8 March, 1964
Me, I just got out of the hospital where I had my middle entered by the surgeons. It was all a howling success from their point of view and one of them is going to write it up for a doctor magazine as you usually don't cut folks with lupus.
Flannery O'Connor, the Southern American novelist, was diagnosed with "disseminated lupus erythematosus" in 1950. She was twenty-five. Her life divided itself into two parts, according to William Sessions, Regent's Professor of English Emeritus at Georgia State University, and a friend of the O'Connors. Sessions describes lupus as "an incurable death dealing disease... that is, her body was killing itself. The self was, without her will, committing suicide. She could do nothing. Her freedom, as a living human being could do nothing, hurtling through space and time toward annihilation."
Having spent a few years writing and traveling between New York and Connecticut, O'Connor returned to Milledgeville at Christmas, 1949, to resolve the first of her health problems, an operation to correct a floating kidney, or in her words: "I have to go to the hospital Friday and have a kidney hung on a rib." Within a year of this operation, O'Connor was informed that she was dying of lupus. She was debilitated both by high fevers and the treatments employed by her doctor, Arthur J. Merrill, to save her life. Once discharged, and still believing she was suffering from an earlier misdiagnosis of rheumatoid arthritis, she began a strict salt free, milk free diet, and ACTH by inoculation, which she learnt to administer herself. Above all, she believed this was a temporary ordeal in spite of the doctors. She was on cortisone, which counters the powerful desire of a lupus patient to stay in bed. Throughout she continued to work on her novel Wise Blood.
The editor of O'Connor's letters collected in The Habit of Being, Sally Fitzgerald, describes lupus as "a dangerous disease of metabolic origin—incurable but controllable by steroid drugs—which exhausts the energies of its victims and necessitates an extremely careful and restricted life."
Incurable. That word, repeated twice, like a tolling bell. O'Connor was born on March 25, the Day of Annunciation; the proximity of a cathedral opposite the family home provided a tolling bell every fifteen minutes of her childhood.
Fitzgerald’s description perfectly defines the disease as I engage with it today, in 2016. O’Connor is not the most sympathetic of writers, her fictional work presents complicated barriers of race and religion for the modern reader; she herself knew that "most people think of (these) stories as hard, hopeless and brutal," but in her letters I find the echo of my own voice, my frustrations at the lassitude of a society, medical or otherwise, that stubbornly continues to disengage with the seriousness of lupus.
At the instance of my own diagnosis in 1997, I was a victim of that social ignorance. When the words, 'You have something called SLE, Systemic Lupus Erythematosus, but a very mild version, you won't even notice it, no need to panic" were uttered, neither my parents nor I second guessed the manner in which my diagnosis was delivered nor the advice that immediately followed the delivery. "Go on holiday," waved my cheery immunology consultant, the one who always referred to me as "this charming girl."
"Enjoy yourself," he said. "Start the hydroxychloroquine when you start university. I don’t expect to see you back here."
We trusted the deliverer of this news. He had become a particular friend. We accepted the words as though they formed a parcel we had been expecting all along, and trooped out of the office with much shaking of hands and cheerful farewells.
Ironically, unlike my own state of ignorance at point of diagnosis, lupus was a known quantity to the young O’Connor. Her father, a post war survivor, one of those men who belonged in Gertrude Stein's opinion to the 'lost generation', had been diagnosed with lupus in 1937, had died of the disease in 1941. Ten years after her father’s death, O’Connor returned to her mother, and to Andalusia, the ancestral farm in Milledgeville, Georgia, where she outlived the doctors’ prophecy of her own death by eleven years. Perhaps knowing it was a killer, her father's death providing incontrovertible proof, she rarely had to face the bracing advice and encouragement of the healthy that a lupus patient, or any chronic illness patient, is usually obliged to endure. Or perhaps she did, as this letter dated April 4th, 1951 reveals: "Now I am at home again and not receiving any more awful cards that say to a dear sick friend, in verse what's worse. Now I shoot myself with ACTH once daily and look very well and do nothing that I can get out of doing."
In the months leading up to her death from lupus, O’Connor’s letters are both moving and snippy, a snark displayed by another favorite writer of mine, Eva Ibbotson, in an interview conducted towards the end of her life. Ibbotson was diagnosed with lupus in her seventies, and as with O’Connor, any interference in their writing lives, including or especially interviews, was regarded with a growl. Perhaps writers are naturally grouchy beings, living isolated, hermit lives as we do. To add a sprawling beast of an autoimmune illness into the literary equation is bound to tip us over the edge.
At twenty-three, O’Connor was perfectly capable of flooring a patronizing publisher with a courteous but steely letter when he proposed to "work with her" to "change the direction" of her first book. The publisher later complained in a note to her former teacher Paul Engle, that O'Connor suffered from "hardening of the arteries of cooperative sense"—an extraordinary term, but a quality I wish I possessed. Unfortunately I have found one has little choice but to loosen the arteries of cooperative sense when dealing with doctors.
8 June, 1964
I am still here—into the 3rd week. I had a transfusion Sareday & another Sunday. I don't get any information out of them that I particularly understand but then I'd have to study medicine if I wanted to keep up with myself. I don't know if I'm making progress or if there's any to be made. Let's hope they are learning something anyhow.
