How Learning to Live with Illness Taught Me a New Way to Learn
How Learning to Live with Illness Taught Me a New Way to Learn
A Guest Post By Edith Hollander
Theories and Diagnoses
I have always been a lover of theory. As a philosophy major in college, I took great pleasure in the ability of ideas to affect my perception and, thus, my experience of the world. When I entered a graduate program in social science last fall, I was trained to define theory less romantically and more in line with the logic of scientific knowledge. Specifically, I was taught that good theory explains the relationships between variables and is able to make predictions. During this same period of my life, I found myself blindsided by a range of accumulating, ever-shifting physiological symptoms in the absence of any reasonable explanation.
I came to feel that a diagnosis is the best and worst form of theory.
First came the chest pain and heart palpitations, which I thought were caused by a recent COVID infection. Frequent ER and cardiology visits yielded reassuring test results, but the sensations still jacked up my entire nervous system, making it hard to breathe and carrying a distracting sense of urgent danger. Most affronting to my life as a student, cognitive problems caused by both the medicines I was prescribed and the illness itself locked me in a dream-like state that impaired my memory and ability to process information.
I’d read sentences over and over without connecting the words to one another and stare into space for minutes at a time before realizing I was no longer reading. The sudden onset of light sensitivity and eye pain made it twice as hard to understand what I was reading. Worse, the symptoms fluctuated in nature and severity. Random bouts of muscle weakness made it difficult to drive, and repeated allergic reactions to medications made attempts at treatment unpredictable. At the peak of what I would later understand to have been a COVID-triggered flare of my disease, there were hours in which I could only walk around my apartment from room to room, crying, unable to carry out simple tasks like getting a glass of water. The term “brain fog” did not seem to do it justice.
I was very disoriented, not only by the symptoms but also by the emotional injury that formed around each disabling experience. Every time they emerged, I repeated an agonizing game of guessing at how long they would last and how I could possibly compensate as a student. How much better will I have to be now? became the soundtrack of my everyday life. How much more diligent, more perfect in my choices, and how much more stoic and enduring? My intellectual learning about scientific theory was paralleled by an immediate, animal need to know what would happen to me.
A diagnosis is the best type of theory because it offers us a path forward to express our agency when we feel helpless. A diagnosis is the worst type of theory because it often signifies that we can’t go home to our old life ever again.
About eight months after the onset of symptoms, I did finally get that bittersweet explanation: autoimmune thyroid disease. My prognosis was that it would improve as I gained distance from the viral infection that triggered it, but it was unclear how long that would take and if it would happen again. But I still wanted to be a graduate student; after two years of COVID halting my professional plans, the work felt too important to my identity and sense of purpose to sacrifice. Exhausted by fear that had not yet become grief, I had to find ways to continue on with my academic life. This reflection is as much about the trauma of being constantly and repeatedly exposed to a feeling of threat as it is about the somatic reality of illness. Both radically changed my relationship to academic productivity, writing, and creative practice.
Sometimes, we have to re-discover and cultivate a feeling of safety within new internal landscapes. Learning made me feel more like “me,” and I wanted to keep it.
Changing as a Writer and Learner
My identity as a writer used to be “over-reader and outliner.” I would spend most of a project's timeline ruminating about ideas and then write quickly in short bursts right before the deadline. This was a product of my naturally slow, detail-oriented way of thinking but also a symptom of procrastination that originated from internal and cultural pressure to write well and for long durations in every session. I was well aware of anti-procrastination strategies like shitty first-drafting, making daily writing commitments, and “ninja writing” in short intervals (which Barbara Sarnecka outlines very well in The Writing Workshop: Write More, Write Better, Be Happier in Academia).
But I could never lower my own expectations and resistance to the near-painful intensity of concentration I associated with writing enough to start earlier. I also did not believe what so many people said about my ability to "think through writing." It was not a way to organize my ideas; instead, it was like trying to draw realistically in my head what I already knew. I did get there a lot of the time, but it was exhausting—like intellectual brain surgery.
So, in retrospect, I understand that I could not change my writing habits because it would have meant changing my entire learning process in a way I was unprepared for. My illness forced me to do just this. In the second semester of my program, I enrolled in a pass/no pass writing workshop in order to effectively reduce my course load and focus on re-learning how to be a student. I came to terms with the fact that my situation was chronic and that I could not base my work life on needing to know what was going to happen.
One way to think about being a producer and a sick person is that we can no longer afford the self-admonishment that tends to come with the unreasonable expectations placed on us by our culture and the neoliberal academy. For me, I learned that my lifetime habit of negative self-talk around work was actually a privilege. I just don’t have the energy to spend on it anymore.
Illness offers a kind of cruel humility; in the words of Whalt Whitman, battles are lost in the same spirit in which they are won. It is not always possible to be well, or appropriate to be happy, and our best efforts don’t always yield relief (whether or not others around us think they should). But a kinder form of humility can also offer refuge from internal stories about what “should” be happening or what we “should” be able to do that add to our existing suffering. We cannot do it all. We should not do it all, and that has been true all along.
In Part II, which will be published on Thursday, I’ll speak about some of the compassion-forward strategies I’ve started using to support my academic practice while dealing with life-altering medical circumstances.
Edith Hollander is a graduate student in Journalism and Media at the University of Texas at Austin and a Graduate Research Fellow at UT’s Center for Media Engagement. Her research interests span technological industries, market-mediated forms of civic life, feminist social movements, and digital cultures. Connect with her on LinkedIn.
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I'm so grateful for this post, Edith! Thank you for sharing your experience--it helps me to feel less alone about my experience with navigating finding a diagnosis and dealing with chronic illness symptoms that turned my world upside down during my PhD. Looking forward to reading part 2!