Lisa:
Brain injury, I can say from experience, there's nothing like it... Its diversity, its seeming in consequence, its mistaken disability status, its severity...
Everything seems fine, but is it?
The brain is the most complex part of the human body. It is the seat of intelligence, the interpreter of the senses, the initiator of body movement, and the controller of behaviour. It is the source of all the qualities that define our humanity.
An acquired brain injury, or ABI, is simply put an acquired injury to the brain. It is not hereditary, present in any way or form at birth, or degenerative. The injury results in a change of the way the brain functions, and it is an umbrella term for all brain injuries.
Brain Injury Matters (BIM) is a self-advocacy support group consisting of, and run by, people with an acquired brain injury. It is positive for its members in that it provides a space where there is an understanding of their actuality. It delivers acceptance, comfort and education.
This acceptance is a recognition of the restricted social inclusion of ABI in mainstream society, and BIM aims, at least to some degree, to overcome that.
Now let's hear from another person with ABI, from BIM, how their brain injury has pretty much defined what and how they do what they do.
Given it is so very diverse, as is humanity, this will hopefully provide you with a glimpse of how the people with ABI are coping.
What has having an ABI meant to you?
Brent:
It’s really changed my life, and in a positive way, like in terms of after my recovery, initial recovery.
It took me about nine years to mentally get over having my brain injury and to embrace it. And since then it's been physical and, I mean really going forward and getting physically fit.
But having a brain injury has become a powerful tool for me because now I represent being the president of Brain Injury Matters. And it has enabled me to be put into a community, I suppose, with like-minded people who are trying to get the better of themselves having a brain injury.
It’s my life now... It’s just put my life into a massive community of people who understand having a disability. And I suppose it’s a strength as well.
Lisa:
Have you realised its complexity? Has that changed during the time you have had your ABI?
Brent:
I suppose my focus of having a brain injury is to get physically better. Mentally, I think I am better.
Having a brain injury, it's so massive but, like, I think if you keep learning every day, becoming that better person, or where you want to get to, I think that’s how it’s changed me. Does that make sense?
Lisa:
Yes, it does.
Has society's reaction to your ABI, their knowledge of it, influenced that at all?
Brent:
I had the brain injury, and it’s more my thinking that was really affected mentally.
It took me nine years to get over that.
It was more so... not towards society... I think realising what a brain injury was for me, was more influential.
For me, knowing what it was and then me getting better from knowing.
Once I realised what a brain injury was, and that was really 2005, so really six years after my accident, I did realise most of what a brain injury was, and how it was to become better in that area.
It's more coming to terms yourself what it is, and for what you can get the strength out of having a brain injury.
And I try and get that strength out of every situation I’m in.
My feeling of what society will look at me was quite brutal for the first five years. But then it was more in terms of when got full knowledge of what a brain injury was, I turned it into my strength.
So, then I didn't really know what society was thinking then because it ended up being my future and all the rest of it.
I turned it into a really positive thing. I started doing my talking back in 2011, and I was talking to people, and I was able to deliver my message of the complexity of having a brain injury and what it means to me.
And I turned it into my strength. So, moving forward, because I was a strong, positive and confident person, like, society had to adapt to my strength and how I was reacting to my problem.
So, society’s values turned to a positive because I was creating a positive vibe around my injury.
Society was more how I viewed it, so the first five years I viewed it to be quite negative, because I was in a negative state of mind and I was struggling to go through the grieving process of losing my life.
And it took years to where I wanted to be.
And getting better at speaking. And when I became more positive and when I became more, as a strength having a brain injury, then it became a strength for me.
That’s when society changed, or the feeling I had towards society changed, because people would see me and they’d think how positive, I was being so positive.
And it was more, I think I changed my view on how society reacted, because I was more the positive person. Does that make sense, yeah?
They’d see me and think, ‘Oh yeah, he can have brain injury but he’s so positive’.
It’s because of my attitude has changed to be positive, and so influential in terms of that way, like it’s a strength for me. So I turn it into a strength.
So everyone else sees me as the strength, so the brain injury, and how I’m sort of performing.
And yeah, so yeah, that would be my answer then.
Lisa:
Thank you.
What are the positive traits of having an ABI? Are there any traits with outcomes that you never thought you would expect to have?
Brent:
The first five years of having a brain injury was dreadful, I thought I should have died.
I couldn't see any positives about having a brain injury. But then, when I got on top of that, I was strengthening and appreciating life, and all the rest of it, and turning it into a positive.
Then I try with everything I come across I try to turn it into a positive... Like COVID... So each week we have coffee mornings if anyone can come. We get 20, 15 to 20 people coming.
So going back to the question... It’s a mindset.
So if you’re really positive about everything, you turn all the traits into positive things, but if you’re negative, you turn them into negative.
So it depends on how you are that day, or that week, or that time of month, or whatever. It depends how you’re feeling about your brain injury.
And if you’re in a positive frame of mind, all the traits are going to be positive. Does that make sense?
Lisa:
Complete sense.
I so like the way, it depends just how you're feeling on the day.
The next question.
Is there anything about your lived experience of having an ABI that you'd like to share?
Brent:
I’d say get yourself involved in a community.... When I say community, a group of people who have brain injury that all understand what you’re going through.
Be involved in that community and just get talking and if that community becomes friends, they become friends...
A lot of people with brain injury get to a stage they’re burying themselves all the time. Brain injury’s all about getting better. There’s always something you can work on.
Get yourself into a really good community with people who have brain injuries, and keep going forward and smashing through life.
Lisa:
What are your hopes for the future in how society perceives people with an ABI?
It’s all about how you’re feeling. There’s still going to be bad days, and just work through it and know that tomorrow’s going to be better.
It’s all about moving forward and I believe in goal setting. And with every goal setting, you need a plan to create that story.
Keep following your plan and keep being positive, and keep smiling.
Your personal goals, as a person with an ABI?
With my physical side, I’m not quite there with my left hand, like, I’m about 90 percent, but physically it’d be to get better.
The NDIS is such a great insurance scheme which’ll get people in their right frame of mind for moving toward their goals, and I’m on the right track.
And I’ve got a great team and it’s all about creating that great team, great therapists, great people around me, and yeah, I feel like I’m in the right position to get to my goals.
Lisa:
Well, thank you very much.
Brent:
No worries Lisa.
Lisa:
It's been quite enlightening. Thank you.
Office of the Public Advocate
