Writing Poetry About AS: How and Why It Helps
I'm not sure if you know this, dear reader, but my background is in poetry! I got a Master's degree in writing (yes, I do have regrets), I've published several books of poetry, and I lead writing and poetry-as-healing workshops. So, in a way, despite the *crippling* debt I face, I have a very interesting life of art and literature, and I wouldn't change it for the world.
What writing made room for
My love of writing has allowed me to be a part of this community and this site! Living with a chronic illness means existing, to some extent, in a sort ghastly vacuum — of silence, invisibility, and exhaustion. So, when I read your words and speak with you all, it changes me.
Writing may not stop the pain from shooting from my back down my legs, but it sure does make me feel less alone. It also reminds me that there are hundreds — or thousands! — of people who are compassionate, caring, and helpful. And that sort of makes a real, true difference.
When it all began
I started writing poetry about AS before I was officially diagnosed with it. In grad school, around 2011, I started having serious AS symptoms. I was in and out of the doctor's office with recurring bouts of uveitis. I was experiencing wild levels of exhaustion that weren't simply due to being a writer for a penchant for late nights and red wine. And my back freaking hurt. I was only 25, but my back hurt! A lot.
Because of the tiredness, I couldn't focus. So, I'd do things like show up late to school or work. And because of my eye inflammation, I'd keep my eyes closed in halogen-lit classrooms, or show up with beet-red eyes, unable to really look at the lines of poetry we were reading. It sucked. I felt alone, weird, sick but unable to prove it (this was before I had doctors who would test me for anything; they continually suggested I ate poorly and used contacts too much — rather than testing me for a disease).
So I wrote poems. In fact, I wrote my whole entire graduate thesis on how I was feeling. I felt like my eyes were waging war against me. I felt like I was not myself anymore. For a while, I stopped writing poems about it. I think I associated that time with shame and exhaustion and frustration, and the topic left me feeling more alone. Angrier.
Returning to art
But these days, I'm coming back to it. Because I believe that writing can help us unlock those rooms in our minds — those rooms with the doors shut and the pain, bleeding through the windows. Those rooms where we also keep our strength and our resilience and our gratitude. When we write, we let our minds breath. We let ourselves see ourselves.
Here is one that I recently wrote (and posted to Instagram):
kneel before this body, spine fire. disease of divinity.
unmoving, quiet, incurable. flora, oh this body decrepit.
vertebrae, this sea, eternally mine. wilted upon the shore,
clawing toward morning. in me a tree.
root twisted by years of body tired
body trauma body left body lost body tired.
the sickness sings in climates of dark. pew of myself,
angel of these hands of this blood,
i ask of you to absolve me today.
pain is the garden expanding, pain, the divine mouth.
Also, I recently rounded up some poems by poets writing about chronic illness, and while not all of them have to do with AS strictly, I think they will help give voice and acknowledgment to the sort of thing we're all going through on a regular basis.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?