Tuesday 18 September 2018

'Deaf blindness still isn't recognised by the State' - champion golfer who has condition that affects her sight and hearing

Champion golfer Carol Brill (49) from Dundrum in Dublin suffers from a genetic condition that affects her sight and hearing

Chipping in: Carol Brill with golfing guide Joan Moore who is Lady Captain at Stackstown Golf Club. Photo: Steve Humphreys
Chipping in: Carol Brill with golfing guide Joan Moore who is Lady Captain at Stackstown Golf Club. Photo: Steve Humphreys

When I was four, I started to wear hearing aids and, a few years later, when I was about 10, I'd say to my parents that I couldn't see after I came in from the sunshine. I'd have to wait for my eyes to adjust.

My mother was very good at picking up that there was something wrong. I saw a specialist in London, who made the diagnosis that I had retinitis pigmentosa (RP), where the retinal cells gradually die over a period of years.

I found out when I was 21 that I had usher syndrome, a genetic condition that causes sight and hearing loss. My parents knew from when I was 11 but they didn't want to tell me until there was a cure. Sadly, there's no cure still to this day.

It wasn't a happy life for me as a teenager. I was very self-conscious - I kept bumping into things and I struggled through education. When I found out about usher syndrome, I felt relieved. All those physically painful and embarrassing moments made sense. There was at least some form of explanation for what I was going through.

The diagnosis was an excuse for me to do all the things I wanted to do, like parachute jumps and canoeing. It gave me that push to do these things before I lost my sight. I got involved with the charity Fighting Blindness and eight years later became the youngest chairperson the organisation ever had.

It all came crashing down when I reached my 30s. My marriage fell apart. My father, Peter, who was my rock, passed away in 2003. Even after all these years I miss him terribly. But he taught me a lot - he always said to cut your losses, move on and don't let anyone take away your smile.

Chipping in: Carol Brill with golfing guide Joan Moore who is Lady Captain at Stackstown Golf Club. Photo: Steve Humphreys
Chipping in: Carol Brill with golfing guide Joan Moore who is Lady Captain at Stackstown Golf Club. Photo: Steve Humphreys

In 2007, my daughter Sara came into my life and I haven't looked back since. It was scary and difficult being a single mom because you're trying to mind your child but you can't see her. You're going into a playground and she'd toddle off. Even in my own living room she'd crawl off and I'd be trying to scan the room to try and find her.

My sight has been gradually getting worse. My mum Ann, who's going on 80, moved in with us last year. It made sense for us to live together. When Sara was born I was on a career break from the civil service and I wanted to concentrate on her. My sight is precious - I wanted to see her first steps. I resigned from my job and while I haven't really worked in a paid job since, I threw myself into advocacy and voluntary groups.

I work in the Anne Sullivan Foundation, which provides a range of services for people who are deaf-blind. We're working to try and get deaf-blindness legally recognised by the State because it still isn't recognised.

When Sara went into first class I had an extra hour and I thought, this is the time now to start being me again. I googled blind sports and up came golf. I went up to Leopardstown and became the first lady golfer in Irish Blind Golf at the club. It was October five years ago that I first held a golf club in my hand.

My trophy case is filling up and last year I won the Irish Blind Golf Open ladies championship and the British Blind Golf Ladies Open this year. I'm off to the World Championships next month. It will be the first time an Irish lady has ever played at the world championships - you don't get the name Brill for nothing!

Theresa Schutte has been guiding me for the past two years. We've become really good friends because when you have a guide you have to have trust. Golf is a mental game - it's hard to hit a ball, it requires patience. That lovely trust between you and your guide is the key to good golf.

Last year I organised the Irish Blind Golf Open and everyone still talks about it. Some 46 golfers came in from around the world. I put in so much attention to detail and I wanted to create independence - something that is very important to someone who is visually impaired.

When people were in the Nuremore Hotel in Carrickmacross, Co Monaghan, they weren't totally dependent on their guide to take them around.

I organised awareness training for the staff and training for them in how to explain their environment.

We had a marvellous entertainment programme. It was unforgettable. What Riverdance did for Eurovision, the Irish Blind Golf Open did for the world of blind golf.

I've just joined Stackstown Golf Club and I'm nervous about the change. When they heard I wanted to join, they couldn't do enough. The golfing world is like another community. The ladies committee came on board. They said: "We want you to play here. What can we do to help you?"

I'm not just dependent on Theresa to take me out. We have a great set up. We have a WhatsApp group called the girl guides and I tap into that. If I want to play golf tomorrow, one of them will say: "I'll walk with you tomorrow." I get choked up at times - they've just been amazing. The club is doing everything to make golf accessible. They're raising the bar for other golf clubs out there.

Joan Moore, the lady captain, will pick me up and guide me. Other ladies who live nearby do the same. What that club has done for me is amazing. I never liked asking for help but I have changed that mindset.

I've realised people get enjoyment from helping. We wouldn't be able to play golf without our guides. Now I can play golf any day of the week. I'm absolutely thrilled. If I'm lucky I'll go out three times a week.

I don't know what the future holds, but I still have a lot of learning to do.

In conversation with Kathy Donaghy

Irish Independent

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