There is a person in a house.
They haven't left their house for,
let's say, ten years.
You ask them how they are
and they smile and wink at you and,
slowly,
hold their hand up in a peace sign.
It is dark in their room, unless they want it not to be.
It is never too hot in their room, and never too cold.
They are in control.
They haven't had to talk to an abled person in ten years.
This is a wild fantasy, so let's say
their internet connection is never slow
and their phone never needs charging.
They have their social life to hand
whenever they want it.
People care so much about access
that they haven't needed to leave their house
even once in those ten years.
They can pick up their phone
and have anything they want
delivered right to their room: food, books,
mobility aids, healthcare (by disabled people, for disabled people).
Money has been rendered obsolete and therefore
presents no barrier.
They live in a society that not only
remembers they exist but actively works with them
to make sure they continue existing.
This is where my suspension of disbelief
always breaks down.
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.
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.
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.
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.
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.
Of course you ran.
How else could you have visited so many hearts?
You ran, we watched.
You ran, we cheered you on.
You ran, we ran with you:
We drew, wrote, built communities alongside you.
We run, so you will never truly stop.
Run, Helli.
