Who am I now?

Look at her!

She was so brave!

She was so fun.

She was so confident!!!

She did not give a rats arse what people thought, she just lived!!!

Because she knew life was precious, that things were nothing and that her soul was only truly happy when she was all in.

Her whole heart, her whole soul, and all of her energy concentrated on making moments.

Nothing and no one was ever going to hold me back. I would take on anyone and anything to make the world sparklier. Fundraising for things that mattered, and never afraid to take on the big guys. I took on counsellors and committees, for disability accessible spaces, or as I like to call it, making sure everyone’s human rights are upheld by ensuring that no one has to piss their pants in public purely because the toilet that has the disability sticker on the door doesn’t actually fit a person and their wheelchair, plus a carer.

I was a support worker at that time and to take someone to the bathroom you would have to take them in in their chair, transfer to the loo fully clothed, put the wheelchair back outside (every wheelie and wheelie carer is cringing right now at the thought of leaving that important item locked out side of view in a public area) assist them to stand again and get their clothing organised, back down on the loo, go outside to give them that tiny bit of dignity you are able to offer in this situation so they can do their business in peace, then do it all again in reverse! Just to add the disability tax, this was the bathroom in the ALL abilities park!!!!

There was no change station in the waterpark, nor at the only pool in town used for therapies, the council building, like so many of them, has the grand, pompous, look at all my power staircase and you had to go to Mordor and back to access the ramp. A local restaurant in town only had the service elevator to get to the dining room, so that disability tax was to get to ride on up to dinner with stacks of boxes and down again with the rubbish, which describes how we are treated by society in a nutshell.

I will get back to the disability tax in a later blog post, but you get my drift.

So I took them all on, because I am an arrogant knobhead who was going to save the world. Lined them up and knocked them down like bowling pins. Got most of them happening to. You can use the loo all by yourself now if you are a wheelchair user. And you can get changed at the waterpark after your play instead of having to use the back of the car in the carpark, or travel home in wet clothing, which is usually not worth the risk if you have an immune compromised body.

I took on AAT cases and would learn the NDIS legislations and rules inside out to represent my clients properly. I would stay awake at nights studying prior cases, my brain just absolutely loving all that dopamine. I am still to this day at 100% success rate, so please let that continue as I still do that one. Knock on wood for me.

People expected me to fix things too as I HAD been so successful previously, and RSD me was so happy being Tink the fixer fairy who only had value to others when they needed something from me. I attracted lots of the wrong types of people as you can imagine, and I even knew it at the time, but kept on going anyway as I loved what I was doing.

And I also had that belief for real. Tink only had value when I was giving to people.

All of that time, I was silently battling pain, fatigue, brain fog. I had a brain tumour and subsequently a craniotomy during that time, and was still answering clients right up to when I was wheeled in to the OR and as soon as my eyes were open.

I mean what if I didn’t answer and they spiralled into anxiety coping on their own. I carried that sort of guilt all the time about letting people down. If I failed, I let people down. I was convinced of that. Looking back I cringe at my own arrogance that I had so much power in people’s lives. I mean they coped before me, even if it was hard, and they will cope when I am no longer there. Not like any of us in our community have a choice but to cope right? It is why so many of us end up with these autoimmune disorders.

I was a huge advocate in the ND community for acceptance of us as ourselves. Dropping the mask and just being us with no shame of our different operating system of a brain, and instead a celebration of it. Because I have honestly always loved how my brain works. I have never been ashamed of it, even when BEING shamed for it.

I am so 100% proud to be an autistic.

I developed workshops, and education courses for teacher, parents, anyone who wanted to be good allies. I travelled all over Oz as a specialist support coordinator, educating on the values we have as autistics working in this sector. I saw parents of kids I was coordinating for flip their whole thought process on the types of supports they let into their child’s life, and found strength in their own intuition as an adult autistic had validated their feelings that those things were making their child feel worse.

I built a whole organisation on embracing differences and we have a 100% ND identifying organisation over at AUsome Supports, and it has been described as the most supported some of our staff have ever experienced around their differences. We have had some sort of award nomination every single year from Unique Quality Care days, to now. Most years, multiple. We even had the very first to achieve that in central Queensland.

So I am not just arrogant. I am also an over achiever. No pressure at all on myself not to fail hahaha

Then one day I looked up and she was gone. No more superwoman. No more rollerskating fairy Queen. No more justice warrior.

All that was left was things of little use to me in achieving my dreams of changing the world in every single area I came across where injustice was happening for me people.

I mean how do I scream from the top of the rooftops about the societal discrimination we incur just by existing when dysarthria had robbed me of my voice most days?

How can I march to the steps of parliament demanding adequate parking spaces in the town centre with legs that do not work most days?

How do I shake my fist in the face of Senators who voice public disdain about ‘woke’ autistics and continue to push for abusive practices as ‘best’ practice for our children when my hand can’t even hold a pen?

I can’t throw my arms up in the air in despair at singers making damaging and trauma inducing films without dislocating my shoulder.

All of those people that I knew were there just for what they can get out of me dissipated like mist on a sunny morning.

And I didn.t even have the energy or the voice, finger strength or words as my situational mutism was on overdrive, to tell them to ggf.

I mean, am I even me anymore?

I got a warm welcome to the zebra club, and a cheer that I get to have a disorder named after one of my long term and consistent interests, dinosaurs. I didn’t want to be in those clubs.

I have always embraced my identity as different, and now I didn’t want it.

My ability to fart rainbows at life turned to diarrhoea from one biologic after another that intensified MCAS symptoms, and my speaking ability was further impaired by mouth ulcers all through my mouth and even down my throat, possibly to my stomach. I WAS impaired. It was written on every report multiple times wasn't it? And discussed over and over again among my medical team.

When we went out to dinner during flare ups, I was the ‘wheelchair’. I watched shows at the zoo from my segregated area away from my family. Missing out on the joyous looks on my grandbabies faces while they watch the shows.

Check out my post on _FaerlieAutey_ on that one!!!

https://www.facebook.com/tinks75/posts/pfbid02ALAmqBSEYF7QAmF2TS9B5E4fMqHnGB7sYQyjbYobrGZpQQNYA7ufVCr7kj9CiGBNl

I completely missed out on concerts as they weren’t accessible (bye bye tickets and money). People cry and worry over me. My outings are to Drs and specialist appointments as I have to conserve energy.

I look forward to my physios visit!!

I used to go years before seeing the GP, now I reach the medicare threshold before the half

way mark.

SHE is gone.

This is what is left.

How do I find the sparkle inside her when every day is surviving one painful task after another.

WHO AM I NOW?