Speech Transcript

Soapbox Warrior 2: Brain Injuries

I’m invisible. Believe me? It’s not just me, but lots of people like me and I’ll tell you why.

Having a brain injury is going to the shopping centre and not knowing if you’re meant to go left or right at the top of the escalator. It’s standing there, panic rising as you realise not only do you not know why you’re there, you also have no idea how the hell you got there. It’s also going to a party at a reasonable hour, only to look around after what seems like five minutes to discover there’s no one else there. “Where did everyone go?”

“It’s 4am, you idiot! Everyone left ages ago.”

It’s paying the same bill more than once; it’s not being able to recognise people out of context.

“Hi Jen!”

“ Ahhh, hi, look, I’m sorry, do I know you?”

“Yes!” the person would invariably be offended. “It’s Kate, Chris’s wife.” Sometimes I’d be able to remember, but mostly I’d just act like I could and try to get away from them as swiftly as my legs would carry me. I ended up disliking going out in public for fear of coming across someone I should know, but couldn’t recognise or couldn’t remember ever having met in the first place. It’s not being able to cope when small things go wrong, it’s getting upset at things you can’t explain and it’s not remembering moving house, where things are stored and it’s getting lost in the bush because you don’t know how long you’ve been walking for or which way you’re facing. It’s losing the people who you thought cared about you because they don’t like who you’ve become and aren’t interested in trying to learn about how your life has changed. It’s all of those things and more. But mostly, it’s about being invisible.

Back in the shopping centre, stuck near the top of the escalator it feels like everyone is staring at me. What day is it? If only I could find a clue as to what’s going on – yes – a clue: my diary open it and oh yes, there we go, I forgot to write in it. Aha! The car keys. I must have driven here. I’m fighting an almost undeniable urge to flee, but I know fleeing won’t work because there’s not a hope in hell that I will be able to find the car in the carpark. As I stand there, I start to cry and it feels like I’m trapped inside an iron cage that is getting tighter and tighter with every moment.

I don’t want to call my husband to rescue me. He’s done enough of that already and I’m sure he’s had enough of my asking him stupid questions like, “How did I get here? Did you bring me, or did I drive?” Someone who has to ask questions like that probably shouldn’t be driving in the first place, but no one told me otherwise.

No one told me anything actually. I had a brain tumour and almost died from intracranial swelling because the stupid doctors took so long to diagnose me, even though I kept telling them that I had a brain tumour. I even tried to help them. “Look,” I said, “It’s right here, I can feel it.”

“Ha! One doctor responded, “someone like you would never have a brain tumour. You’d be more likely to win the lottery.”

I’d heard of brain injuries before, but I didn’t really understand what they were or how they affect people, and I certainly never considered that I could have a brain injury, even though it seems kind of ridiculous to me now. I mean a big chunk of my brain is missing for crying out loud. Of course that’s going to impact someone, but no one said anything in the hospital and none of us thought about it either. I only worked it out for myself after I found a DVD in the library about brain injuries. Someone helpful had shoved into the space that was meant for a book I was looking for. After I watched it I thought, that’s what’s wrong with me. Watching the DVD didn’t fix anything, but it let me understand what was wrong with me and just knowing that made me feel like I could start to take control back.

I look and sound pretty “normal”, right? You’d never guess that I have a disability, but I do. I’ve got the invisible disability, just like many of my friends in my brain injury support group. Many people with brain injuries look and sound like able-bodied and able-minded people, but we’re far from it and because of this we come up against issues that people with obvious disabilities do not. Brain injuries are so very difficult to explain to people who have no experience with them. The common response when I try to tell someone about my compromised memory is, “oh yeah, I have that too.” I get the same response when I attempt to explain how hard it is or me to recognise people. And nobody can understand how difficult it was for me to go back to uni and get a degree after I became brain injured.

A brain injured person can be easily judged for what seems like their lack of motivation, lack of compassion, lack of purpose, lack of emotional regulation, lack of positivity and lack of intelligence, but in reality they are working unbelievably hard to live in a world where they once belonged, but now feel invisible. A world that just doesn’t get what it’s like to look and sound the same as everyone else, but be so different at the same time.

It’s been 14 years since my brain injury and I still struggle with some stuff. These days I’ve got coping strategies – I write down where I’ve parked the car or a make up a stupid song about it “next to trolley bay under big sign, under big sign.” That was to the tune of a Kings of Leon song incase you didn’t realise. I write stuff in a diary and on a blackboard that we painted onto our wall at home. Instead of focusing on a to-do list I focus on a have-done list, and most of all I have faith in myself as a confident, resilient person who can overcome any challenge that life throws at me. And the invisibility thing, well over time, it’s morphed into a super power because nobody has any idea just how awesome I am!