How I crawled out of hell (fluffy edition)
Take a little luxury lifeline out of misery—but don't fall for the trap I did
Here’s something that seems wild to me now:
10 years ago, pre-disability, when my therapist asked what I felt grateful for, I honest-to-God spat out:
“Nothing.”
And I damn well meant it.
I had a ski pass, hiking buds, a kickass business, and a capital-C CHEAP apartment in an otherwise expensive gorgeous mountain town.
Didn’t matter. All the soggy wrong in my brain snuffed out any potential spark of gratitude. Gram had just died a brutal death. I’d broken up with my best friend AND my boyfriend. Climate change loomed; clearly we were careening towards The Road. Paralyzing perfectionism made impossible to ever feel like I wasn’t about to fuck up everything. Everything inexplicably hurt. Everything felt hard. Just like it always had.
And that was before I blew out my neck and never skiied, power-cleaned, or took a real walk again.
Despite my ugly-feeling truth, my therapist reassured me I was not a spoiled brat.
Our brains pay attention to negativity to keep us alive, she said. We’re wired to perceive danger, deal with it, shake it off, and move on.
Some people are so sensitive, though, they sense and monitor a LOT of bad, far beyond what one human can manage. One simply does not “shake off” the imminent end of civilization. (Or undiagnosed craniocervical instability.)
I thought this pervasive sense of ACK was just normal. And it is, for many sickies of my ilk. Maybe we’re the evolutionary Pomeranians, faintly hearing danger first and yapping to protect the village. Maybe our unsolvable symptoms have tyrannized us for so long, our brains have fritzed into perma-tortured mode.
Regardless, we’re well aware of EVERYTHING that’s wrong.
And in my case, breathtakingly clueless as to what’s going right.
My therapist suggested I “attune” to tiny things that felt slightly better.
I didn’t see how noticing the fuzzy texture on her sofa blanket could possibly make up even slightly for watching Gram die.
But my compulsive pain science research said that intentionally logging pleasant things could counteract pain, flicking the proverbial “off” switch in a brain that might just be shrieking like a faulty car alarm.
Desperate for relief (and wildly misunderstanding the assignment), I covered every seated surface in my house in fuzzy blankets. I similarly smothered my body’s screams of protest, skiing and hiking and workaholicing through teeth-gritting, bone-aching “gratitude.” I attuned to the trees, the sky, the scent of earth and snow. I did not attune to myself in the slightest.
My neck went out so spectacularly the misalignment broke my back molars in half.
You can send all the “safety messages” to yourself you want, but if you’re continuing to backcountry ski through a shitpile of pain on top of undiagnosed EDS, something’s gotta give. Like your neck ligaments.
There was NUANCE to this whole “attune to something good” thing, lost on overachievery me. The point was never to deny my reality—it was to bring the good in alongside the bad. You’re supposed to attune to both yourself AND the good thing. (Heh. Whoops. Sorry, ligaments.)
It was an “and.” Gram died; I hated that. AND I could admit I found the couch throw satisfyingly fuzzy.
Holding both things in one breath felt both pointless and impossible. And that was before the neck blowout. After? The pain was nothing like I’d experienced before, and its unending, contentless blare overtook my entire brain and then some.
I gave up trying to NOTICE nice things happening (too hard), and started just making nice things happen to give myself something to notice (this time, without the self-gaslighting).
I’d been a dyed-in-the-Army-Surplus-wool cheapass. But deep in agony cave, I started treating myself to undeniable frivolities.
A cute mousepad. A $4.99 bunch of tulips. Nail polish. Microwaveable booties. Instead of getting the cheapest option of whatever I was buying, I’d get the prettiest. And then I noticed the warm flush of appreciation I felt when I saw it. Without dismissing the sense I’d washed my undies in hot sauce (a fun MCAS symptom).
When my head screeched, I scrubbed walnut shell powder, lotion, and peppermint oil over my feet in the sink. Then my head screeched AND my feet felt spa-like. Progress?
When my brain Jell-O’d, I’d find a wildflower patch to sit in, dizzily. Then my brain derped AND my eyes and nose delighted. Maybe I felt a lil spark of gratitude?
Getting to the coffeeshop was an Olympic feat, but I made myself do it. Daily. There, I would pause over the first sip of an Americano. I’d been drinking coffee since I was 14, but I’d never before truly lingered over the steam wisps, the crema, the chocolate-bitter tones. I felt horrific. AND it was the best part of my day. My happy coffee huffs gave me the oomph to stay and work for a short bit, migraine and all.
