There’s this thing people say sometimes when I write about my brain recovery that hops around my mind these days. They say it has given them context for people in their own lives climbing similar barriers.
I think about this often because I am writing these experiences out for me, and my doctors, as selfishly as possible. The last few days have been a blur to me, and tracing back through my writings and texts, I was able to see what I noticed but did not fully process as symptoms. The woozy yawns at the beginning of my celebrations with Donny, where normally I would be bright and alert. The loss of appetite that had me turning away from a bag of snacks he packed for me, and turning down a breakfast burrito the next morning. The moment during a recorded interview where I realized that if I didn’t look directly at the host, I couldn’t clearly see him. The walk with my roommate to the pharmacy where the peripheral vision finally completely faded and the ear-poppings started with enough intensity that I had to have him lead me home as if I were a puppy. And then the headaches, and then a helicopter flew over our building and I watched the shadows dance in circles, completely charmed. Charmed until they stopped and I felt a bit dizzy. A bit dizzy till it was a lot dizzy, till it was a day fighting to keep the minimum I’d been eating in my stomach, till it was a day of having to crawl to wherever I absolutely needed to go.
And then today I woke up bright. No dizziness. No ear popping. No sound overload. No nausea. And faded, but existent peripheral vision. I clicked over to the NanoPoblano facebook group and noticed a thumbnail from Dean Kealy who is doing a series for this month on Instagram. In three posts, in three stages, he completes a painting. Except the last time I really saw anything, he was in the middle of The Weekend and this photo was the second step of Billie Eilish, and though I’d definitely clicked on posts in between, I must have been in a different state. I had lost some time.
In my mind, I was unexpectedly sick for a few hours yesterday. In reality, I faded down into that over a period of days.
And the reality of my situation is that this is likely to happen again, and maybe has happened before, and I will only ever remember because of these little logs I leave all over the internet and phone messages. Which is why I write about these things.
I wonder what I would write if I were to write about StrokeBrain for others.
I think about what I would want others to know if I could have prepped people in my life for this. I think about what I would want them to know now.
I think about embarrassment. I wonder if people know how mortifying most of these experiences are. I find humor in them, but I also spent a huge portion of my time incarcerated laughing. I laugh because it is in me to be delighted by things, not because things are necessarily delightful. I find poetry in my experiences, but this is a similar thing. It is in me to think of everything as a story unfolding. I read deeper than I need to.
But neither stops the sinking feeling of embarrassment.
When I tell the waiter I cannot read on the days I can’t, and their face falls in pity, I am embarrassed. I find myself not explaining the strokes out of some kind of strange solidarity with those who are illiterate for any other reason. I cannot read, I say. I will need some help. They say your stomach lining blushes with your face, and though my skin is too dark to show any pink, I feel it blossom in my belly. I hold their gaze, gently and with gratitude, and I am always met with patient assistance.
It’s more embarrassing when I try to struggle through without saying anything.
At the beginning, when I didn’t know about my loss of peripheral vision, I screamed so loudly at a man coming out of a manhole that he almost slipped back in. You’d have thought I saw space aliens for all the shock in my yelp. He was kind, patient, reminded me to stop telling strange men that I can’t really see and I get easily confused. Told me he had a daughter my age and smiled, but I could see the gratitude in comparison pop into his eyes. She is healthy, thank goodness.
I am not. How… sad?
Now when I see him, repairing lights or other things on our street, I smile and wave, and he grins back, and I am a garden of pink in my stomach lining. This is a man I almost killed with my histrionics, because I was hoping I could walk alone without help and I couldn’t.
Currently in my recovery, the nerves in my body have good days and bad ones. Sometimes my hand just shakes whatever is in it out of it, with a startling velocity.
Imagine a nice hotel room, shutters opening out directly to the beach. Sunlight is pouring in and I’m in a golden dress for my birthday, and Donny wheels in a table full of fancy dining. I smile and the water bottle in my hand goes ricocheting across the bedside table and knocks everything down.
Imagine a roommate who is precious about his collections. I work in front of a shelf of records, some valuable, some only valuable to his memories. I ask him if he’d like some of what I’m baking and as he turns to look at me, I take a full glass of water and throw it at the shelf.
We’re all lucky my drink of choice is water, and though neither situation ruffled my people, I was lining-blushed, sad and pink. It’s hard to just lift your chin up after something like that and go on. You want to apologize. You want to help. You want to be angry, to be sad, to have it have a direct reason, and — all your wants don’t really matter because this is just life now. This is life for, very realistically, maybe forever.
If the people in your life struggling with brain issues are abrupt, if they’re suddenly not interested in doing things they used to love, consider how much of life has been painted pink for them, too. If you feel a distance, between them and you, or them and anything else, just realize that sometimes you can feel pretty far from life even while living.
Brain injuries change personalities, preferences, and abilities in one swoop. It isn’t like my hip injury where I could look down and say “Ah, this is a fractured bone, and so I will not be able to do this list of things.”
No, this is different. It has been over a year. Every day I find something I cannot do, or cannot do as well, or can no longer do with love.
Most days I feel like I wear a mask for this particularly, and though it is my hope it eases the world that so carefully holds me, it doesn’t do a thing for me.
The mask says, “I’ll figure this out”, but behind it, I am always in a cornfield maze with no idea as to what’s the right way. I’m not even sure how I keep getting back in here.
I do my jobs, write my posts, bake my food, volunteer, take my pictures, laugh, mail tiny rubber chickens to my friends, and all kinds of normal life stuff– but some part of me is always lost. And so, so embarrassed that I can’t even find my way back to me.
And though it is human nature to want to proclaim it isn’t forever, here’s the truth, mask-less and blush-less:
It could be.
Some of these changes could just be me now.
That’s quite literally how brains work. They reshape as needed. They playdoh to our world. Most of the time these things are gradual and you don’t see them happening. These, I time-traveled to, and now I am learning what is a maze and what is my inner world, and what are my power ups and capabilities in either.
I sit with that everyday, and I invite you to sit with it, too. For me, and everyone else you love who is facing similar cornfield walls.
(Recently I was very grateful to get some orders from my new little shop, and I wrote some thank you notes to those who ordered. Y’all, it looked like they were written by a goblin pretending to be the human it just stole, ha! Mortifying, but I believe in thankfulness no matter how shakily it might be written.)