top of page
file0.jpg
c wstubbs

Coming to terms with ANGER and disability. edit.

Updated: Oct 18

Woke up feeling like my world is completely crumbling into dust. Such extreme hopelessness.

Epic Fuckery.

A month ago, I got an email, inviting me to enrol into the accreditation level of my counselling and psychotherapy course. I’ve deferred for the last 2 years due to health issues due to #LongCovid, I manage my life in such a way, that I thought it was a possibility. I’m seeing a new functional medicine man, whose looked at my blood, seen my misshaped red blood cells and says I’ve now developed an auto immune issue.

I have been given a bucket of supplements, larger than the skip it’s gonna take to get rid of all of Carrie’s wallpaper. So I had about a week, where words, big words, came back to me. Where I could participate in twitter spaces, I could engage in once lost resources of the brain. I could think deeply and remember those thoughts. It was like breaking through another glass barrier between myself and the world. That parts of the old me were re-emerging.

The thing is, when your brain gets wiped, your new state of consciousness isn’t aware of the missing parts, its working with what its got. So to see a flicker of what once was, the person friends claim to miss, was pretty great.


SUTU face thing

So being all trying to be confident in my body not breaking down, I went to an daytime NFT conference thing in LDN. I emailed the venue to see if there would be seating and lifts. I contacted the organisers. NO response. It’s a few talks, I can do this right? Me and my better brain can handle going out in public, by myself in a environment that is just the IRL version of the weird and wonderful shitstorm I’ve been participating in the last 16 months? Right?

I couldn’t have been more wrong.

There’s a reason I think I can function on a day to day basis. I keep my environment very controlled. I don’t have to stand.

Getting there, there is a line. I take a knee. Staff get me a chair. There’s no lift. I slowly get down the stairs. I go to the conference area. it’s loud. Really fucking loud. There’s some crazy decibel fans going on, and sound checks, and music and lots of people talking. I have my earplugs, but forgot the BIG BETTY cans, (the construction style & very attractive noise reducers I have come to depend on). First time I have left the house without the cans AND ON MY OWN, WTF WAS I THINKING?

My arm starts to twitch, i try to breath my way out of it, the lady next to me is also not digging the sound, she explains she is autistic, she is going thru some masking rituals, i feel like i am in good company, i keep my bag on the chair next to me as I can’t control my arm and i don’t want to hit someone in the face.

My system is on full red flag warning, i should have got up and left. really. But I don’t’ think I could have made it back up the stairs.

The loud fans turn off. Calm. But my system is now overtaxed and I just want to go to sleep. The talk is ok. I was expecting a little more in-depth discussion. I need to move.

I’ve totally forgotten that I get audio/visual overload and when that happens my body doesn’t respond to my brain. Whether it’s the POTS, dysautonomia or what, I don’t know, but now my balance is fucked and so is my depth perception so I have to cling on to walls to get around the venue. This feels as embarrassing as fuck. I want to cry. I find places to sit. I talk to a couple of dudes. (I didn’t hear the word BRO once during the 2 hours I was there). We talk decentralised vs centralised, PFP’s & that by being early, means that Web 3 is at the dial up modem stage of the early 2000’s and that this shift in technology and accessibility is totally in it’s larval stages although currently being seen as just crypto-gambling for jpeg playing cards.

The SUTU, NEONZ exhibition is beautiful. A fully immersive beautiful vision of what many of us oldies thought Tron and the promise of the metaverse may be. But there is nowhere to sit and I am done sitting on the floor.

In some fantasy, I was hoping to find human connection to many of the people that I engage with on the internet. Those that unknowingly have kept me sane and distracted. One lady i spoke with was cool, but wouldn’t give me her IRL or twitter name, out of fear of doxing, so we just refereed to ourselves as Jenny1 and Jenny2.

The ART was displayed really really well. The Poetry AI section was good. The other workshops although good, required standing in line, so not something I could participate in.

The ART on display was of really high quality and deeply inspiring. Most of it far removed from the top 100 trending charts on OS. Also being sponsored by TEZOS, which is currently the most carbon friendly blockchain. So as far as an artistic experience went, it was inspiring.

But the reality of it, left me a little heartbroken. I’ve been living in a stage of total denial. I am not well. I am partial disabled and that really fucking sucks. It’s maybe the 2nd time I’ve been out out in about 2 years and i did it on my own. That was a huge mistake. There’s a reason I spend most of my time in bed or at my studio.

What I’ve realised is that there is no way I can go back to school yet. That little 2 hour jaunt cost me 2 days in bed. I can’t process that much information. So yeah. But hell, I made it out. l pushed a boundary and now after a couple days of brain damaged exhaustion, after 2.5 years, I am maybe ready to admit that I am unwell.

I think i have been through this stage before. But I can’t remember. So going to talk to the enrolment advisors on Monday, might need to defer again and go back to trying to figure out how to get myself out of this ever evolving state body and brain limitations.

and to keep making ART but staying off Twitter. If I’m going to scream into a void, I’d rather do it with a higher character count.

Dog bless.

0 comments

Comments


bottom of page