When you put the search term, “medical memoir” in a Google search, you find an odd collection of “best of” lists: the ten best for pre-meds, twelve memorable, the list every aspiring physician should read, must-read memoirs about health written by women. Perhaps nothing solidifies a sub-genre quite like these lists. But as someone who writes about illness, the relationship writer to reader feels more complicated and complex.
When I write about living with chronic illness, I often become frustrated with how other people want me to depict it. Disability stories often carry the baggage saddled on disabled bodies, which is to be inspirational, as if disability itself wasn’t enough for the writer to contend with. Implicit in this desire is the idea that such stories will make the reader feel better about themselves. That’s not my project as a writer, or, really, as a human being. I explore this idea in essays about my changing sense of self brought about through years of living with RA. In the opening to my essay, “In Sickness,” in direct address to my reader, I find I implicated us both simply by narrative technique:
The worst possible thing happened. It’s what you most want to know and it is what I least want to tell you. Why is it that we must tell that silent, horrible thing? And how can I tell you, without being the object of pity? When you are the main character of your own story, the process of sifting through what you want to tell and what you’re willing to tell competes with what is expected of you to tell. If I tell you I was a ballet dancer, it might pique your interest, but if I tell you I was a dancer turned rheumatoid arthritis patient, there’s something more there you want to read. I know it. I’m always told, “That’s what you should write about” (Nicholson, 61).
Writing “In Sickness” represents one of my most cathartic experiences. A long-hardened piece of me was permeated and softened, and I openly wept in the early drafts. On a more technical level, direct address implicates both writer and reader, and the second person “you” would be one that I employ quite a bit—from direct address to the rhetorical stand-in for “I.” It is an attempt to bring a reader closer to my experience. It’s inherent in both my persona and my illness-influenced craft. How better would I bring a reader into my lived experience, especially of such embodied states as experiencing physical illness, than to use the second person? I don’t know. Like many craft questions, I find myself looking at them postmortem. That is, my intuitive approach now benefits from the heft of intellectual and artistic scrutiny. “A big part of making creative decisions is relying on what I guess we can call instinct—the intelligence of the imagination, the spirit, maybe, what we used to call the muse,” writes memoirist Melissa Febos. “A big part of instinct is just the cultivated habits that we refer to as skill” (37). I’d further this by saying that our particular skills can also be influenced by our physical selves, as these selves are tethered to our imaginative ones. We might invent ourselves, but we don’t escape our bodies.
The more I study essays after creation, the more clearly I appreciate the implications chronic illness has on the forms I choose, as well as hazier connections to the creation of voice in my work. Mary Karr’s assertions about memoir and voice maintain that a writer can take almost anything as her subject as long as she has created the compelling and authentic voice that will pull us through the piece. “Each great memoir lives or dies 100 percent on voice…Each voice is cleverly fashioned to highlight a writer’s individual talent or way of viewing the world” (Karr, 35) And so, we might think about illness as the birthplace of an authentic voice. My voice as my view of the world is both disfigured and fractured. This comes out in both voice and form. Yet, I would maintain its not enough to sustain it. Melissa Febos, in Body Work, writes, “It’s not experience that qualifies a person to write a memoir, but insight into experience” (137). If illness births the voice, in the hands of a skilled nonfiction writer, this must change as experience is infused with insight. Quite frankly, a tall order, but done right, fuses form, content, and voice.
As I consider the past advice of teachers and fellow writers that I create a straightforward memoir, which I understand as a linear one, I’m never able to follow this counsel. My embodied experience doesn’t feel linear. Illness is chaotic and episodic. I can tame the chaos with words, but the form stays fractured. So much of my experience in the world has been cut up by bouts of illness, and this fractured experience can offer more insight, I’d argue, by remaining fractured as it seeks insight into its very fracturedness. This helps me unpack the relationship that must exist between the illness I live with and the life depicted on the page. “That desire to become whole is a necessary starting point from which to establish stable ground for healing work,” writes Febos (124). But the whole that’s created can be a mosaic that’s assembled from the fractured parts. As well, memory itself strikes me not as linear but as associative. To heal as I write, then, may be more akin to this associative impulse, to connect in those strange ways that’s less like lived life and more like dreaming. The dream state both connects and disconnects me from day-to-day illness, freeing me to both be in it, to circle it, to see it from a 360-degree vantage point. In describing the craft process of seeing myself—my illness self—in the personas I create, I’m also in-line with Louise DeSalvo “Engaging in creative work, perhaps more than any other human endeavor, allows us to be autonomous while also providing us with the opportunities for establishing a sense of interconnectedness with others” (109). The alchemy that is my writing transforms despair into discovery into understanding, even an uneasy understanding, between writer and reader. I do not disappear under the weight of illness, but leverage it to make art. At least, that’s the worthy challenge.
I find that I write in mosaics, fitting them together like the smashed-up tiles of Barcelona’s Parc Guell, the fabulous imagination of the architect and artist Gaudi, where pieces reconstitute in hypnotic flights of fancy. I have to believe this can be achieved on the page, with words. Febos reminds us that “a memoir is a diorama of experience, populated only partially with the memories we carry to the desk” (50). In my approach to nonfiction, I bring all these fragments to the diorama, bits of bits, and fashion the view as if one box holds multitudes of tiny other boxes. It could be akin to what Jane Alison writes in Meander, Spiral, Explode: Design and Pattern in Narrative: “connections can be constellatory” (233). Perhaps instead of boxes, all I need do is look up at the mosaic that are stars in our night sky to understand how pattern and meaning work.
Reinvention feels like the right place for my chronically-ill self to approach nonfiction. Medicine reinvents me, I reinvent me, life events reinvent me and my relationships. Culture reinvents itself, and I reinvent my relationship to it. “Take your own voice and destroy it. Shatter it and look at yourself in each of the glinting pieces,” Sonya Huber writes (102). “Pain smatters time into a mosaic” she also says (112). These words resonate with my process because craft and self cannot be neatly cleaved like our organs by surgeon’s scalpel. But I can restore coherence. As things fall apart, they come back together, creating something if distorted from the original, wholly new.
I also honor my instinct to write in short-forms that connect across pieces, instead in longer, integrated wholes. The logic is mine. I’ve never been able to sustain long-form writing—that is not traditional memoir. As much as I write, it’s never one, long, cohesive narrative, but broken and restrung together. In short, it’s fragmented. It has to be. Writing as a prosthetic—the artificial engaged in the organic. Fragmentation intimately connects my life as a writer with chronic illness. My creative work mirrors the form of my lived experience. It’s authentic and it restores me, if not to health, then to a place of well-being. In this way, the fragmentation is organic, too. They’re mine. It might not be wisdom, but it may be something more potent. Reparation as inspiration. And in its wake, I may just be transformed.
Alison, Jane. Meander, Spiral, Explode: Design and Pattern in Narrative. New York: Catapult, 2019.
DeSalvo, Louise. Writing as a Way of Healing: How Telling Our Stories Transforms Our Lives. HarperSanFrancisco, 1999.
Febos, Melissa. Body Work: The Radical Power of Personal Narrative. New York: Catapult, 2022.
Huber, Sonya. Pain Woman Takes Your Keys and Other Essays From a Nervous System. Lincoln and London: University of Nebraska Press, 2017.
Karr, Mary. The Art of Memoir. New York: HarperCollins, 2015.
Nicholson, Renée K. Fierce and Delicate: Essays on Dance and Illness. Morgantown: West Virginia University Press, 2021.