450km and Brain Injury Awareness Week

 

This week it’s Brain Injury Awareness Week. Yay for my brain, yay for yours and yay for the collective brain. Insert fist bump or maybe brain bump here.

If you saw me you’d never think I had a disability. That’s what it’s like to live with what is known as the Invisible Disability: the prosopagnosia, the dyschronometria, which still impact me and the aphasia and dysphasia of the early days are buried behind the “normality” of my appearance. So is the severe spatial reasoning deficit, the compromised working memory, emotional hyperactivity and the grand old executive functioning deficit. I’m not providing any definitions for these things because I was given none when I was discharged from hospital and I had to work out from scratch what the hell was wrong with me.

See, no one told me I had a brain injury. They just packed me off home with instructions to sort out my things and prepare for imminent death. They literally said that to me. One doctor patted me on the back of the hand, nodding and smiling as she said, “now, you just go home and sort out your things. I won’t need to see you anymore.” Then she turned on her heel and walked off into the waiting room full of people, all of them looking up to her with hope in their faces as she floated by. I looked at the big window in front of me and wondered if anyone would notice or care if I just smashed my way through and fell four stories to the concrete below.

I did smash my way through, not the window, but life instead. I refused to believe that I would die and I nearly lost the fight several times, but I’m still here, stronger and better than I ever was before. What happened to me changed me, my life and the lives of those who chose to stick around when things got really hard. There’s no going back to the way things were before and that was so difficult to accept. I lost a lot and sometimes I still lose, but that’s ok because that’s what life is, not just because I’m brain injured, but because that’s what happens when you’re a member of the human race.

I never really understood disability before I became brain injured. I certainly had no idea what being brain injured meant for a person’s life and the wide-reaching impact that it could have on their families, friends and communities in general. There are over 700 000 Australians living with brain injury and I’m one of them. So are my friends in my local STEPS support group. I see what my friends struggle with and that’s why I’m reaching out to everyone I know and everyone I don’t know to help me raise $40 000 to support what The PA Research Foundation does through STEPS:

https://www.teamparf.org.au/users/jennifer-parry

I’m walking 450km on my own from my home in Woodgate to the Brisbane CBD to kick off my fundraising. This map involved physical cutting and pasting (like we all did in primary school), photography and drawing. This is what happens when you’re not a cartographer and don’t want to spend a week trying to get Google Maps to do what you want it to do. As a result, this map sucks, but for the itinerary click here.

An adventure I will make

 

The $40 000 Fundraising Project

Featured

On the 17th of September 2019 I set off on a 450km solo and unsupported hike from my home in Woodgate to the Brisbane CBD (itinerary). I did this to raise funds and awareness for Brain Injury and also because I wanted to have an adventure. During the hike I raised in excess of $5000. My target is $40 000, so I still have a ways to go and the best part of the year to get it done. All that money will go to The PA Research Foundation and STEPS, which are collaborators in providing rehabilitation for those struck down with a traumatic brain injury. Please contact me if you are interested in collaborating with me. I’d love to hear from you!

Having a brain injury myself, I am a member of my local STEPS support group who meet in Bundaberg every month. Brain injury is known as the invisible disability and I got to talk to a lot of people, including the Minister of Health (Hon. Dr Steven Miles) about what it means to live with such a disability. “Gees, you look fine.” “There’s no way I’d ever think that you had a disability.” “Yeah, but there’s nothing wrong with you though.” Were some of the responses I got from people I met along the way.

This was the second big hike I’ve done. In 2016 I walked almost 400km to raise money for brain cancer. Since I completed that first hike I’ve been training pretty hard, which made my hike to Brisbane much easier than the 2016 hike. My attitude has probably shifted a fair bit too because on that first hike I came to learn that I am an amazing person who can achieve unbelievable things, but that I’m not special. I’m just like everyone else; the only difference being that I’m someone who had an idea and I made the idea happen. All of us can do that; you have my permission to be awesome too!

me, damien and Minister

Damien Topp (CEO PA Research Foundation) Me and the Hon. Dr Steven Miles (Health Minister) in Brisbane on my arrival. (photo: Sue Wright STEPS).