disease wanted to take away from me when left to its own devices and without effective medical oversight. A quick voice memo about a thought on my research? That’s writing. Recording my husband and my cat having a full conversation? That’s writing. Tweeting about hateraids on Twitch? That’s writing. Organizing to reform preliminary exams that are archaic and systemically ableist? That’s writing. Taking a long drive to collect my thoughts? That’s writing. Giving feedback to students? That’s writing. I gave myself permission to expand what it meant to write, and permission to sometimes not write at all.

This may be called laziness or unproductivity or symptomatic of a decrease in academic rigor.

I’m okay with that. 



Victoria L. Braegger is a PhD candidate at Purdue in rhetoric and composition, studying games and technical communication. Her research focuses on gamer identity, game controllers and peripherals, and issues of accessibility in digital gaming spaces.

Table of Contents