16 June, 1964
I asked [the doctor] today when I could go home. Well, he says, we can begin to think about it now. Well, you begin, says I, I been thinking about it all the time. So we are beginning to think about it.
The first mention of lupus vulgaris referred to a malignant ulceration destroying the nose or face. The disease resembled the attack of a wolf. Wolf bite. Today the term lupus vulgaris is obsolete; the "malignant ulceration" actually refers to cutaneous tuberculosis—a condition totally unrelated to lupus. In the 1840's the Viennese physician Ferdinand von Hebra described a distinctive rash "mainly on the face, on the cheeks and nose in a distribution not dissimilar to a butterfly." From wolf bite to butterfly wings: is it any wonder that the lupus patient is an abstraction of chaos?
In 1851, Pierre Cazenave combined lupus, the Latin word already in existence, with a Greek-rooted French word, erythemateux—"lupus characterized by redness." Later, erythemateux was Latinized to erythematosus. And finally, since the condition visibly affected various other parts of the body—"disseminated," then "systemic" prefixed "lupus erythematosus." A weighty term, but the reduction of systemic lupus erythematosus to lupus is not necessarily helpful in explaining how the disease feels, or how the lupus patient must cope with her life sentence.
How does it feel? Like there's an animal inside of me. Or I am animal.
I'll be sitting in the car with my sweet parents in the front, my mother mildly describing the quaintly dressed woman on the other side of the road for my father's amusement, or both of them discussing the recent antics of their grandchildren, and I, at the back, strapped in for safety, am growing claws, thirsting for blood, red eyed and frantic. A contained fury, I grit and grip my teeth and curl my claws into my palms and breathe into the hell.
They are no fools, these sweet parents of mine. They have lived with this wolf-child-woman for as long as I have, and they know exactly what to do.
They neither invite the wolf to speak nor deny him the right to spit and hiss. Him? Her? It is a genderless beast.
Carl Horner, Professor of American Literature at Florida University, is one of the few academics who has made a direct connection between the killing violence of SLE and the metaphorical significance of violent, self-contradictory characters like the murdering Misfit in "A Good Man Is Hard To Find."
O'Connor claimed all her stories were "about the action of grace on a character who is not very willing to support it." It seems to me, reading O'Connor's letters, that she herself lived, or attempted to live, in a state of grace.
Once she accepted her destiny, she embraced it, employing a phrase by the French philosopher and Jesuit priest, Pierre Teilhard de Chardin—"passive diminishment"—to serenely accept whatever afflictions or loss she was unable to change.
I, on the other hand, living as I do in a time of self-help, raw vegan food goddesses and Balinese yoga retreats, am less easily able to be content with the life of a sick writer. Not a day, not a year goes by, without feelings of failure, certain that I have taken the wrong path at every crossroads. I have also lived with or near my parents throughout the course of my disease—the added burden of glaucoma diagnosed within a year of my lupus diagnosis ensuring that I have a double vulnerability, a double need of my mother's strength, comfort and solid reassurance that I am loved no matter what. But I try, like O'Connor, to believe that as long as 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 as a blessing."
The years have taught me to cling to one thing—the voice in my head that is translating the experience into language. The words themselves are not the solution, it is the knowledge that my future self's fingers can scribe with pen, will type into the whiteness, the blankness, the beautiful blackness of letters, a poem. A line. My own. Or perhaps belonging to some other animal-soul in terror.
We borrow language from each other. We remember stories, punchlines, moralities and also that there are no punchlines, moralities, endings. It goes on. This is how I go on. The words. Writing. The sharp tearing and through the slit, a memory of something pure, neither human nor animal, but natural. An instinct. Survival.
24 June, 1964
I've had four blood transfusions in the last month. The trouble is mostly kidneys—they don't refine poisons out of the proteins & therefore you don't make blood like you should or you lose it like you shouldn't or something. As far as I am concerned, as long as I can get at that typewriter, I have enough. They expect me to improve, or so they say. I expect anything that happens...
A month after that last entry, O’Connor was dead. She hated the disease because it interfered with her writing, but she wrote right up until her death on August 3, 1964. She was 39. I hope that I will live beyond that age but a life with lupus is as unpredictable now as it was then.
Photography by Jay Leviton, taken at O'Connor's family home of "Andalusia" in Milledgeville, Georgia, 1962
Dibner, R. M.D. (1994). Lupus Handbook for Women. New York: Fireside.
O’Connor, F. (1980). The Habit of Being: Letters of Flannery O’Connor. S. Fitzgerald (ed.). New York: Vintage-Random House.
O’Connor, F. (1971). ‘A Good Man is Hard to Find’. Flannery O’Connor: The Complete Stories. New York: Farrar. 11-29.
TICenter (2013) It Takes a Story to Make a Story: Flannery O’Connor’s Life and Imagination. Available at:https://www.youtube.com/watch?v=pLe4ZLnhdVs [Accessed: 30 March, 2016].
YaleCourses (2008) 3. Flannery O’Connor, Wise Blood. Available at: https://www.youtube.com/watch?v=PjplQUPhES4 [Accessed: 30 March, 2016].
Shaista Tayabali is a poet living and writing in Cambridge, England. She was diagnosed with Systemic Lupus Erythematosus in 1997, and has since combined a life of illness with a life of letters. She is a recent graduate of a Creative Writing MA programme, and is completing her memoir on living with lupus.