How to Crawl Out of a Black Hole: A Practice

A dispatch from the edge of functioning

Content note: Chronic illness, pain, disability, mental health, medical trauma.

I’m in it currently.
Writing this is a struggle, to say the least.

How to describe a flare-up? 
The pain seems like the least of it, really. 
It’s where the pain leads you, down a path of no return. 
A hopeless place. A depth of despair. A dissociation. An inability to motivate.

Edvard Munch, Norwegian (Loiten, Norway 1863 - 1944 Ekely, Norway) - Woman’s Head against the Shore

I knew as soon as I woke up today that it wasn’t going to be good. 
I slept until 10:30 AM, and it took everything in me to get out of bed. 

Over the night, I had a hard time sleeping because of my hip pain (due to both labra, the cartilage in my hip joints, being torn). Sometimes they ache for days at a time.

At some point, when I got up to use the toilet, I ran forehead-first into a hard tile wall. Me running into things in the night (or day, let’s be honest) is not uncommon. I have hEDS and POTS, the former leaving me with unstable joints due to connective tissue problems, and the latter a circulation issue that makes me prone to heart-racing lightheadedness when changing positions (i.e., standing from sitting or lying down). All that to say, I usually need to hold onto the wall at night when I get up to go to the restroom. 

After this unexpected face impact, I had an even harder time sleeping, as my head pounded terribly when I lay back down.

So this morning, when I woke to a flare-up, it wasn’t really a surprise.

Writing from the edge takes energy I don’t always have.
If this piece gave you something, your support helps me keep going—10% at a time.

A therapist I had a few years ago, when I first hit my health rock bottom, told me I should have a list (or ideally a physical box) ready of things that help my flare-ups by just 10%. It doesn’t sound like much, but sometimes 10% is the difference between hopelessness and getting by. 

As far as accessibility goes, sometimes even getting out of bed to retrieve these things feels impossible, especially when you know they don’t always help. But making a box you leave within arm’s reach on a day when you feel okay can be an incredible gift to a future you who you know will be struggling.

Some of my own personal 10% things are: getting into bed fully under the covers, extra-strength Tylenol (I like the 8hr Extended Release one) & ibuprofen, ice packs or an electric heating pad, snuggling my dog, Loop earplugs, vegan ice cream treats and vegan pastries, spooning with my partner, electrolytes (I really like the Recess Mood Powder), the permission to do nothing the rest of the day, a bath, texting with a kind friend, comfort TV.

So when I woke up this morning feeling terrible, I dutifully did some of my 10% things first. I took my ibuprofen, iced my aching hips, and put some food in my belly despite the nausea from the pain.

Now I sit in what I call my autism cave. It’s actually a very small bed (just under a US twin size) that we’ve set up in my studio/office. I bought a pretty floral piece of fabric from Etsy. My partner

Cam

installed a curtain rod into the ceiling above it, and we hung the fabric like a canopy over the bed, creating a delightful sensory cocoon.

Photos from my autism cave

Most days, I leave the fabric open, tucked along the sides of the bed frame. But it’s a full-closure kind of day today, so I have the canopy shut, peacefully enveloping in here.

Honestly, despite the struggle each word is, writing about it helps. I should add that to my 10% list. Community like this, even just digitally, helps.

I’m allowing the emotions to exit my body onto this page. 
The terror of wondering if this is it, if I’ll ever recover. 
The anger at the injustice of chronic illness and disability while my peers around me succeed in their careers and travel and do fun summer things. 
The endless well of sorrow that makes me feel helpless like a small child again.

I have to admit, I’m not entirely sure–especially in these depths–where this piece should go. 
How to tie a black hole up in a bow?

I guess the only real thing I can share about how to crawl out of the darkness is that it doesn’t happen all at once.
You’re not suddenly cured.
It happens by increments so small, it probably feels like they’re not helping at all.
It happens 10% by 10%.
It happens so slowly, you might not even notice.

But then you look up from your bed toward the tiny pocket of light streaming through the curtains as they gently blow in the wind.
And you realize: I do want to live.

That light is small, but it’s mine.

What’s one thing in your own 10% toolkit, something small that helps you stay?
Or if you’re in the black hole right now, what would you want future-you to leave within arm’s reach?

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