Cathy Matthews

35 years ago my son got hit by a car and sustained a severe brain injury. He was five years old. We lived rurally so there was little to no support. For a year we travelled to Dunedin daily to get our son to the hospital for various therapies. He was covered initially by ACC but after a year or so they closed the case and we just struggled on.

I joined the Head Injury Society and as a community-minded person, I was snapped up by their committee. I appreciated what they did but I also recognised the need for more in terms of outreach and advocacy in the community. The Brain Injury Association was looking to set up a liaison service for the Otago region and I jumped at the opportunity to work for a cause I was passionate about. BIA Otago started from my spare room at home with a phone line, a computer and a filing cabinet.

When I came into this role I would say to clients, I don't know what it's like to have a brain injury but I know what it's like to live with someone with a brain injury. Well, that changed when I was diagnosed with a brain tumour 10 years ago. I'd been talking to people about brain injury fatigue for years but wow, when you experience it yourself, you certainly understand it a bit more.

After my surgery I didn't want people thinking 'oh, she's not as good as she used to be.' When I was at the ISIS rehab centre the ACC person came to see me and I told them I'm better than I've ever been' because I didn't want them thinking for one minute that I wasn't as good as I'd been. I'm able to work just fine but it's the little things that can bog you down like not being able to recall things or going blank or when you're trying to explain yourself. I write a lot of lists.

Truly, I think the hardest part of living with a brain injury is the fatigue and that people around you do not understand what you're going through because they can't see the problem. That can cause social issues but if we can get good support and education in place early, you can prevent a lot of those problems. When people understand what brings on their fatigue, for example, they become more self-aware and look after themselves accordingly. I find being in direct sunlight will bring on fatigue for me as well as being in noisy environments.

We're not therapists and we don't profess to be. We provide tips and strategies for the everyday life stuff. We help our clients understand what part of their brain has been affected by the injury and what difficulties they may experience because of that along with giving strategies for working around those issues. My injury is in the part of the brain that deals with coordination and balance. I can get a bit wobbly on my feet but my cognitive function is good so I'm able to work. It's important to know what your strengths are, as well as your weaknesses.

It's wonderful to see people making progress. They're very special and we appreciate that they open up their lives to us. I've never felt like, oh god I've got to go to work today. Yes, it's great when we see someone get a win with ACC or receive an entitlement, but what I love most is seeing improvements in the quality of their lives. New friendships develop through our groups. Those with an injury start accepting that life may have changed, and they want to move forward rather than strive to go back to who they were. That's the heart of it, that's what makes it all worthwhile.

"...it's great when we see someone get a win with ACC or receive an entitlement, but what I love most is seeing improvements in the quality of their lives."