She was only 39 years old and had disseminated lupus erythematosus since her mids. A descendant of an old prominent southern family, she is now in her 80s. When she died, Flannery left a legacy of short stories, essays, and novels. One of the novels, Wise Blood , was recently developed into a film and is currently playing. Coles R.
Coronavirus Resource Center. Our website uses cookies to enhance your experience. By continuing to use our site, or clicking "Continue," you are agreeing to our Cookie Policy Continue. Twitter Facebook. This Issue. The irony was that I was already desperate to meet another person with lupus, even in the context of literary history. 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.
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. She got to live 12 years with the disease. Would I get more or fewer? 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. She makes appearances in books for patients. I wanted proof of a twin wound and a model for mending it. 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. I felt that I had to. 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. 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. Those studies leaned heavily on her biography and personal writings, whetting my appetite for the nonfictional stuff. From the publication of Wise Blood onward, she begrudged the camera lens, even as she allowed it on her property, a two-story farmhouse edged by a dense forest of loblolly pine, sycamore, oak and poplar trees.
Photographers arrived occasionally, from Atlanta or New York, to capture the author at her typewriter or communing with the peacocks she raised. The subject has been batted about by critics, who cite her prematurely aged face and aluminum crutches as origins of her grotesque fiction.
Others have engaged in revisionary commentary. In , the U. He argued that another image would have better represented the author on postage: one she had painted herself. My daddy said I was a different breed of dog from my brothers and sisters. Then and for some time after, I avoided being photographed.
I escaped to the parking lot behind my office building to get out of a group portrait, the purpose of which I never learned; I ignored the woman from human resources who asked me to provide a headshot for a staff database.
Eventually, she arrived at my desk with an iPhone and got her picture. Photographic proof of the Christmas I spent in Nevis, in , does not exist, and, maybe because my memory is most often jogged by pictures, I barely recall being there. Avoiding cameras coincided with a conscious altering of my overall aesthetic.
Though mainstream feminism has often ignored her work, she has earned praise for her lack of vanity, for her unwillingness to compromise by. Sweating under a wig in rural Georgia? Bumbling around her farm without her glasses? Perhaps her country life aided her sense of humor in protecting her esteem. When visitors did arrive with cameras, perhaps she did not feel as alien as some people assume she must have. I did ultimately receive a diagnosis, in the spring of This is why the disorder can be difficult to detect.
It is chronic but somewhat manageable with medication. My relief upon receiving this news was marred by a feeling of ridiculousness. I was too embarrassed to tell him that. I began taking the medication and lopped my hair to my ears.
Five years after discovering the banality of my affliction, I maintain my simple, unfeminine wardrobe. I have trained myself to resist complaining on days when I feel tired or wake up hollow-eyed or monitor an angry flush ascending my neck or tracing the claw of my ribcage. But watching my body mutate from my perception of myself, had felt like a big deal. When my phantom illness found a name, I found myself unable to say it. The disease and its accompanying symptoms aligned with my physical experience, but the diagnosis somehow felt insufficient.
My disease was not serious.
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