Our stories about illness are imprinted with the words of those who suffered before us. These writers—be they among the dead, like Audre Lorde, Susan Sontag and Virginia Woolf, or among the living, like Anne Boyer, Esmé Weijun Wang, and Sonya Huber—show us it’s possible to access our experience, if only the way a line touches the outside of a circle. They model for us ways of externalizing a fraction of the pain, dysphoria and joy that characterize a chronic life. Where a doctor reduces us to diagnostic criteria and lab tests, a writer takes her time, exploring the minutiae of the pained body, the crisis of the self. As someone who lives with chronic illness and writes, I hunger for more language, a poetics of pain that’s not for pure poetry’s sake, but for healing, albeit metaphysical and short-lived.
I know that in this hunger I am not alone. Traces of other writers appear in many of the chronic illness memoirs on my shelf. Some traces are faint, like Porochista Khakpour’s nod to Woolf and Sontag in Sick. Some traces are bold, like Leah Lakshmi Piepzna-Samarasinha’s tribute to Gloria Anzaldúa in Care Work. Some traces are bones that we pick with other writers. When Anne Boyer pulls Sontag into the foreword of The Undying, she does so to suggest there’s something odd about a cancer patient taking herself completely out of an illness story; in contrast, Boyer observes, Lorde liberally uses the first person, blending introspection with “a call to arms.” Offering a close textual analysis of Elaine Scarry’s The Body in Pain, Sonya Huber highlights the points of agreement and disagreement, such as on the question of the patient’s attitude toward her own pain in Pain Woman Takes Your Keys.
I could go on because my bookshelf is weighted by such echoes and grapplings. There is no common experience when it comes to illness—only moments of recognition and alienation. This is why we piece together, borrow words and invent new ones. What the books on my shelf tell me is that, as writers who are sick, we long to not only be seen but also to witness and be in dialogue with those who shaped our understanding of illness through testimony and aesthetics.
Having lived with lupus for over a decade, I’ve long turned to writings on illness and disability, but avoided the one writer in American literature associated with the incurable disease—Flannery O’Connor. That avoidance had to do with my discovery of the connection. I was in graduate school, studying Russian and Jewish literatures. O’Connor was not on my literary radar, though I knew her to be part of the American canon. I learned that she had the disease from reading a review of her biography in The New York Times. In it, critic Joy Williams simply states, “She spent the last 13 years of her life in Milledgeville, most of them on crutches, her bones and joints ravaged by lupus. She died of lupus, her father as well.”
I read these words a mere two months after getting my diagnosis and they shook me to my already inflamed bones. It was a Sunday. I was sitting in my junky armchair, drinking coffee and reading the paper as a break before catching up on work. The irony was that I was already desperate to meet another person with lupus, even in the context of literary history. But I didn’t want it to be like this, not with the phrase “bones and joints ravaged by lupus,” followed by the fact of her death, within the span of two short sentences. My eyes skimmed a few more paragraphs, jumping back to the photo of O’Connor on her crutches. Would this be my fate too? I put the paper away, staring into space.
Back then, I did this on a regular basis—read a little, stare into space. I’d read from my handbook for lupus patients that 90 percent survived the first ten years after their diagnosis, then stare into space. I’d pick up a novel to distract me, for instance Irene Némirovsky’s David Golder, learn that the protagonist was sick with a deadly disease and close it, staring into space. Prognosis, lifespan and death obsessed me and I saw their signs everywhere. I performed nonsensical calculations in my head, haggling with fate about how much time I had left and what I would leave behind. I was 26 at the time of diagnosis. O’Connor was 27. She got to live 12 years with the disease. Would I get more or fewer? Thinking about O’Connor, for even the minutes it took me to skim the article, made the hypothetical too specific. It relieved none of my confusion about the nature of my illness, none of my grief for my pre-illness self, none of my dread about the possibility of an early death and the promise of lifelong pain. I yearned to see my disease represented, but this early glimpse made me recoil.
