Why I Write Poems About Living with MS
I went to bed last night with a poetry book (Spikeseed by Jalina Mhyana).1 When I set it down and turned out the light, my mind freed words that swirled into new poems of my own until my heartlight winked out and I fell asleep.
Today I woke with ambitious plans. I need to put copies of my new book in the mail to fulfill orders. The flowerbeds beg for weeding. Some perennial bulbs arrived and demand planting. If there’s time, I want to bake scones.
And there are so many poems to write.
Now it’s 10:30 am and I’m still not outside, nor have I packed and shipped those books. Baking scones? Probably not going to happen.
But maybe I’ll write some poems. After all, April 2021 is the 25th anniversary of National Poetry Month.2
Living with MS consumes energy in ways only people with chronic illness understand. Not just physical energy—sometimes it’s creative energy.
The drive to write poetry
The drive to write poetry about living with MS continues even though I’ve just published a whole book specifically about this.
As I made coffee this morning, I realized I’ve written more poetry since my MS diagnosis eight years ago than I have at any time before.
I asked myself: Why poetry? And more specifically: Why poetry about MS?
1. Poetry is short
On those days when cognitive fog wants to capture my brain in a state of creative lockdown, the fact of poetry’s brevity brings me relief. I can see the ends of poems even before I write them.
When I sit down to write a poem, I know I’ll find my way to something complete (if imperfect) in one sitting.
I swear, a different part of my brain lights up when I write a poem. And when it’s over, I feel accomplished, even on the crummiest MS days.
2. Poetry is an escape hatch
On a day like today, when the eyes blur, the ears ring, speaking takes effort, and muscles twitch, writing a poem gives me easy access to an interior space I can enter to block out MS lassitude.
There are no vacations from chronic illness. MS will stick to me like a second shadow for the remainder of my life. That doesn’t mean I should only live in shade. Poetry lets me open up a different space and enjoy psychic “sunlight.”
3. Writing poetry is accessible
I can write a poem anywhere, at any time, with or without a computer. This is no small thing in a world where access is an issue for people living with chronic illness, injury, or disability.
When MS strikes, poetry etched into a journal with a favorite pen, or entered into a new blank document on my laptop, is pure barrier-free pleasure.
Chronic illness delivers enough obstacles in life; finding easy ways to do things I love may literally be the only liberation from MS I access on some days.
4. Poetry about MS is therapeutic
Living with chronic illness leaves me immersed in a maelstrom of unwanted sensations on the daily. Having a way through these realities is necessary for good mental health.
I’ve always believed, even before diagnosis, that taking negative or difficult emotions and using their energy productively is key. Poetry (for me) is a quick and easy way to achieve that.
There’s something powerful about capturing raw emotions on the page. By putting them there, I feel lighter somehow. Like the bad guys are now in jail and I can relax in my safety.
5. Poetry serves the community
You may recall Amanda Gorman’s “The Hill We Climb,” recited at the Biden Inauguration last January.3 Her words took us on a journey, illuminating the ways we can be better citizens.
People with chronic illness always need solutions and ideas for living their best lives. So do healthy people, who may not recognize or understand the pain, dysfunction, and unpredictability we experience every moment of every day.
I’m no Amanda Gorman, but that doesn’t mean my poems can’t also strive to serve the community in some way. I don’t expect praise or sympathy when I write them: I simply want to be a truthteller.
Any time I hear from a reader that one of my poems resonated with them, or revealed an unseen reality, or articulated the unspoken nightmares of treatment side effects, or left them feeling less alone, I’m grateful I’ve shared my wordwork with the community.
It's not purely selfless, by the way. Not only does this connection feed them, but it feeds me as well.
Happy National Poetry Month!
May reading (or writing!) poetry bring you a sense of belonging, awareness, empowerment, exuberance, liberation, and ease this month and always.
Does your employer provide workplace accommodations due to your MS?