STARTING FROM SCRATCH
The sport I’m in now, trying to qualify for the 2020 Paralympics, is paratriathlon.
I compete against other vision-impaired triathletes, and I’ve been doing the sport since about 2012.
When I decided to start doing triathlons, I couldn’t even swim the length of a 50-metre pool.
So I had to start with learning to swim, attending lessons for 10 weeks just to get started. I could run, I could ride, but I couldn’t swim.
I travelled over to Europe after that and forced myself to learn how to tread water and swim by throwing myself off a boat in the Adriatic Sea. Literally threw myself off the deep end.
It has taken a long time to get where I am but I can definitely say I’m a swimmer now.
I had an experience when I was really young, in my dad’s backyard pool, that remains a vivid memory.
My three siblings and I were just mucking around, around the outside of the pool, throwing water bombs at each other. And I think my brother and my younger sister had gone inside the house and it was just me and my older sister.
I was at the deep end, trying to reach into the water to grab a water bomb that was floating and just tripped over the edge and fell in. Luckily my older sister was there. Otherwise, I wouldn’t be here today.
She called out asking for help and my stepmum rushed out, jumped in the pool and grabbed me up. I can’t say how long I was in there. I can’t remember that detail, but it was scary.
I guess I just had a fear of water from that day moving forward and literally avoided anything to do with water for the next 24 years.
EVERY SHOT I WAS BEAMING
I picked up a tennis racket again about two years ago. I was living in Melbourne, and I’d heard about blind tennis, but didn’t really pay that much attention at first.
I thought, ‘It’s not the same as normal tennis, it’s going to be silly, I’m not going to like it.’
Then a friend of mine who’s vision-impaired, talked me into going along and having a go.
I went along. And yeah, I got someone to take some video of me and I showed my partner at the time and she said she’d never seen me smile so hard. Every shot I played, I was just beaming.
It was like riding a bike. All the skills I picked up as a kid were still there. It is slightly different to normal tennis in that the ball’s a bit bigger, and it’s got a bell in it. It’s a bit softer, as well so it doesn’t move through the air as quick. But the game is essentially the same and just as much fun.
It was definitely a cool moment to be able to pick up a racket again.
I KNOW WHAT CAN HAPPEN
Usher Syndrome now is an odd space for me. I know that for a lot of people, when you get to your 30s, the deterioration can slow right down.
For most people it will speed up again, when they reach their 40s and 50s.
I’m in my mid-30s. It has plateaued for a long time and hasn’t really gotten any worse.
It means I can be still be independent and manage myself on a daily basis and still do a lot of the things I love to do. I can still get myself to work, still go for a run on my own and still follow the black line on the bottom of a pool.
Until about a year and a half ago, I was still riding my bike around as well but now I use a ride indoors or on the back of the tandem bike.
I know that in the not-too-distant future my vision may start to deteriorate again. And, I’ll just have to do what I’ve been doing the last 20 years and just manage it as it comes up.
I try not to think about it too much because it is what it is.
THERE’S A LOT OF ANXIETY
I’m an ambassador for Usher Kids Australia, a group run by a couple of parents of kids who have it.
They live in Melbourne, only a couple of suburbs apart, and found each other after one family was in a local newspaper story. The kids were the same age and it was a very confusing time for both of them.
Every September, Usher Kids Australia have a big conference, in alignment with World Usher Awareness day, where they get guest speakers in, people like me, and researchers talking about what’s going on in the world around cures or prevention.
There is a lot of anxiety with parents. ‘What’s my child’s life going to be like? Are they going to have any opportunities? Are people going to treat them differently?’
There might be a cure one day, but you can still have a really full life. I just come in and tell them what I’ve been doing and my outlook on life. And I think that helps reassure those parents that things will be okay.
Being diagnosed 20-odd years ago, at a time when there wasn’t really much support around, meant I didn’t get treated much differently.
I grew up as a normal kid, hung out with my mates, went out and partied, backpacked around the world.
That’s the message I try to get across to parents and the kids with disabilities. It’s not just Usher Syndrome but any disability. Try not to wrap them in cotton wool. They are going to make mistakes, they’re going to trip up, they’re going to have opportunities, and you just need to let them live their life, how they want to live it.
Yes, I live every day with a disability and it can be frustrating and makes things harder. I can’t drive and there are a lot of other things that I can’t do either.
But I can work around that. And I can still do things that most people do, even if it means it’s done in a slightly different way with a bit of problem-solving.
Having that approach to life has allowed me to not have my disability define me.