I didn’t intentionally revisit O’Connor for many years, but she regularly entered my peripheral vision of lupus. She makes appearances in books for patients. The Georgia branch of the Lupus Foundation includes her on a list of “some of our lupus heroes and champions.” O’Connor’s story also imprints the words of writers, usually female and white. One writer, Hailey Hudson, who identifies as having chronic fatigue disease, refers to O’Connor as a “lupus warrior”—a common phrase in the illness community. Another author, Caroline McCoy, who struggled to get a diagnosis for various autoimmune symptoms, writes on the significance of O’Connor’s life story and body of work in helping her bear “the emotional burden of trying to live in the shadow of illness.” McCoy confesses, “I kept reading O’Connor, searching her letters and her fiction for confirmation that sickness had damaged her spirit, too. I wanted proof of a twin wound and a model for mending it.” I understood McCoy’s desire for “proof of a twin wound” but continued to shy away from digging up that proof.
In some ways, the proof was already there by the time I read McCoy’s essay. Though I didn’t use crutches, my joints showed years of inflammation; issues with mobility had become a feature of life. But since O’Connor managed to lead what, to my limited knowledge, appeared to be a creatively fulfilling life after her diagnosis I too couldn’t help but wonder if she could be a model for how to accept and even make the most of my chronic condition.
O’Connor’s disease and early death are key to her mythology. Countless literary scholars and creative writers make a point of noting that her career was cut short by her illness but that this didn’t stop her from becoming one of the most beloved authors in the American canon. There’s a romance to the image of O’Connor as a nerdy, sickly woman who pushed on, writing about violence and death. The contrast is powerful. I knew all of this without having read her work. Her importance as a writer with lupus was hard to ignore.
When, in 2018, I published a personal essay about suffering through an especially long and painful flare, I quoted O’Connor. I felt that I had to. In fact, my initial drafts didn’t include any reference to the author, but when my editor green-lit the essay for publication, I felt obligated to include her. How could I erase Flannery O’Connor, the lupus patient of the American letters, while quoting Sontag, Marcel Proust and Roxane Gay? That would be admitting that I had spent years reading around her, too afraid to get close. So I included a quote but felt like a coward, because I knew that my refusal to engage with her writing was entirely about my fear of dying from the disease.
Almost exactly a year ago, I began to read work by and about O’Connor. It was summer and I had the time. I was also starting to stabilize after many months of being in pain and danger, as my inflammation moved into organs it had left alone in the past. As much I depended on the words of writers who had other illnesses, such as cancer, endometriosis and lyme, I also wanted specificity, more language for writing about lupus. Being a scholar of fiction I began with Wise Blood, then moved to the stories, getting to know “the hits.” Writing is always embodied and, like the many critics before me, I was curious about the ways in which illness could filter through her imagination. My observations about O’Connor’s work were hardly unique. There are numerous studies that make connections between O’Connor’s fiction and her experience with disease. Those studies leaned heavily on her biography and personal writings, whetting my appetite for the nonfictional stuff.
As I turned to O’Connor’s biography and letters, specifically those collected by Sally Fitzgerald in The Habit of Being, I strategically read for details pertaining to lupus, getting a sense of why her story appeals to so many who live with chronic illness. When mentioning lupus, O’Connor is often stoic and sardonic though she can also strike a sentimental note without soliciting pity. She knows how to turn a phrase. When she informs friends that she has lupus, she does so while insisting on her potential and drive to continue creating: “I have enough energy to write with and as that is all I have any business doing anyhow, I can with one eye squinted take it all in as a blessing.” That last statement is particularly quotable because it captures a sense of resilience without delusion, a gratitude for a life marked by a disease, one that proved to be fatal. In reference to this quote, one author confesses, “Flannery has taught me how to invert my artistic gaze and see the powerful potential in every experience, no matter how difficult.”
