Good aftermorning fellow travellers, and may I begin by wishing you as fine a day as you can grab hold of. I hope you are well, and that there are pockets of contentment among everything else.
The alarming passing of time is gripping us all by the throat, and I’ve felt it keenly this week as my tiny five year old newborn attended their first school transition day. Well, ninety minutes. How did this happen? I sung Cats in the Cradle with dramatic crescendos in the direction of Mrs Peach as we ambled toward the other end of the school from our kid. She placated me and my way of processing by making a big joke out of everything with a performative component. We’d been shepherded out of the space so our children could make kites and become familiar with their classroom.
Standing around in the school’s kitchen classroom, I eyed off the many chairs that nobody was using. I was trapped next to the urn in another conversation where nobody could hear me due to my mask and the sounds bouncing around all the surfaces. I eventually unstuck my legs and wandered over toward Vanessa, sitting beside her. Everyone was eating cakes and biscuits and drinking tea and offering them to me. I politely declined. Once I was seated and talking with this person I long to have moments to talk to I realised it wasn’t the seat I needed, it was to get out of the room.
When people can’t hear me, they lean in closer. I avoid screaming by focusing very hard on not offending anyone any more than I already assume I have. It’s so funny to me that a large percentage of the adults in the room are neurodivergent and we’re all holding in our screams in different ways. I wish we would all have a good old scream, and bellow things like I CAN’T HEAR ANYONE AND NOBODY CAN HEAR ME! MY FEET HURT! I HAVE A CORPORATE GIG IN ONE HOUR AND I NEED TO CONSERVE EVERY SKERRICK OF ENERGY POSSIBLE BUT MY BABY IS IN THE CLASSROOM!!!!!!!!! I CANNOT EAT OR DRINK ANYTHING BECAUSE I AM CONVINCED IT WILL MAKE ME DIE SORRY FOR BEING WEIRD ABOUT IT OH MY GOD IT IS SO EXHAUSTING.
Even two hours later at dinner, my tiny baby exhibited patterns of speech and concepts that were nuanced and philosophical. The lack of doubling back from kinder to school and home in my immediate future is tantalising, moreso the eventual five potential days with stretches of consecutive hours to be a person who is also a parent. But in those moments - wait, hours!!!! - I will get to find my flow state and get down to work. Mon dieu!
We’re moving into a new phase of life, and with it are stretchier brain cavities. Caves with space for understanding new things that are liberating and sparkling with wonder. Sometimes people give me the most stunning gifts, and they don’t even know it. I’ve written here before about the word Heliotropic. But a few newbies have entered the chat of late via my pal Charcuterie. No that is not his real name, but lemme tell ya, the cute ain’t in there by accident.
JADE is an acronym sometimes referred to in twelve-step programs, or used to describe the ways folks with narcissistic personality disorder will communicate. But before I show you the other letters that go with the big guys, it can also be a tool that neurodivergent people learned in childhood to use as a way of staying as safe as possible in a neurotypical world. What?! It can be for “bad people” and “good people”? Lol, there’s no such thing, silly.
Justify, Argue, Defend, Explain is what we’re talking about here. If we’re engaging in conversation or conflict with another person we want to avoid all these guys. What this can look like is someone taking a pot shot at something you’ve said or done, and having the developed emotional skills to respond rather than react.
A response might look like “Ok, thanks for your comment” where a reaction might look like a rambly justification where you defend yourself and argue every side of every point they’ve thrown at you, because you believe it’s necessary to explain yourself.
Oooooof! Is this resonating, my fellow spice pals? As I absorbed this very cute and life altering information from Charcuterie I found my mind screaming lots of things at me.
Bro, I said to myself, please lower your volume. The screaming is hurting my nerves and making me feel quite dysregulato!
Ok bro, the screaming replied, more softly, and we got down to business.
In an orderly fashion, the thoughts separated out into spacious paddocks where they could frolick and chew their cud, or evaporate completely.
But someone is being wrong on the internet!
Am I JADEing every single time I write? Fuck! Do I need to delete my ENTIRE book?
Am I a person with narcissistic personality disorder?
Where did I learn this? Why have I kept doing it?
