Somehow spring is around the corner. Or maybe autumn, or another winter - I'm no longer sure how to tell. And maybe I mean, instead of “corner”, an endless slope that I find myself rolling down with nothing to grab onto, nowhere to anchor myself. Adrift in time as it carries on bouncing past around me.
It's cold and I don't have warm clothes but I don't mind. I'll step back inside soon. Lie down. It's a clear morning, sun just hitting the top of the neighbour's roof. The birds flying overhead are lit up from underneath. I wasn't here last year, and I might not be here next year, but this year, today, I can stand outside and watch the sun rise.
Content note: UK politics, ableism, transmisia
The headlines of precisely how and their stated reasoning - the exact euphemisms for ableism and transmisia and how it's all so necessary - coalesce into a huge, sticky, amorphous blob that seems impossible to fight. I'm sorry. I feel like a failure for not being able to find a way to keep everyone safe from here in my bed. I wish I was something more than one small sick queer trying to stick their body and mind back together with no tools. Yet I think this is the best thing I can be when so many people want me to stop.
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.
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.
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.
Content notes: internalised ableism mention, food mention
I've been thinking, recently, about relationship anarchy and Disabledness.
Thinking about what relationships could look like when we toss all the rules for what they should look like out of the window.
Thinking about society's expectation that we must be closer with our romantic partners than with our friends. Relationship anarchy rejects the idea that this is a necessary part of life, and instead enables us to choose the type of relationship that we and our friends or partners are comfortable with.
Usually, what we mean by this is that friends can be as close and valued as romantic partners typically are. Could it mean more casual romantic relationships, too?
“I can only spend 5 minutes a day on you, at the very most. Less if I have to wash my hair.” Does that have to imply a casual relationship, or can that be thrown out along with “relationships have to involve sex” and “you can only love one person at a time”?
How am I supposed to know, when there's only one allowed mould for relationships and that mould was built by and for abled people?
Thinking about what relationships could look like when we build them from the ground up specifically around our own Disabled wants and needs.
What would a relationship built around my wants and needs as a person who has very few spoons for socialising look like?
Thinking about asynchronous communication, or communication without the need for an immediate response. Letters, emails, and various social media to varying degrees, for example.
What might asynchronous dating look like?
Imagine getting biscuits specially tailored to your food intolerances in the post, and lying down to eat them and read your datemate's latest email and think about all of the things you love about them, and knowing that they don't expect you to reply until you're ready.
Imagine writing down the list you made in your head, of all the things you love about them, and sending snippets to them throughout the day.
Imagine reading a book together, in little 5 minute segments, and sending them texts filled with exclamation marks a week later.
Imagine a game of chess. One move every day, accompanied by flirtatiously taunting messages. Do abled people's dates go on for months? Do they know they're missing out?
I suppose what I'm trying to say here is that I've been undoing the threads of internalised ableism that tell me it's impossible for someone like me to be a desirable partner. Imagining a future that I want. And I'll be honest, I'm still not sure what that might look like. But I want to find out.
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.
Sleep disturbance Unrefreshed sleep:e.g. awaken feeling exhausted regardless of duration of sleep, day‐time sleepiness -Myalgic Encephalomyelitis International Consensus Criteria
In my dreams I fly. In my dreams school takes place at the top of an endless staircase. In my dreams I meet a girl and we kiss under the stars. We have no need of words. In my dreams I swim laps of a pool as the water slowly rises. In my dreams I fail to teleport. I cannot get the hang of shifting my surroundings around me so I run instead. In my dreams I am in the middle of a busy crowd of strangers and I remember I am sick. I remember I need rest. In my dreams I do not rest.
How does it feel? This -I gesture vaguely to my last half-decade - is normal now. This is what everyone's going through. This isn't what anyone else is going through at all. How are you doing? Are you okay? Our world isn't built for this. Staying at home. Why didn't you put supports in place when it was just us sick people? I want to cackle as you find out first hand that housebound doesn't mean sitting around watching TV all day. I envy you for your ability to watch TV at all. Thank you for the free resources. I hope they help thousands of people. Why weren't they there before. Over the years I've slowly, thoughtfully, desperately discovered how to cope. I want to teach you all of my coping strategies. My coping strategies aren't for you. I want to listen while you vent about how hard it is for you. What's your problem? It'll only be for a year or two at most. You can still do everything except go out, so what are you complaining about? I want to cup your face in my hands and tell you, softly, that it'll be alright. That it's not so bad living like this. I want to smugly proclaim “see? It's terrible living like this”. I want to sit you down and make you sign a legal document promising you won't forget about me when this is all over*. *for you I want to care for you. I want you to care about me.
I’m having a lot of feelings about watching abled people respond to covid. Not just the way some people are making it extremely obvious whose lives they feel are worth living, but also their response to social distancing measures. Things that society, as a whole, didn’t care about pre-lockdown (when they were only happening to disabled people) are suddenly A Big Deal. I saw an article about the government being deeply concerned about the mental health effects of being confined to the house for extended periods, which was incredibly weird as someone who has been housebound for 3 years. This poem was an attempt to capture my confusing and often contradictory feelings about the whole situation.