From "Writing With and Through Pain" by Sonya Huber:
"It’s an odd thing to continue to show up at the page when the brain and the fingers you bring to the keyboard have changed. Before the daily pain and head-fog of rheumatoid disease, I could sit at my computer and dive headlong into text for hours. Like many writers, I had a quasi-religious attachment to the feeling of jet-fuel production, the clear writing process of my twenties: the silence I required, the brand of pen I chose when I wrote long-hand, those hours when I would sit and pour out words and forget to breathe.
"Then, I thought that my steel-trap focus made for good writing, but I confess that I’m not sure what 'good writing' means anymore. For example, what happens when the fogged writing you thought was sub-par results in your most popular book? ...
"Today I am tired -- despite a full night’s sleep -- merely because I had a busy workday yesterday. I’m actually hungover, in a sense, from standing upright and talking between 9:00 am and 5:00 pm. Before I got sick, I would have declared this day a rare lost cause. But this is the new normal. Now, even the magic of caffeine doesn’t allow me to smash through the pages like I used to. As my body and mind changed, I feared that I would become unhinged from text itself, and from the thinking and insight that text provides. In a way, that did happen. Over the past decade, I have had to remake my contract with sentences and with every step of the writing process. The good thing is that there’s plasticity in that relationship, as long as I am patient.
"I don’t know a lot about neurology, but here’s what it feels like: there’s a higher register, buzzing, logical, and mathematical, in which I could often write when I was at full energy. And then there’s a lower tone, slower and quieter -- my existence these days. The music of the words sounds completely different at this lower register, producing different voices and different shapes, but it still resonates. It requires me to intuit more, to pay much more attention to non-verbal senses and emotional structures and to try to put them into words, rather than to follow the intellectual string of words themselves.
"Although our diseases are very different, I have felt what Floyd Skloot describes in his essay 'Thinking with a Damaged Brain,' in which he traces the ways his thought processes have been altered by the aftermath of a virus that ravaged his attention and memory:
'I must be willing to write slowly, to skip or leave blank spaces where I cannot find words that I seek, compose in fragments and without an overall ordering principle or imposed form. I explore and make discoveries in my writing now, never quite sure where I am going but willing to let things ride and discover later how they all fit together'
"I do work more slowly. Of necessity, I place more faith in Tomorrow Me. When I stop writing, daunted by a place where I’m stuck, my energy plummets and I hand it off, knowing I’ll pick up the challenge on the next session....The dim semaphore through which my sentences arrive today leads to a strange by-product: I have less energy to worry about all the ways in which I might be wrong (though maybe age and confidence have also helped). In plodding along slowly, my voice has become clearer, at least in my own head. This slow writing forces me to make each word count."
Please take the time to read Huber's insightful essay in full (published online at Literary Hub), as this is just a small taste of it. I also recommend her collection Pain Takes Your Keys & Other Essays from a Nervous System, as well as her other fine books.
Some other good pieces on writing with, or about, illness and pain:
"Stephanie Burgis Talks about Snowspelled" (Mary Robinette Kowal's blog)
If you're having trouble with this link, try this url: https://maryrobinettekowal.com/journal/favorite-bit-stephanie-burgis-talks-snowspelled/
"Out of My Mind" by Sarah Perry (The Guardian)
"On the Harmed Body: A Tribute to Hillary Gravendyk" by Diana Arterian (Los Angeles Review of Books)
"On Telling Ugly Stories: Writing with a Chronic Ilnness" by Nafissa Thompson-Spires (The Paris Review)
"Writing & Illness: More Than Metaphor" by Victoria Brownworth (Lambda Literary)
"The Heart-Work: Writing About Trauma as a Subversive Act" by Melissa Febos (Poets & Writers)
My own various writings on illness, posted on this blog, are collected here.
"In order to keep me available to myself," wrote Audre Lord in The Cancer Journals, "and able to concentrate my energies upon the challenges of those worlds through which I move, I must consider what my body means to me. I must also separate those external demands about how I look and feel to others, from what I really want for my own body, and how I feel to my selves."
This is also a challenge for all of us, the sick and the well alike.
Words: The passage above is from "Writing With and Through Pain" by Sonya Huber (Literary Hub, June 25, 2018). The Andre Lorde quote is from The Cancer Journals (Aunt Lute Books, 1980). The poem in the picture captions is from Guts Magazine (November 19, 2015). All rights reserved by the authors. Drawing: "The Little Mermaid" by Helen Stratton (1867-1961). Photographs: A walk on the pebble beach at Budleigh Salterton on the south Devon coast, late summer, with my old friends Ellen Kushner and Delia Sherman, and my husband Howard.