Category: disability

Pillow-deep in Grey

In my head
Behind my eyes
I’m on the moon
Jumping, flying

In my bed
I fertilise
A field of dreams
Multiplying

But here they stay
My heart, my hopes, my wedding day
And here they fade away
And leave me pillow-deep in grey

I have been
A hundred girls
A hundred times
Fantasizing

I was going
To change the world
To claim the stars
Electrifying

But here I’ll be
No care, no cause, no cure for me
I’m nobody
Held hostage by this lack of energy

And I wander through the night
And I wander through the ocean
And all the dark places in my head
But I never leave my bed

In my head
Behind my eyes
I’m on the moon
Jumping, flying

In my bed
I fertilise
A field of dreams
Multiplying

But here they stay
My heart, my hopes, my wedding day
And here they fade away
And leave me pillow-deep

I’m fading away
I’m nurturing my personal private doomsday
And my heart, my hopes
Are pillow-deep in grey

—Sarah Stanton

Why OCD Makes Social Media Hard

(Image description available on original tweet.)

In case you’re wondering,

That cute little post about my Christmas decorations took me three days to make. One to take an obsessive amount of photos (and you know when I use that term I mean it), one to agonise over which photos to post, and one to actually edit and post them. I spent around 5 hours editing yesterday, OCD building in me with every breath. Yes, it takes me 5 hours to edit 3 photos in Instagram. I had to make sure the photos were symmetrical, that they were “perfectly” edited (including photoshopping out a barely-visible cup stain), that I really had chosen the right combination of photos–in short, that there was nothing “wrong” with them, no tiny mistakes that might make people hate me, which is what my OCD thinks will happen if I am less than perfect. I am already going through a major C-PTSD flashback, and with the OCD on top (fun fact: OCD is actually a survival mechanism my brain developed to cope with C-PTSD) I can easily get stuck in a loop.

It’s hard to describe OCD, but I say it feels like a tooth loose in the world. You know when you have a loose baby tooth, and your whole mouth feels kind of wrong because of it, but you just can’t leave it alone? And even though you know it’s bad for you, you’re compelled to wiggle it until it comes free? OCD is like that. It’s severe distress because a photo is a few pixels off symmetrical. It’s hours revising a single tweet because the words just don’t feel “right”. It’s days spent editing a Facebook post because an imperfection would mean the end of the world. Even this post has taken most of a day to write; has been agonised over, perfectionised, extruded out of me painfully and slowly to comply with all the irrational demands my brain forces me into. Writing is a torturous process for everyone, but OCD kicks that into high gear.

It’s important to me that people know this isn’t easy. Social media is like permanent exposure therapy for me. I know nobody will REALLY hate me because I make a typo or a photo is a tiny bit off centre. But my brain is very good at convincing me they will. I love sharing the way I do–as a bedbound person, it makes me feel like part of the world–but after that day, when I screamed and sobbed for hours over three small pictures, I want to be honest about how much it takes out of me. Anything you have ever seen me post has been dragged out of me like it was my guts. It actively hurts me to do it. But I’m compelled to do it, again and again, because this is how I feel seen. I could have just not posted those photos. I could have given myself a break. But I don’t want OCD to make me more invisible than I am.

Bedbound Meditation #1

Grow flowers in the garden of your bed with your mind. I know you’re not really in a garden. I know you sweated through your sheets yesterday and you spilt soup on your pillow last week and you’re still too exhausted to clean it. But today we’re going to make it a garden, because you are beautiful, and you deserve gardens.

Close your eyes. They were probably already closed, but–close them. Feel yourself from the tip of your scalp to your toes. Give those toes a wiggle, if you can. If you can’t, imagine giving them a wiggle. Feel them dig down into the squirmy earth and come up gloriously dirty. Not the dirt of a month without showering, but the dirt of living in the world. Build the loam up in your mind; it’s good earth, and you get out of it what you put in. So make it rich, caked with nutrients, aching for seed. Make it ready for the world you are about to summon out of it.

Now for the flowers. I like sunflowers, geraniums and star lilies, but you do you. Lift your hand, or imagine lifting your hand, and let the seeds spill down onto the earth of your bed. I like chaos, a riot of colour blooming around me like it were growing out of my grave, but your garden should always, always be what you like best. You can add a little fertilizer, a little rain. I’m sure you know deep down inside what will make your flowers bloom.

And now lie back. Or, you know. Stay lying back. But either way, relax. And listen to them grow.

Because this is the secret of your body. It doesn’t have to be up and doing. Even the deep ache of a sick life can make a garden grow. Those flowers are called Hope. Self-compassion. Resilience. Significance. Worth. And you have been growing them every day since you took to your bed. All we are doing now is putting faces to them.

I’m picturing you now. Arms outstretched like a queen. Hair splayed out at wild angles. Sick. Hurting. You haven’t sat up in a week. But your bed, ah, your bed. You are sailing on a sea of flowers. You grew them. You built this garden up out of the hardest soil. And even in the smallest, most hopeless hours, they will never, ever leave you.