December

WTF

Hi team!

How’s things, what’s the goss? Been living some LIFE if you know what I mean.

NDIS eligibility review has been an expensive exercise, and we’re just getting started. Psychiatrist appointment: one THOUSAND dollars. New support coordinator: brilliant, sees things through to their conclusion and only involves me where necessary. New OT. Again. Told the last one I had a finite amount of funding for a functional capacity assessment (NDIS froths for an FCA). They did a Progress Report. Now I need to use 15 hours of funding from regular therapies to get the new OT to write… guess what? An FCA.

This sounds super shitty but weirdly I’m doing ok in the eye of the storm. I found out that the severe fatigue I’ve been experiencing was from a very painful injury. I haven’t been able to walk properly for two years and didn’t know that, I just thought I was super tired. Brains are wild - the compartmentalising necessitated by the cray and the traumz makes things like this happen. Physio referred me for lymphatic drainage and after getting that it turns out I can walk without being obliterated. What the FUCK (complimentary).

Been powerlifting again, and on Saturday I not only worked out what to make for dinner, but I cooked it and also fed the pets. I haven’t been able to do any of those things for a time longer than I can remember.

So I’m still kicking against the pricks and finding my way, but there’s an element of new clear headedness. It’s making things possible that before would send me into quite a spin.

A few months ago I won a prize and that was nice but also I only won the prize because I self nominated on a day I could be bothered participating. The work wasn’t published anywhere, I just got a word doc certificate and some judges statements that were super misgendering. I agonised for a few days about whether to say anything, then with the encouragement of my queer writer’s group I sent a brief email asking them to update their language. Their response was that their statements were only coming to me, so it didn’t matter.

So I got on my bullshit and told them it did matter and when a trans person discloses their gender, that it’s important to be welcoming and not hostile in response to that information. Apology arrived quickly, but honestly fuck submitting my work for prizes again. I don’t even remember the judges statements about the work but now I kinda hate that piece and want to set it on fire because it carries this experience with it.

It’s so embarrassing to send your writing places and say “oh please pick me, please tell me I’m good!” I mean, that’s the publishing industry in a nutshell, but I gotta say a lot of prizes, generally, give me the ick. There are so many vanity prizes in all sorts of sectors that you get if you pay the big entry fee and show up at the “awards night” which costs $Texas per seat and that’s even more embarrassing. There are absolutely genuine prizes in literature and community involvement, but so many are… not? It’s sort of like the vanity publishing thing of “I was featured in Forbes Journal for Nepo Babies as a Clever Business Boy!”

I got them salty feelings about the arts in general and who gets to make art, who is resourced to apply for funding, and who is in survival mode? Their art might save them, and others. But we never get to see it because they’re already beyond capacity.

God, I sound judgemental. I do have deep salty judgement for the systems, rather than the people, and this endless carrot of achievement dangled in front of us. I’ve been writing in circles for half a decade trying to get a book done and I can see the finish line. What I’m figuring out at this end of things is that it’s important to write, to understand, but also to live my life away from the narrative. I will never, ever finish if I don’t do that because I’ll turn into the snake eating its own tail.

In wonderful news, last week I showed up 24 hours early for my psychiatrist appointment. I wasn’t late! That’s not the good news, keep reading. I changed it to telehealth cos she’s three hours away and that’s too much driving for Jasper. But her office is twenty minutes away from a mobility scooter store. I walked in, tried the one I’ve been eyeing off online, and now I’m ordering it. I think I need a pirate flag. It was a very big step to allow myself to think of doing this. Internalised ableism is like mould and microplastics, living in us all.

I have better mobility since lympho draino (which sounds like nympho I guess?) but the scooter is for days when I feel like dogshit. Having the option of climbing aboard my crip chariot is the difference between being trapped at home and getting to be out in the world. No, the NDIS is not funding a cent of it (or the thousand dollar psychiatrist report). Stand down, angry mob of taxpayers! My lovely mum is getting it for me.

Does that make me a nepo baby? Probably not, but I am self conscious about it while also wishing to be transparent about the privileges I have. Everyone should have access to mobility devices, as soon as they need them, and not several years later. I’m hoping to be able to attend protests, so the next step is overcoming fear of crowds. Is that possible? It’s a lot more possible if I don’t need to stand the whole time, that’s for sure!

Ok, over and out. Love you, take care. JP xo