Today

A disability perspective:

1993:

The daily realities of living life behind a barrier settled deeper in my bones. A myriad of memories circulated just outside my body. How do I include myself when the confusion in the general population about the conditions in how my body presents itself is so negative - the facts silence me further and I go deeper inside myself, disappearing further from what continually hurts me - life.

A sentence on replay inside “It’s going to get worse before it gets better.” I can’t remember how old I was when I heard that sentence. So I kept waiting for the better, the worse was very obvious.

Worse than not being able to swallow my own saliva

Worse than not having anyone not want to come near me because they didn’t know what to say

Worse than laughing and crying in the same moment and being called names

Worse than not walking

Worse than not being able to wipe my own bum

Worse than falling into sleep which led me to vivid dreams of flashbacks leaving me feeling hot and tight in the head

Worse than……worse than……worse than

In the last couple of years as I’ve tried to advocate for better awareness about the impact on life for a stroke survivor from a lived experience perspective, I’ve come across narrow views. I have also tried to understand, from a general population point, how a young person having a stroke is viewed. In one conversation with a colleague, I discovered they thought a young person might live in a facility. At the time I was extremely triggered by a lot of things I was moving through in life and this comment made me jump and feel all hot, there was still a lot of attitudinal change to be made. I thought I was in a good position to start with attitudinal change, because this was one of those “worse than” moments. There was something about the discomfort this conversation had on me. How wrong I was - attitudinal change takes enormous amounts of work.

My experience was from a rural and regional isolated background, I had a specific audience I wanted to reach. I wanted to reach people who never really needed to think about barriers to everyday privileges like, talking, eating, being understood. My vision was clear. All I could think about was people who’d been in positions where they were abused, neglected and exploited because of their inability to communicate. Yes at the time Australia was smack bang in the middle of the Royal Commission and I was in a constant state of panic about my own unresolved experience from the 1990’s of being a young adult living the many injuries from stroke. I wanted to be a part of injury prevention specifically when it came to communication, to using swallowing muscles.

I have horror memories of me talking, trying to be involved in life and being laughed at, eye rolled at, excluded. By not only the general public and those close to me but also health professionals. Any wonder I found “life” hard work.

TODAY

I tried not to remember

The jumpy memories

They were at my side though

Even through calmer seas.

The moments are too vivid

In my whole being to escape

So I whip out my own super-hero

Flicking out my fiery cape.

I’ve moved with that precious cargo

Far too long and it’s been lonely

Traumas, like a message bank

On repeat: to phone me.

Laughter is a past delight

And no one knows quite what to say

It’s a moment that I’m passing through

Just share your love with me today.

“It’s the quiet ones we worry about” I heard as I lay surveying the damage to my body, calculating how I was going to continue in life with “this” in my bones.

“Don’t help her” I heard as I struggled to do up tiny buttons one-handed, silent in my concentration. Maybe it looks like I can’t hear, I’m waiting to be invited to communicate.

“You can have a brand new life” Said my case worker as I left the rehab centre - I wanted to scream into her perfect face that she had done nothing but distance me from myself in her work to get me to talk again. I stayed quiet.

They and more are the moments on repeat for me today as I’ve leaned into memories to shift them from my being after being stirred up from bodywork in the form of a stretch class at the gym.

Sigh - today I’m not doing so well - and that’s the way it goes.

Thanks to the cheery librarian and Rhonda at the coffee shop for your smiles.

Nina xx