Trigger & Content Warnings
Content warnings: seizures, loss of consciousness, emergency medical care, hospitalization, medical testing, medication side effects, grief, disability, caregiver dynamics, emotional distress.
Please take care of yourself while reading. Skipping sections is always allowed.
Welcome Back to the Cryptid’s Den
Welcome back to The Crippled Cryptid, where disability, chronic illness, service dogs, and everyday sorcery all gather under the same soft lamp like friendly ghosts trading stories.
If you’re new here: hi, I’m Sky.
Professional cryptid.
Unwilling amateur cyborg.
Medically interesting enough to make half my providers sigh when they open my chart. Truthfully, I sigh too.
I live in a haunted meat-suit with a questionable warranty.
If you’re returning: welcome home.
If you’re new here:
Welcome to the Lunatic Café. On today’s menu, Gushers. Unfortunately, not the sour ones, but in a moment like this, they’ll do.
A friend messaged me on Facebook last night. They’ve been reading my posts and wanted to know how I’ve been doing.
I tried to be honest.
The problem is that honesty gets complicated when you’re thirty years old, it’s Christmastime, and you’ve been sentenced to Bed Jail™ by your partner and your service dog. You’re allowed out on good behavior, meaning phone calls with Walgreens about whether your seizure meds will be delivered, or setting up what feels like the two-hundredth doctor’s appointment this week.
Meanwhile, the rest of the world is jingling.
Christmas markets. Shopping bags. Festive photos. Life continuing at full volume.
In my corner of the woods, things are quieter. Darker.
Anything too happy or too sad makes me dizzy. My body doesn’t seem to know the difference anymore. Strong emotions flip a switch and suddenly the world tilts, spins, and sometimes drops me straight onto the floor.
That’s when I come back to myself staring at the ceiling. M&M and the Yard Yeti hovering nearby, asking if I know where I am. Asking if I know who I am. M&M on the phone with paramedics. And then strangers in uniforms asking if I’m ready to go to the hospital.
This is my reality right now.
The Medical Context (Or: Why My Body Is Doing This)
We don’t know what’s causing the seizures yet.
Right now, the working theory is messy and incomplete. My cardiologist suspects I may be blacking out before the seizures due to POTS, which could be triggering what comes next. Neurology is investigating whether the seizures are epileptic, non-epileptic, autonomic, or something deeply annoying and rare that will take months to name. (But we hope it won’t take that long.)
So far, the plan looks like this:
- A 5-day wearable heart monitor scheduled for the 29th
- A PET scan next month on the 21st
- An echocardiogram after that in February
- An upcoming EEG, with electrodes glued to my scalp for a minimum of three days (still waiting on scheduling.)
I am trying to be brave about all of it.
I am also deeply offended by the idea of electro-goo anywhere near my hair during the holidays.
Add in the fact that we don’t have a car right now, I don’t really have gifts for anyone, and my body feels like it’s constantly bracing for impact, and you get the picture.
The Part That Actually Scares Me
Here’s the part I keep circling without landing.
I’m scared.
Not in a vague, abstract way. Not in a “this is stressful but I’ll be fine” way.
I’m scared of the not knowing.
I’m scared of the moment right before a seizure, when my body feels wrong and I can’t tell if I have seconds or minutes or no time at all. I’m scared of waking up on the floor. I’m scared of how calm everyone around me has learned to sound when they’re actually panicking.
I’m scared of the testing. The waiting. The appointments that might give us answers, or might just send us back to the beginning of the maze with a polite shrug.
I’m scared of how many strangers have seen me at my most vulnerable lately.
And I’m scared of the conversations that are starting to happen because of all this.
M&M has gently brought up the idea of bringing my wheelchair with us more often when we leave the house. Not because she wants to limit me, but because she wants me safe. Because she loves me. Because she’s thinking five steps ahead, the way caregivers learn to do.
That conversation scared me more than I expected.
Not because I think wheelchairs are bad, tragic, or a failure. I know better than that. I’ve known better than that for a long time.
It scared me because it makes everything feel more real.
