Whimsy to Advocacy Whiplash
At the beginning of the week, I thought about Alysa Liu and the way she skates as if the ice is something magical beneath her. I found myself fascinated by her story about stepping away from competitive skating and then returning, not because she had unfinished business or a medal-shaped hole in her identity, but because she missed the feeling of it, the play of it, the delight of movement.
What would happen if I approached my own art that way? If I let go of tightly crafting every scene? If I stopped treating every book idea like a financial strategy or an essay on disabled experiences? If, instead, I let it feel like make-believe again, like something invented under trees, like stories inspired by what about this?
Totally possible. And fun again. I could feel the shift in my shoulders.
Then the phone rang.
The appeal was denied. Again.
The device I use to manage chronic lymphedema was denied. I couldn’t reach anyone that night, so I woke up to spend the next two and a half hours on the phone trying to understand what had happened and what, if anything, could still be done. I needed a side path, a secret door, a loophole.
By the end of that call, my impression (fully biased and perhaps flawed but probably not) was that it came down to the numbers.
All about numbers.
That was the phrase that kept echoing in my head afterward, not because I have access to insurance minutiae . The numbers didn’t number.
Measurements matter more than people. That was my impression. I’m still working on next steps talking to my medical team.
My arm requires maintenance. For life. And my hand is numb as heck and equally annoying and no one can figure out why except maybe irritation from lymphatic swelling. But that’s not even in the report (I don’t think, except I sent it so it should be). I have to maintain what sensation I have.
Maintenance is quiet.
Stability does not have dramatic numbers.
Then the next day brought another denial, this one about compression garments. Which has been a struggle for a year and a half, and I found myself once again digging through reports, categories, and guidelines. How did they justify the decision? How could I show them another way? How could I help them help me? How could I be seen?
I called. I left messages. I waited.
Silence.
And somewhere in the middle of all of this, it snowed.
A real snowstorm, the kind that turns the foothills into a softer world with gentle edges and makes the air feel magical. I learned new bureaucratic vocabulary like InterQual 2025. Snow falling while I was thinking in terms of appeals and work-arounds and new ideas.
My rescue dog, Leia, saw snow for the first time in her life and responded with pure astonishment. She ate snowflakes as if they were tiny treats flung from the sky. Leapt like a bunny in snow deeper than her height. Sneezed when she tried smelling the powder all over her Princess-Land aka the backyard.
I filmed her, snow melting on my face. Must-call-for-appeal energy still humming under my skin.
Joy outside.
Advocacy inside.
That was the whiplash.
At the start of the week, I wondered whether I could replace the grind mindset with something closer to whimsy. Could craft and delight coexist without the endless hustle mindset? And, within one day, I was navigating systems that demand attention and detail and a nervous system on alert.
The emotional investment shifted fast.
Not because whimsy was naïve or I didn’t believe it was possible.
The whiplash landed hard because the nervous system recalibrates fast when treatment plans are written by insurance companies. Especially when they care about the numbers more than the people.
Two of my doctors asked, in separate appointments, a version of the same question: why isn’t there someone handling this for you?
Because doctors are busy and I am the ringmaster of the circus that is my glitchy health. No one knows me like I know me.
Where do you get your advocacy from?
Another post for this one. But honestly — stubbornness, and fierce annoyance at authority. And I want to be here.
And I don’t have a choice.
I advocate because the consequences land squarely on me.
And I do not “number the numbers” very well.
I look like a healthy middle-aged person. I speak like an educated, informed patient. I seem to be fine. Except so many things, so so many things, are not fine. Not even close. But those are harder to measure.
By Friday, I was tired in a way that demanded downtime. The kind of tired that drags at thoughts and bones.
I still tried to reach a case manager. Twice. I still show up. I still try.
Today, I’m slightly steadier, and I think about stories again. I wrote maybe three sentences this week. About how I accumulate weeks like this, where joy and denials and snowfall and intense phone calls all occupy the same calendar.
I don’t have an Olympic arc.
There is no medal ceremony waiting at the end of my narrative.
My goal is more gentle and quiet.
I need to keep the candle in the window. For myself and others. Just lit. Softly remembering. Cozy exists. And we are not numbers.
Perhaps that’s what a little magic looks like when your life fills with ongoing illness, legal stuff, and surprise snowstorms during bureaucratic outrage.
I won’t replace the grind with glitter.
But I also won’t let the light go out just because the numbers didn’t number.
Leia will absolutely frolic in the snow again.
I will absolutely light the candle.
For now, that is enough.
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