Finding the Words for Chronic Pain

(A Sunday Extra)

Last month, Nadia Gerassimenko posted something beautiful on Substack about living with chronic pain and writing about it:

“Today it’s a relief to have and hold words that give name, sense, and interpretation to living in a painful body, allowing me to better process my experiences, allowing others to better understand what chronic pain embodies.”

This echoes an unexpected gift that the pandemic and its isolation and fear brought me. Since the height of the disaster, I’ve published seventy or so personal essays and more than a few have been about chronic pain.

Early on, my maintenance insomnia was exacerbated by the 24/7 news of mass burials, mobile morgue trucks, the shortage of masks and ventilators—all of it. Daily life had become clouded over by uncertainty, suspicion, and dread? The quotidian was suddenly alien territory: where was it safest to shop for groceries, for instance, and when? Washing my hands became a religion.

I would find myself waking up at 3am not just scared, but in pain from one source or another. Most often it was a migraine—due perhaps to barometric pressure changes—which is a frequent cause for me during a storm—but just as possibly due to stress, to the torrent of bad news.

I would get out of bed as quietly as possible, knowing that I wouldn’t wake up my husband who’s a sound sleeper, but not sure if the dogs would stay asleep in the bedroom, and I’d pad out to my study at the front of the house. It’s a room that Marie Kondo would disapprove of since there are almost two thousand books filling shelves on every wall. They hold memories that are precious, comforting, or just quiet landmarks of a time and place.

There’s a line from the English poet Sir Philip Sidney that I encountered in college which has always stuck with me. It’s in the prologue to a sonnet cycle where he’s not sure what to write, and then—boom!—he experiences a revelation:

"Fool," said my Muse to me, "look in thy heart, and write."

And so I did. One of the first essays I dived into back then was about a hidden disability that completely changed my long years of striving for fitness and to my health club, which had not been designed well if you weren’t a hundred percent.

That led to several essays about suffering with chronic migraines, something I had sought treatment for and that often stopped me in my tracks, sabotaging plans I’d made and sending me to bed in a darkened room. I had the nausea, the dizziness, the light sensitivity that are classic symptoms.

But as the Anglo-Saxon poets put it, at 3am I opened my “word hoard” and memories, thoughts, perceptions, dreams, travels real and imagined swirled around me. Trapped by the pandemic and all its restrictions, I saw my own light not at the end of the tunnel, but inside of it.

Lev Raphael is the prize-winning author of 27 books in genres from memoir to mystery and has been fortunate enough to not only see his work appear in 15 languages but to have it widely anthologized, assigned as homework at numerous universities, and analyzed by professors in articles, conference papers, and books. In recognition of his contribution to American Literature, Michigan State University has bought his literary papers for their library’s Special Archives. He mentors, coaches, and edits writers across genres at writewithoutborders.com and you can contact him there for a free consultation.

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