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an appalachian woman living with chronic pain
From the moment I wake up, I feel like I’m trying to run but stuck in deep water, my limbs heavy and stiff. Everything pulls and pops, screaming louder and louder until I can finally push through and get out of bed. As I wait for my pain meds to kick in, I make a cup of coffee and sit for two hours until my body is calm and docile, finally slowing its wild antics.
When I take the Corgis to the dog park in the afternoon, Gwen pulls so fast that my finger joints can’t keep up, and I feel a pop. Resting again in the living room, I wear layers of socks to try to keep my feet from burning from lack of circulation. On good days I go to the gym and push through my creaking joints to exercise to try to regain my strength. On bad days, I curl up under my collection of fuzzy blankets and watch an endless number of TV shows.
After months of worsening pain, I finally decided to take the plunge and ask about new treatment options. So this week, I met my rheumatologist for our quarterly meeting to plan out my care. I’ve seen dozens of doctors over the course of my life, and Dr. Golden (as I will call him) is one of my favorites. From the moment he appears on the screen, Dr. Golden gives me his hesitant, reassuring smile. As I explain that my pain management medication is no longer working, he listens intently.
“So what’s hurting now?” he asks.
“Everything. Everything hurts. Always.”
As a kid, I didn’t realize that reading shouldn’t make your head hurt until you cry. I kept pushing through my migraines because I thought that everyone else seemed to be handling their pain with such ease. In high school, it wasn’t until I was diagnosed with a laundry list of food allergies that I realized that people’s digestive organs aren’t supposed to constantly feel like they’re on fire.
Folks who haven’t lived through the never-ending marathon of decades of pain management might wonder how someone can be in so much pain and not realize it. But when you’re born with pain, it never crosses your mind that your experience might be different than the norm. You just grit your teeth and get it done.
I wish I could sufficiently describe how I exist in the world, how anything brushing against my body hurts, including my clothes. When anyone touches me, my body protests as if that person has just jabbed a bruise. I swallow liters of ice cold water to cool down my insides while a rotating series of ice packs numbs my neck. Everything pulses, red and angry with inflammation.
In the chronically ill world, we measure our lives by the spoon theory, an idea that people only have so many units of energy in a day—which are represented by spoons—and chronically ill folks have fewer spoons than most. But at this point in my life, instead of spoons, I plan my to-do list by how much pain I’ll be in by the time I’ve finished.
Living with chronic pain feels like trying to concentrate on a task while an enraged person stands beside you, roaring like a drill sergeant. To cope, I’ve learned to mask my pain, to only scream internally. Unless they know me well, few people understand the deep costs of chronic pain. But if you look closely enough, my eyes always give me away.
Unlike most people when they hear about my chronic pain, Dr. Golden didn’t look at me with pity, sadness, or horror. His brow furrowed as he asked what I’d tried before, what worked, and what didn’t. He listened to the conclusions other doctors have made and then began walking me through my options. While he didn’t have an answer for me, he treated me like an equal partner in my healthcare. Together, we’d find a solution that was best for me.
Even trying to end this essay, the instinct to try put a positive spin on it so I don’t make people uncomfortable when they read it clatters at the edge of my brain. Nondisabled people can’t handle this, it says. You’ll upset them! But I’m too tired to create soft landings for others when I’ve already shattered on unforgiving ground.
I’ve given up on completely getting rid of my pain. It’s now a permanent part of my everyday life. However, I still hope to find new solution that will make me feel like I’m part of comings and goings of the world, not just a sidelined bystander. The solution won’t be easy, whatever it is, but I’ll give it shot. Life is worth it.
Podcasts I’ve Been Listening To
Debutiful - Neema Avashia - Another Appalachia
I’ve been listening to every new interview with Neema Avashia that I can find, so I was delighted when I saw that she was on Debutiful.
Appodlachia - #121: Kentucky New Deal (with Charles Booker)
Charles Booker, the founder of the Hood to the Holler project, is running for the US Senate in Kentucky. This interview is a fabulous update on his campaign.
Things I Made That Went Up This Week
Live Show with Neema Avashia, Author of Another Appalachia
Over on Book Riot
For Women’s History Month, I curated a list of must-read nonfiction books by women.
This week, I also wrote about some of my favorite nonfiction audiobooks.
Book Riot’s Audiobooks Newsletter
What I’ve Been Watching
The Dropout (Hulu)
I’ve literally been counting down the days until this mini series releases. After reading Bad Blood: Secrets and Lies in a Silicon Valley Startup, I’ve read everything I can find about Elizabeth Holmes and her company Theranos. I’m a sucker for a train wreck.
Midnight Mass (Netflix)
I’m possibly the last person to get on the bandwagon, but I’m quite enthusiastic about it. This weird, sinister fairytale of a series follows a small town whose priest falls ill, so the church sends a new priest, but he seems a little… off. Brilliant characterization and storytelling.
The Gilded Age (HBO)
From the creators of Downton Abbey, The Gilded Age is a new take on rich people problems, but set in 1880s New York City. The costumes are the true star of this series, drawing the eye in every scene. The series starts when a young woman finds herself alone after her father dies. She’s taken in by her rich aunt, throwing her into the world of the richest people in the country.
Somebody Somewhere (HBO)
Sam, a middle aged white woman, returns to her hometown to care for her dying sister. After her sister passes away, Sam feels adrift, not sure where her life is going. But when a co-worker invites her to “Choir Practice,” a gathering of misfits that help her feel more at home. I love a small-town show, but this one has an intense amount of heart.
I’ve already seen this mini series twice, but I’m rewatching it with my spouse. It’s such an incredible work of historical fiction, bringing together themes around truth and the stories we tell. I bought several books about the disaster after I first watched the series. Now I may actually read them. ha!