A collection of poetry and other writing about chronic illness and more.
You know when you get a song stuck in your head? I can hear that. I can hear everyone's earworms. Sometimes I hear the pleasant lilt of a piano sonata, and sometimes I'm awoken by the first bars of a theme tune over and over. I avoid crowds because the discordant cacophony becomes overwhelming. You want to know the weird thing, though? You two are always in tune.
Content note: mild horror, food
You are awake in the middle of the night again.
You turn over in bed, again. As you do so you spot a light in the shadows in the corner of your room. You could swear it looked like an eye.
You try to stay calm. It was probably just a trick of the light.
You stay very still. Maybe if you act like you're already asleep you'll trick your body into falling asleep for real.
The shadow in the corner of your room blinks at you.
You: > run away screaming. > whisper “hello”. > find something sharp to throw at it.
The side door of the hotel opened as Starlight approached, and they slipped inside. They were replaying their catastrophic day at work in their mind, so caught up in their thoughts that it took them a moment to notice that Home's lobby was empty.
Home had set its overhead lights to Starlight's favourite colour, and the soft green hue reflected off its furniture and polished floor. The door clicked shut behind them and green arrows appeared on the floor tiles. Before following the path Home had laid out for them, they took a moment to press a hand to its wall.
“Thank you, beloved,” they whispered.
The lights overhead danced.
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.
They ran down the lake path, the sounds of metal against dirt echoing in the still night. They shielded the silver creation in their hands as best they could, aware that it couldn't function out of water for long. The robotic fish was only a toy, not intended to last more than a year, but when they'd found it floating belly up in its aquarium, they'd gathered every spare part they could find and worked through the night to repair their pet. They reached the water and knelt, submerging the fish. It lay still in their hands, and they were convinced they had failed until one fin flickered, moonlight gleaming on the metal scales. Slowly, the fish awoke and, once fully powered on, swam into the depths of the lake. They watched until the fish left the range of their infrared sensors, their circuits humming with joy.
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