This is a reasonable interpretation, as O’Connor further clarifies: “What you have to measure out, you come to observe more closely, or so I tell myself,” indeed communicating that living with disease (and presumably other forms of strife) can sharpen our perceptions, make us pay better attention, appreciate what we see in richer detail. O’Connor’s words can also be simultaneously elegiac and reverent about her condition. “I have never been anywhere but sick,” she writes to a friend, “In a sense sickness is a place more instructive than a long trip to Europe, and it’s a place where there’s no company, where nobody can follow.” This view of sickness, as both isolating and educational, speaks to me as someone who has learned, since diagnosis, the extent of my internalized ableism and our culture’s failure to acknowledge and create access for the sick and disabled. Without social support, chronic illness indeed spells loneliness and smaller chances of survival.
But O’Connor was not entirely without company when it came to her sickness. The collected letters show that she confided in one writer friend who was diagnosed with lupus, Elizabeth Fenwick. To her, O’Connor spoke about her health problems with irreverence, for example, when writing, “it galls me to have supported lupus for four years and then to be crippled with rheumatism (a vulgar disease at best) of the hip.” When learning that Fenwick had produced a book in six weeks, O’Connor quipped “…I have been thinking well the lupus was good for her. Why don’t it do something for me? But now as you tell me it was just an old corny nervous breakdown, I guess I’ll have to change my theory.” This kind of comment implies a level of comfort with her situation, an ability to make light of it, though unfortunately, at the expense of the mentally ill. On learning that she would need crutches to support herself due to bone problems, she joked “I will henceforth be a structure with flying buttresses,” thus creating a beautiful cyborgian image.
“An air of not giving a fuck” has long been part of the O’Connor persona. I even remember getting a glimpse of that image from my initial encounter with her lupus story. The photograph in The New York Times review showed her on crutches, but with arms crossed, smirking. It’s a striking image and, looking at it last summer, I appreciated being able to linger on it. My fears of sharing a “twin wound” had been dulled by years of surviving with the disease and learning, though always temporarily, how to adjust to its mercurial expressions.
Looking closely at O’Connor’s writings a decade after my diagnosis, I didn’t recoil at our shared illness—I recoiled at her racism. As I read around her comments about illness and disability, I found a white woman who was not afraid to damn Martin Luther King Jr. with faint praise (“I don’t think he’s the age’s great saint but he’s at least doing what he can do & has to do”), and who seemed to almost revel in the use of the n-word. Speaking of James Baldwin, O’Connor had few positive things to say. Writing to her friend Maryat Lee, O’Connor opines, “About Negroes, the kind I don’t like is the philosophizing profesyzing pontificating type, the James Baldwin type. Very ignorant but never silent.” There’s a tendency, across her letters, to put Black people in their place, to tell them they belong in some spaces but not in others. “In New York it would be nice to meet him; here it would not… Might as well expect a mule to fly as me to see James Baldwin in Georgia,” she states, despite admitting that she only read one of his stories and even enjoyed it. O’Connor’s cruel dismissal of Baldwin, whose politics, artistry and queerness can’t be separated, made any charitable engagement with her writing impossible.
The cultural reckoning with O’Connor’s racism has yet to fully occur. There are comments about her views on race in biographies, introductions to her letters and academic papers, but they tend to be asides, not the main points of discussion. And excuses are everywhere. “In her letters, she uses the prevailing locution of the South as easily and as unmaliciously, as it often occurs there, among blacks and whites alike. It was simply natural to her in her time and place,” writes Sally Fitzgerald in her introduction to the collected letters. This long-winded justification of O’Connor’s casual usage of the n-word hits the familiar notes—she didn’t mean anything bad by it and Black people did it too. The common tendency is still to acknowledge the writer’s racism while attempting to redeem her image nevertheless.
