I was the only one sobbing at Bellevue Literary Review‘s AWP panel.
He stood up at the podium with his wife and read in a deadpan voice, sometimes struggling to get out the end of the line. His wife stood next to him and I didn’t know if it was to help him along with the reading, or to help him stand– or even if he needed or wanted any of these things. But I guess in this case, needing and wanting really are two different things. Sirowitz read poems, and it seemed planned that his wife would finish his lines or sometimes she started the lines and he would finish them. His wife, composed, smiled at his humor.
I chose to sit near the front so I could quickly thank the poetry editor after for publishing my poem in their prior issue, but I ended up staring at the presenters, wiping snot from my upper lip, imagining that they looked at me strangely. Mortified, I left immediately.
I’ve written two poems about Multiple Sclerosis. I’ve written essays that I don’t really care for about the disease–essays that feel too self-deprecating or too self-pitying or too removed. So, I try to work the disease in other ways. When a peripheral character in a story needs a disease, I give them MS, and then I make them really tired all the time, or I make them walk with a cane, or I make them die.
What else should I do with these characters? How should I write a protagonist, a mother, who has MS? What else should be in her life besides her disease and her family?
Bellevue held another panel at AWP: “In Sickness and In Health: Literature at the Intersection of Medicine, Science, and the Arts,” where I teared up, but didn’t sob.
I took notes.
Sure, the title of the panel sounds clinical. But that was the rub–how something so intensely personal like disease, something that makes itself so much a part of the body that we sometimes don’t even recognize we have it, can steal away the most human aspects of ourselves. So much time in the panel was discussing how “medical-ese” takes the primal, human, messy parts of disease and sterilizes those parts into vocabulary terms that the patient can’t understand without a medical dictionary.
So I went to the human side when researching the history of MS for this novella. I am determined to explore it in a way that lets me control its every appearance, though not my character’s. I suppose that I should be an entirely different being from my character.
I read mostly archival news articles from the 40s through the 70s. I wanted to know what the public knew about the disease then, to understand how little was understood.
From the Toledo Blade, June 12, 1947: “Patients suffering from the ‘brutal’ and always fatal disease, multiple sclerosis, are getting an answer to their plea, ‘Why doesn’t someone do something about this disease?'”
I thought about this. When I was diagnosed, my friend told me it was a “trendy” disease. As much as I didn’t understand the diagnosis, I didn’t understand what my friend meant. Benign? Fashionable? Cool? Preferable?
I re-read the line: “brutal and always fatal.” My great-uncle Tony had MS, and in his time, I wonder, was he devastated in ways I couldn’t know? The disease isn’t thought of as “fatal” anymore. Hardly even “brutal”–at least less-so–for people diagnosed today. Though there are days I might describe it as “brutal” (certainly episodes of vertigo), I’d feel too guilty to use that term. There are days I don’t feel diseased at all.
From reading his poetry, it’s clear Hal Sirowitz is living his disease–I imagine he feels the steady decline with every one of his senses. I’m sure he can tell when disease is taking his life from him because he might find something he used to do that he can no longer do. His poetry tracks disease, treats it as fact, but still prods at the unknowing, bravely looks it in the face. Even if the face with that disease is his.
The most common word associated with MS in the old news articles is “mysterious.” And I get that. Doctors and scientists didn’t know what caused it, how to fix it, how people could be either unable to walk or walking just fine, or how–the scary part, still–to predict its course. It is mysterious.
Dare I call it like I see it, how it presents itself in my life? A nuisance? A ghost? A threat?
Even though some articles refer to it as “a crippler?” Because sometimes, it is.
I’ll write into the mystery of it. And it’s still a mystery to me how to do that…even as I finish this blog post that I wrote to make sense of writing and illness. Of story and disease.
–a poignant essay by Rafael Campo, “Illness as Muse,” from Bellevue.