I’m writing this on the 5th of February, 2025, at 11:35pm. I’ve noticed that our bin has been put out… but not our next door neighbours.
Now, if it was a few months ago, despite how late it was, I’d have slid on some shoes, moseyed over to my neighbour’s bin, and hauled it up the drive myself. Now, I feel unable to.
Nothing happened physically- I’ve still got all my limbs in working order and full control over my muscles. That’s the first thing they check for, when someone sees a GP with my symptoms. But, since November, putting the bin out would result in me screaming and grunting like both the victim and the perpetrator of a murder.
Not what you’d like to hear on a residential street near midnight.
Oh dear.
I’ve been diagnosed with Tics. They are near constant when I try and do anything anymore- walking, doing chores; my face is contorting even typing these words.
Everything I’ve read about tics seems to point to most folks being able to lead a regular life despite them. For whatever reason, it’s leaving me in a state of total exhaustion both physically and mentally. Usually, I’d be able to guarantee being able to deliver work to a client, despite my ADHD. Now, I’m hardly getting anything done at all, and I hate myself for it.
On being disabled:
I’ve been disabled since I was 17. I smashed my head real hard against a car roof on the day of my Nana’s funeral, due another car running a red light right into us. I have incredibly spotty memory of the day, but I’ve had a lot of difficulties since then recalling and processing some kinds of information.
That, all in all, is fine. Most people are very forgiving when you need a refresher on who they are (even if you’ve known them all of their life, sorry cousin Ellie), and getting lost in a large enough building usually summons security to get you where you need to go. This is stuff that’s in my access rider, and I don’t put much thought into having a brain injury beyond that.
See, a TBI is a hidden disability. You’ve got to advocate for yourself as a disabled person to get the accommodations you need. Tics, my tics especially, is a very visible and loud disability, and they suck desperately. I don’t get to pick and choose who gets to know I’m disabled and how other people react is literally impossible to control.
So like, reading this, there’s a lotta internalised ableism that needs unpacking. That’s fine. It’s a privilege to not have to think about disability, so now there’s learning to be done.
Self-love is something you have to learn, too.
So it pisses me off!
It pisses me off that I have all these skills, that I was having a wonderful time as a poet, that things were looking on the up for bringing my boyfriend into the country. Having to hit pause on everything, tell everyone you can’t do anything anymore, is fucking humiliating.
Filling out the form for DWP saying that I couldn’t work anymore, and outlining exactly how this was affecting me, absolutely broke my heart.
I feel so isolated in this, and part of it is because I don’t want to tell people about what I’m going through. If it wasn’t for my wonderful partner reminding my constantly that I’m loved, and my excellent housemate being a constant source of hugs and positivity, I guarantee you I’d have fallen deep into depression.
My house is entirely stuffed up with equipment to make art with, given I could no longer use my studio at Alphabetti Theatre, and it’s so hard to open the door and let anyone inside.
But, letting people in is what I need to do.
Exposure Therapy
I need to shout out Odd Sykie here. Their first video discusses exactly how sharing their art makes them feel anxious and how scary it is to put their work out there. It inspired me to just be open about what’s going on because, fuck it, I don’t have any answers and I’m not going to get any cramped up in my house all day.
The people who are least equipped to help but most equipped to support are the friends and community you already have, and although Mark Zuckerberg seems to have taken on the same fascistic tilt as other social media platform owners, I don’t think I have much of a choice but to continue to reach out to folks there.
I still want to be a poet. I still want to go to poetry events. I want to be able to perform my work and share the incredible stories I hear in my art practice. People tell me I’m such a cheerleader and keenly enthusiastic, but having zero ability to guarantee being able to do anything is wrecking me to my core.
So I guess we’ll have to figure it out? If not how to get better, how to keep going. Just because I’m feeling too sick to try doesn’t mean that’ll be permanent.
Needing help.
I am so thankful that, despite the sheer effort it takes to write, that I could get this message out nonetheless. At least I have something that I can put in front of people and go “Shit’s fucked, can you make the effort?” because ultimately that’s where I’m at.
I don’t know how ready I am for anything, really, but I know I need to stop being holed up in the house. If we’re mates:
- Do you reckon we could meet at my house first before we head out?
- Would you mind it if we stuck to quieter places with zero pretention about them?
- Can I get a lift there and back?
- Are you ok if plans have to be cancelled last minute / you have to help me get back home right quick?
I feel like a massive burden asking for anything, but these things would be instrumental in getting me out there. I leave the house around once or twice a week, currently, which is very very not good for your mental health. I’ve been filling my days mostly with video games after doing whatever little I can, because I find the escapism helps a lot.
But you can’t escape needing Lao Gan Ma, and I’m all out of Lao Gan Ma, so if you can come round either with Lao Gan Ma or preferably out to the Asian grocers to acquire Lao Gan Ma, that’d be excellent. Please. My food is so bland without it.
So there we go.
Things are really difficult, nobody knows what’s going on, I don’t have a straight answer on if I’ll ever be better, and I’ve spent all my spoons today writing this and posting it. I’ve decided to take the L professionally, declare myself productivity bankrupt, and admit that I’m too scared to go places alone. Sorry it took a thousand or so words to do it- I don’t like looking at myself much long enough to take a picture worth the same.
Do whatever you want with this information, it’s been piss writing this, but I’m going to force myself to not be alone in my thoughts as much as I can. Your call whether you want to go focus on the big hell of it all (gestures vaguely) or see what’s up with me. There’s half a dozen good eggs who won’t leave me alone if I go all radio silent, and a few good clients who need refunds on the work I can no longer do, so I promise you if shit gets worse you will be hearing about it. 2025 can suck a fat shlong and I wish every fascist a very merry go to hell.
P.S: Go make a Bluesky account. It’s not owned by Nazis.
CHEERS!
Haley