(big feelings clump that didn’t separate out but needed some love directed at it)
Everyone definitely hates me
After addressing all the paddocks (which I obviously did in a super cute outfit involving jaunty gumboots and overalls and a big straw hat) and their thoughts, a funny thing happened. Not funny ha ha, funny peculiar. I came home from a day in Naarm (where I saw a really great doctor!) and Mrs Peach said “that’s a nice tshirt”. I replied “thanks!” and then we watched The Sopranos and ate Biscoff cheesecake.
What’s so funny about that, JP? Well, a few days earlier I would have frozen and felt like I was in trouble. A delivery of very fast word vomit would follow, extolling the reasons I required a new tshirt, where the funds came from, and why this action was permissable under law. Mrs Peach doesn’t give a shit about any of this stuff, she was literally just admiring my goodies in yet another cute stripy soft cotton number. (I love horizontal stripes cos fatties aren’t supposed to wear em so fuck that. It’s nautical time, bitches!)
Before responding I felt the urge to justify, and all the rest. The urge didn’t come from that moment, it came from a gajillion little star moments that make up a constellation of misunderstandings. From me, from my elders, from every person you can possibly imagine. Most of my life I’ve figured out a rule by observing people, fuck it up because it didn’t apply in this exact situation actually, and you ding dong, you’re not very good at life, are you?
JADEing is a way to keep your nose above the tide, but it wears you out and removes your capacity to feel anything else outside the monumental task of defending yourself.
I can’t believe how quiet my head can be now. I take a wee pause and do the opposite when I feel the urge to JADE it up.
A few weeks ago I noticed that I’d seen a local acquaintance I like at the fruit shop but hadn’t processed it was their face until I was back in my car. I didn’t want anyone to think I was pissed with them, when it was just me being a bit freaked out. I am ruled by a nervous nervous system but I get out as much as I can. I am committed to maintenance therapy around my anxieties and obsessive compulsive tendencies. I think a lot of us are in this boat, and that’s why I bother writing about it.
I shared on Insta/FB my fresh new Covid mitigations for summer, in what I thought was a friendly and conversational manner. I do this to be a visible reminder that all humans have different needs, and there’s no shame in letting people know what yours are. I have the privilege of the capacity to string a sentence together and a large online community, so I use it for as much good as I can muster.
Unfortunately a helpful comment about covid not being that bad set off my JADEtastic expression and I reacted by letting that person know I wouldn’t be engaging in that discussion right now. A nerve was hit, or perhaps several nerves, and their comments went on and on and on. Not only was I selfish, conceited, deluded and cruel, but I have to be the most crippled and challenged human being in the room. Some people have real problems, you know! You are not aware of your privilege! GoodBYE. After all I’ve done for you! Etc. Another GoodBYE in case the first one didn’t make it through the mist.
I haven’t had this kind of thing happen before. It hurt like a bitch and set off my “omg everyone is so mad at me and they definitely think I’m the world’s biggest drama queen” alarm. On an ordinary day it could have slid off like teflon, but this happened in the direct aftermath of my physical disabilities being removed from my NDIS plan at review. I’m cured now and they no longer exist (immense sarcasm).
That kicked off a bunch of medical trauma also wrought by an insurance system (Workcover when I was newly disabled) and I was having a bit of a rough time existing. I felt deeply confused about how to get dressed in the middle of putting on my trousers. When driving to pick my children up I forget how to get to their school or kindergarten and had to look it up. I lost one hundred percent of my confidence in how to function at a basic level. I fatigued after the most basic of tasks and needed to stop until I could move again, or begin to think about how to move. It’s been a bit dicey.
Luckily this isn’t my first rodeo and my friends are excellent. Old made Eden informed me that my only job in life now was to try to feel good, so I did some cross stitch and watered my garden. Marvelled at the sweetness of an apple, noticed birds and their beautiful calls. Did some halloween face paint for my kids. Slowed everything down and put one foot in front of the other.
My initial reaction to the angry comment voms was JADEy, because I couldn’t understand what I’d done to illicit it. I am just some guy getting by, sharing info when I can manage it. It wasn’t about anyone else, I was just talking about me. If they didn’t understand that, maybe I should explain it to them. Would that be the kindest way forward? But that’s where I always get stuck because it’s never about hearing each other. JADE is about being the loudest for the longest and winning the I Am Correct competition.