A new academic book, written by Angela Alaimo O’Donnell, focuses on race in O’Connor’s body of work but uses the term “ambivalence” in the title, which in literary studies is a common euphemism, even for the flagrant racism of a beloved national author. In his essay for The New Yorker, Paul Elie questions the ultimate impact of the study, suggesting that O’Donnell’s confrontation with O’Connor’s racism is undermined by the portrayal of the canonized author as “prone to lapses and excesses that stemmed from social forces beyond her control.”
Having spent years studying and teaching Russian literature, I’m intimately familiar with all kinds of rationales behind the desperate desire to protect so-called geniuses. Dostoevsky, Turgenever, Gogol, Solzhenitsyn—these are known antisemites but I, a Soviet-born Jew, and precariously employed academic, was expected to teach them in my courses anyway. In discussion with students, I talked extensively about the authors’ tendency to denigrate Jews in their public or private writings. Even with this approach I was uncomfortable but I accepted the bargain. Including them while addressing their racism suggested that they were still worth talking about, that the racism was not a curricular dealbreaker. But I didn’t have to wrestle with my dilemma for too long because my career as a Russian professor came to an end.
As disappointing as that was, I also breathed a sigh of relief at not having to explain, contextualize, or feel hostility from students who just wanted to marvel at The Brothers Karamazov in a class setting. This is all to say that, in my readings about O’Connor, I perceived the attempts at “nuance” about her racial attitudes with a skepticism shaped by years of dealing with racist apologists in my academic field. As Elie deftly puts it, speaking of O’Connor, “All the contextualizing produces a seesaw effect, as it variously cordons off the author from history, deems her a product of racist history, and proposes that she was as oppressed by that history as anybody else was.” Such a mentality, Elie suggests, actually robs the author of her agency, an agency that, to me, is impossible to deny. For example, O’Connor maintained a friendship with the leftist queer playwright Maryat Lee and, despite the intellectual sparring that shows up in their correspondence, O’Connor chose to dig her heels into racism—in her words, to “observe the tradition of the society I feed on.”
“Your fave is problematic” is not only a former Tumblr page and internet meme but a common theme in our encounters with artists as human beings whose actions reverberate through history. Virginia Woolf, a beloved voice in literature about illness, also wore blackface, a fact that must be acknowledged in any discussion of her contributions to culture. Despite not being one of my literary “faves,” O’Connor, in her letters, presented me with some clever musings and poignant articulations of chronic life. She gave me language I could’ve used. But that language does not exist in a vacuum. It is surrounded by other language—words that were and continue to be used to repress Black freedom for the benefit of white supremacy. That language no doubt corresponded to behavior. Even in themselves, those words were acts. When I think about them, I find myself feeling no ambivalence, no need to twist myself into a pretzel to try and claim her, to salvage the legacy of someone who could clearly not care less about the legacy of her fellow writer, Baldwin, one of the most relevant voices in American literature to this day.
What makes the anti-Black racism of a public figure with lupus especially cruel and harmful is the fact that the disease disproportionately impacts women of color, particularly Black women in the US. I don’t know what O’Connor knew about the medical injustices affecting, literally killing, Black women during her era, perhaps very little. In general, the author’s letters contain almost no acknowledgement of structural problems within the healthcare system; the most O’Connor does is state that there was “no insurance for lupus” which made her “all for Medicare.” To uncritically engage with O’Connor’s words today is to miss important opportunities to center the intersections of race, class, gender and geographic location that shape all of our experiences with chronic illness. Writing this essay in the midst of the coronavirus pandemic and Black Lives Matter protests, I see these opportunities as impossible to miss. This is why we must confront and repudiate O’Connor’s racism, be it in conversations about literature or lupus.
Representation is not the solution to racism or medical injustice. Neither is finding the language to articulate our experiences with illness. And yet both of these are important for our personal and public struggles, our creative writing and our advocacy. Because of this, I continue to search for lupus narratives. I still get excited about excavating even the mention of the disease in an old letter or a short blog post, such as Imani Perry’s piece on living with lupus. My hunger remains. I want more language and more conversation partners to construct my story. My writing longs to be imprinted, but not with just anyone’s words.