It started as an effort, turned into a habit, and then, the good things started popping up everywhere.
It took FOREVER, but I gradually clocked the good things just out and waiting in the world.
I migrained, AND the birds chirped charmingly.
I bloated three sizes, AND that lady’s makeup looked fire.
My body filled with acid, AND the pine trees waved friendly hellos.
Over years, the focus flipped.
I laughed with my bestie, AND my shoulders crunched.
I soaked in a luxuriant bath bomb, AND my stomach protested.
I typed this sentence, sitting at a sunny picnic table by a frozen pond, warmed by a heated vest and blanket, my boyfriend’s hand on my hip, working side by side on our laptops like yuppie dweebs…AND my back hollered “how ‘bout surgery?” before my body treated me to a two hour die-in-the-bathroom sesh.
The good became the default. The danger became the add-on. And when it wasn’t all bad, I could actually do some good.
The pain is still really effing loud. But the good is co-hollering, now.
I wish the good cancelled out the agony. It doesn’t.
But bringing in the good means I can do something past me couldn’t: enjoy the oases of fluffery deeply enough to face going back out into the storm.
And despite the storm (in my brain, in my bones, in my guts, in my country, in my planet) I feel very, very grateful.
When I go to bed at night, now, I thank the Universe that my mom and dad and sister and brother and bestie and partner are alive. I thank Jebus for a warm place to live, with t-shirt sheets and deep quiet and a heating pad wrapped around my butt. These are the things I had before and couldn’t appreciate when my therapist asked. Now I feel unforced gratitude for them deep in my bones.
Sometimes my brain takes a pre-sleep grateful tour of my friends and community, but usually, looong before I get around for my appreciation for cocoa butter and silk scrunchies and good knives and secondhand Christmas lights and fresh toothbrush heads (thank you to my sweet friend Erik for those), I fall asleep.
Soundly. Pain, rumbleguts, fuzzy jammies, and all.
I’m curious: what little luxury helps you feel 1% better? Please comment!
SNEAK PREVIEW!! The Meatscon Scale
Why answer emotionally invasive questions like “how are you” when you can just grumble out a number?
We’ll discuss this more later, but I threw together an editable table so you can have your OWN pain/fatigue/malaise scale. It outlines YOUR personal “1-10” simply and effectively, so you and your peeps know in an instant what kind of day it is.
It’s pay what you want (including ZERO. If you love it and decide to support later, you can always smash my Venmo kira-stoops.)
This has been a super handy way for me to make decisions about my day, and an easy shorthand for conveying my status to my supportive BF and BFF.
Free money, TAKE IT:
• Get $100 when you open a new Ally account using this link. (Gives me $50, too.) You do need to do three deposits, no minimum. I’m so mad no one told me about high yield savings until I was nearly 40. (One reader said it worked on desktop, not on phone…heads up!)
• Get a $200 bonus (and then up to 3% cash back forever) on a no-fee card with American Express with this link. (I get $75.) Hot tip: go through their “special offers” to really load up on cash backs. I use Amex for both business and personal.
• Take $60 off a Liberty Trike like mine with this link (I think it gives me $60, too?) For the cheapest deal, get the “Classic” (aka, old, aka, mine) model or a refurb.
• Take $10 off Instacart (and give me $10 too!) with this code: KSTOOPS109C5. (My hot tip for good Instacart service: tip above 15%!)
Free newsletter, TAKE IT (but support is welcome, too!)
Imperfect Working Order is free for now! (Possibly forever, can’t say I’m doing this super intentionally.) If you’re stirred to support and have the means, please consider fulfilling my wildest pillowcase protector dreams on MyRegistry. I’m also saving up to swing my now-off-insurance ME/CFS doctor + therapist appointments via Venmo (kira-stoops).
You can also just comment, or even better, comment to another commenter below! I’d love to see a community of sickies spring forth here.
Big time gratitude in advance.
My garden was the game changer for me. After cancer (plus chronic illness plus muscular dystrophy) I started noticing the little things like the robin outside my window bopping around from twig to twig, or the pure joy of a good conversation with a loved one. But my flower garden switched that conversation for me so completely. The flower garden and the nausea. The dahlias and the migraine. The sunflowers and the crippling fatigue.
Love this article, my friend. Per usual. 💗
I bought a set of very pretty coffee mugs during covid in an effort to cheer up my mornings and take great joy in choosing one daily.