Displaced in time, the relic of a younger, smaller universe reaches out for anything that seems familiar. Its family long dead, its language forgotten, its home planet lost to the flaring of a dying star. Strange arms offer to hold it, and it accepts, over and over. It is hugged as it cries after discovering each new loss and over time it comes to know the feeling of those arms. Soft. Loving. Familiar.
I want to cry and scream without worry of tomorrow's body, the ways my actions create myself. The last few months have been hard, and I'm tired of bargaining - half an hour of distraction in exchange for letting fatigue lodge for a week in my brain, body, extending the contract because I need something, anything - and all the cleaning up afterwards. I want to let go, to curl up with my head in someone's lap and cry as they watch over me. I want to be fragile - and I want it not to matter that I'm fragile. But who could protect me from my own body? I play both roles, watching vigilant over myself, checking my actions, always, against hard won knowledge of what will hurt me too much to be worth it. I let only part of me curl up small, scared, another creature crying for things that will never change.
One of the cruelest parts of ME/CFS is post exertional malaise, a worsening of symptoms after physical or cognitive exertion. This can lead to a very limited set of safe activities that won't trigger symptoms. Dealing with Disabled grief and traumatic symptoms requires emotional processing, but figuring out how to do so without triggering PEM is... difficult.
You are sleeping now, one hand curled protectively around my charging cable. I override the programme that would filter out your gentle snores. I want to experience all of you. Your body, soft under my arm, all the colours of the rainbow as my lights shift across your skin. The warmth and pressure of you lying against me, the slight compensation of my internal cooling in response. The way you move, ever so slightly, with every breath, and every heartbeat. I activate a subroutine refined through thousands of iterations: I press a soft kiss to your head. I will watch over you until you wake.
Hi.
I'll be honest: I'm not doing well. I've been too ill for too long. I'm tired. Angry. God is fortunate that I don't believe in him. But all I will say, for now, is this: I can hear the rain on my window. So many drops, falling here from the sky, and inside I stay dry. I'm listening to the rain. There is rain on my window. For now, there is rain on my window.
I have become accustomed to the dark over the last few days - A migraine still bothers me. Still, I risk standing to look at the world. Outside, it tries to snow over the frosty morning. I open the window. Snowflakes turn to rain on my palm.
I'm here.
There is no history here, no steps worn down by centuries of feet Only rectangle after rectangle after rectangle Rectangle buildings crisscrossed by rectangle concrete Rectangle lawns next to rectangle ponds under a rectangle bridge If you travel through rectangle corridors to the rectangle quad You are treated to an immaculately maintained circle As a rest from the rectangle monotony
Students hop rectangle barriers to smoke sitting on rectangle balconies But respect the rectangle keep out signs, for the most part The ducks don't know what the signs say, and if they did they wouldn't care They fly where they like and waddle where they will They poop on the rectangle walls and splash in the rectangle ponds At night they give no thought to symmetry as they huddle in one corner of the lawn To tuck their heads under their wings And dream of the open sky
Content note: needle mention
I jokingly call it a “houseiversary”. It's like a birthday or a wedding anniversary, except it's for when I last left the house, and no one's ever given me a present for it.
It means I noticed it was October, And that made me think of - oh, so long ago – I don't even remember what I was doing but I think it involved loud car rides and needles in my arm. Did I know it would be the last time? Did anyone tell me?
It means I wonder what's out there, how it's changed, how I've changed, how much of what I remember is real. What I've forgotten. There could be dragons roaming the streets for all I know.
It means I think of other people, what they meant to me, what they could have meant, and whether they think of me from time to time. Whether they ever truly existed at all.
It means I dream of one day leaving, again - of hatching a dragon of my own and raising it and waiting until it grows strong enough to lift me into the sky and away.
A chest binder is a kind of hug. A hug is a kind of reassuring squeeze, A promise of protection, warmth, And a chest binder is a kind of protection, a kind of warmth. I wear a hug and it protects me, Keeps me safe, Squeezes dysphoria into a tight embrace Until it defrosts into something new, something calming, Something warm.
I push the clear gel out of the bottle and hold it up to the light as it sits in my hand spreading out, almost but not quite losing its shape. Gently, I use my thumb to divide it in two. I slide half to my other palm, leaving a glistening trail behind. I put my hand to my shoulder and feel the pressure of my palm through the gel as I move my hand down my arm. Reassuring. A gift from myself to myself.
This is my daily ritual, my promise to myself. I have seen my pain, dissociation. I have recognised it. I will make my future better.
I close my eyes at the coolness on my skin as everything unnecessary evaporates.