A parasocial relationship holds no basis for informing a person what is true about them. Someone who feels entitled to my attention, time and energy when I have never indicated this to be acceptable to me is not my friend. Huge newsflash: stick with me here, but social media is not even close to real life. Nobody can know what happens inside anyone else’s front door, even when they share snapshots and captions here and there.
People will think whatever they like, and act accordingly. They’ll either be in a place to absorb additional information or not, and nothing we do during conflict will change that. At first I felt sick about it, because clearly this was the zeitgeist of what everyone had been saying about me all along. Nothing that I think is done for the greater good is for anyone but myself. Blah blah blah blah self hatred yadayadyada. Be small, shut up, say nothing, it’s the only way to make it through this moment/hour/week/life.
Then I took a moment and realised it wasn’t true, made a Canva tile about it with a trophy and moved on with my life.
Alt text: a white Canva tile with a yellow/golden trophy and black text reading The most crippled and challenged human being in the room.
I won’t be shutting up, but thanks for giving me a few days to entertain the idea.
A very, very good thing happened!!!!!!
When my NDIS plan was stripped of all my physical stuff, this also made all the home modifications and assistive technology that I spent about nine months gathering reports for, null and void. The reports happened at serious expense to the NDIS because OT’s need to be paid and I lucked out with a truly abominable case of A Very Shit One. That’s a story for another day, and will be collaboratively offered between myself and several other crips who have similar tales of OT under NDIS woe. One for the “is this actually happening or have I once again lost my damn mind?” files.
One of the pieces of AT was a trike designed by Freedom Wheels. They make cycling accessible to people for whom the equipment does not exist. Designed by (good) OT’s and offering trials in regional and city centres. A few days after being informed by my new bestie Natalie from the NDIS call centre (we don’t have access to their last names) that this wasn’t a disability specific item, I received an email from Freedom Wheels.
I’d done the trial in October 2023, and my support worker recorded some videos of me RIDING A BIKE!!!! (trike) with the goofiest grin you will ever see. They were following up to see if I still wanted it, and I said very much but I just got the news that it was off the cards. They asked me to send a few paragraphs about myself and what the trike would mean for me. I said that my children always ask why we can’t ride bikes to school and kinder like other families, which for the last year I’d been responding “soon I hope we’ll be able to!!!!” Then some stuff about the work I do and how it felt to ride one in the gymnasium in Bendigo last spring.
I didn’t think anything of it, because shit seriously be fucked for everyone right now. There was no way this would happen. But last week I got an email that they’d secured external funding, and this week an email saying that payment had been received and they were building my trike for me. I would be able to see it in about 6-8 weeks. I will never believe it’s true until I’m sitting on it but when I tell you this has given me something to look forward to, by that I mean I am working very hard every single day on my physio, stretching and strength.
There are things happening for NDIS participants that would make your toes curl. The private groups we share information in are full of stunned and hurting people whose quality of life has just been substantially diminished, by a new hire on the other end of an unexpected phone call. People are being yelled at when they begin weeping, and we are no longer individuals with goals and lives that we want to live brightly. We are pixels to fit into an arbitrary spreadsheet that isn’t available to us to try and understand.
My community have offered to help me fight for my own case. But now is not the time for that. I realised as I was waking the other day that nothing in life ever stays the same forever. The disabled community are political footballs, and while it was good we could make the most of it. Now while it’s bad, we have to grit our teeth and help each other through as much as we can. The ocean doesn’t willingly destroy a life by taking a person away in a rip, it’s just doing what it does. Politics has very personal outcomes, but the machine that makes it does not hold feeling or consequence. There are seasons and now is the time to care as much as possible for our own mental and physical wellbeing. We need to reduce the collateral damage. For me that means steering clear of any dealings with them for several months. I have the privilege that means it won’t kill me, what I’ve lost in terms of funded support. It will diminish my quality of life, but I’ve been there before and got through it. This is known territory and I know not to trust anyone in positions of power when it comes to my care needs. There are all sorts of agendas that have nothing to do with me, but could wipe me out just like that.
From memory this is what the trike bike thing felt like. Alt text: a fully sick silver metal motorbike with giant tyres and heaps of spikes and shit.
So for now I look forward to riding my trike, affixing obnoxious stickers to its body and getting a very silly helmet. I will build up to riding with my children to school, and in that way we will be like the other families they see and wish to emulate. I am so intensely grateful that this will be possible for us.
All my love, JP
🥹