Because we don’t have a car right now. Because accessible transportation is expensive, unreliable, or nonexistent. Because Uber XL costs more and shows up less often. Because regular Ubers frequently won’t accommodate a wheelchair at all. Because despite it being illegal, many drivers in the U.S. still refuse to transport service dogs, leaving us stranded or scrambling.
It scared me because suddenly my world feels smaller. Not emotionally, but logistically. And logistics are often the sharpest edge of disability.
I don’t want to need contingency plans just to leave the house.
I don’t want my partner calculating risk every time we talk about going somewhere.
I don’t want to have to choose between safety and living my life.
I want to go to Christmas markets. I want to visit family. I want to wander museums, go to events, and exist in the world without my nervous system pulling the fire alarm.
Bed Jail™ has its perks. Snacks. TV. Time curled up with my partner and my very snuggly Service Dingo.
But I don’t want my life to shrink down to a mattress and a watchlist.
I want to live.
And right now, the scariest part is not knowing how much of that I’ll have to fight for.
Grief, Guilt, and Christmas Without Bear
I keep worrying that I’m ruining my family’s first Christmas without Bear.
That everyone will remember this one as the year I was sick.
The wires.
The bruises.
The medications and the side effects that wouldn’t leave.
That this will be the Christmas people associate with exhaustion and hospital lighting instead of warmth.
Grief does that. Illness does that. They tag-team your brain when you’re already down.
Luna, Bed Jail™, and the Inability to Sit Still
Luna is being an absolute professional through all of this.
She alerts before heart rate spikes. Before migraines. Before seizures. She does her job with the seriousness of someone who understands exactly how high the stakes are.
Even so, she can only do so much.
And we don’t speak dog.
Sometimes I think that even if we did, she’d just be telling me, “Mama, go lay your ass down.” Or, “Sit your ass down.”
The problem is that I don’t sit well.
If I’m left alone with boredom, pain, anxiety, and the strange internal weather of my body, my brain panics. I start looking for something to do. Something to clean. Dishes. Laundry. A speck of dirt that may or may not exist.
If that fails, I cook.
This is, unfortunately, forbidden by the Yard Yeti.
Every time I try, BJ appears to ask if I’m “allowed” to be cooking. I know it’s his way of checking on me, but I still don’t love it. Especially because he doesn’t cook. He could burn water. I fear for my good pots.
So yes. I cook.
For everyone’s safety. And the structural integrity of the house.
Usefulness, Caretaking, and Old Wiring
I know. I understand. My worth is not measured by productivity.
I might even believe that.
But, I also grew up taking care of people.
I helped care for my grandfather until he died in 2005. Then I helped care for my chronically ill and disabled mother. When she passed, I found a note asking me to take care of my little brother.
I’ve been doing that since 2020.
So even when I’m sick. Even when I’m exhausted. I get up. I clean. I cook. I do what I can.
BJ handles the outside. Trash day. Lawn. Maintenance. He’s good at that.
I’m good at inside.
I’m good at cooking.
I’m good at cleaning.
My body is just not good at behaving itself.
Especially not lately.
And M&M handles me.
The People Who Hold Me Up
M&M watches over me with a patience I do not deserve. I push back. Hard. I’m still learning how to be taken care of.
She is a saint.
We absolutely need more M&M appreciation posts.
We probably need more Yard Yeti appreciation posts too.
And definitely more appreciation for M&M’s Aunt Lise, who sends Quebecois recipes and makes food bank days lighter. The kind of person whose phone calls make the world hurt less when you hang up.
Between them, my aunt in Texas, and the people who show up quietly and consistently, I sometimes think I have the best support system in the world.
Even when my nervous system is doing its best impression of a haunted house.
Thank you for being here. Thank you for reading. And thank you for holding space for me while we figure this out together.
© The Crippled Cryptid- Disability, honesty, and a little chaos. https://linktr.ee/skylanarissa
There is absolutely zero pressure to donate, but sharing or reading means the world to us. Support Sky’s Journey to Health and Mobility https://www.gofundme.com/f/support-skys-journey-to-health-and-mobility
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