Life Eye Health

Sunday 21 January 2018

Orla (20) on the reality of losing your vision: '... and I've come to terms with the fact that I'll never find love across a crowded bar'

A rare condition means Orla Comerford's sight is constantly deteriorating. But the young Dublin woman (20) is still fully focused on achieving her dreams

Looking on the bright side: Orla Comerford is determined to not let her visual impairment stand in the way of her love for athletics. Photo: Justin Farrelly
Looking on the bright side: Orla Comerford is determined to not let her visual impairment stand in the way of her love for athletics. Photo: Justin Farrelly

It happened one summer when I was 11. One moment I was in school, getting on fine, then when I went back after the holidays, I suddenly couldn't read the board any more or see the print in my books.

Some people thought I was just pretending because I wanted a pair of trendy glasses or something! But my parents knew I wasn't the kind of kid that would pretend I couldn't see things just for a pair of glasses. They took me to see a specialist who took one look in my eyes and told me I had Stargardt's disease.

The condition is genetic and affects my central vision. Weirdly, even when you go back four generations on both sides, no one else in my family has it, it's just one of those things. My eyesight had been getting worse over the years but at 11, it was like hitting a cliff and I experienced major deterioration really quickly.

I'm sure I must have been upset, but, looking back, what I remember most was worrying "Oh God, I'm going to be a weirdo". When you're 11, you don't want to stick out or have anything that draws attention to you and all of a sudden I was going to need large print books and a special laptop. Then, over the years, there were other things I had to come to terms with, like the realisation I would never be able to drive.

There's also the fact that there's no way of knowing if my eyesight will hit another one of those cliffs and deteriorate further. There are lots of studies going on, but there's no way to predict the future and I know it can happen. I know it has gotten worse, but I don't like to waste my time worrying about the 'what ifs'.

If anything, I think my condition has made me more determined to do the things I want to do. I'm such a stubborn and competitive person that from the start, my attitude was "this isn't going to change me".

I guess I do regularly understate the challenges I have in a day - I don't like complaining and also I'm so used to having to deal with them - but there are things that are challenging. If I'm getting a Dart or a bus, then I can't read timetables or numbers on buses. I couldn't live without my phone as a device to get around. I use timetable apps and enlarge them, I go on Google maps when I can't read signs and I'm always taking photos and zooming in. I know I could ask people for help, but I want to be independent and not constantly relying on others.

Night can be so awful and even at dusk, I just won't be able to see anything. I have to have a torch on my phone or other people with me. Then there's little things that I like to laugh about, like when someone shouts 'Hi Orla' from across the street and I wave back even though I haven't a clue who it is! And I've come to terms with the fact that I'll never find love across a crowded bar.

People often have preconceptions about what my impairment means. Other people with visual impairments are surprised when I say I'm in art college. It's like people have an idea of what a lack of vision is and what art is and that the two just don't work together. But I love studying Fine Art, Media and education at the National College of Art and Design. The college has been amazing in terms of support.

A lot of my work is on computers where I can enlarge anything, but even simple things like having to go to the library and read something for an essay can be hard and take me twice as long as anyone else.

When I was diagnosed, no one turned around and told me "you can't do this" - my parents just let me figure it out for myself. I've always been really sporty but I came to terms with the fact that I couldn't see the marks in racing to sail and in tennis I couldn't see the ball, so those fell away. But athletics was always my passion. I started running when I was six years old and joined my club, Raheny Shamrocks. I just love how running makes me feel, I can't even explain it, it just makes me so happy. I was determined that having a visual impairment wouldn't stop me doing what I love.

There are challenges - I find it hard to see the white lines, especially on a blue track, and I have to rely on knowing what it feels like to run a bend whether I'm in lane one or eight. I can't rely on my vision to tell me I'm in the right place. I know that even though no one ever said it, there were people who thought "she's not able for that" so pursuing athletics and competing at the Paralympics in Rio was a dream come true. It was really heart-warming how many people said "Oh my God, you're an Olympian" and when I said "it's the Paralympics", replied "it's the same thing". Because we do put in the same amount of work as people like Usain Bolt, but I know in general there's a perception that it's not the same. I'm already training for Tokyo 2020.

I've met other visually impaired people through my sport. Jason Smyth has the same condition as me and he's in the same event so he's been an incredible source of knowledge. I've also met great people through the charity Fighting Blindness. It was my parents who got involved with them first.

I think when I was diagnosed it was very hard for my family to think "my daughter now can't see and you're telling us it could get worse, there's no cure and there's nothing we can do". Fundraising and working with Fighting Blindness helped them channel that feeling of helplessness. I've met people in the same situation as me, but it's also been a great place to learn more about my eyesight and different visual impairments. I know there's probably never going to be a cure for my disorder within my lifetime, but I'm hopeful that there will be one day.

I'm 20 and having kids isn't something I want right now, but of course the genetic element of Stargardts is something I've thought about and I'm sure when the day comes, it'll be the first thing I think of and the first thing I want to do my research on.

If anyone said to me: "If you could have your vision back, would you?" then the answer would be yes! Of course I'd love to be fully sighted. But that doesn't mean I don't like my life the way it is.

My impairment has given me lots of challenges, but it's also given me so many opportunities and I'm happy. Of course, there are days when I think "this is the worst, I can't do this or that", but you've just got to let go of it and get on with things. I can't change the situation, I can only change my attitude.

October 12 is World Sight Day, see fightingblindness.ie for more information.

In conversation with Chrissie Russell

Irish Independent

Promoted Links

Life Newsletter

Our digest of the week's juiciest lifestyle titbits.

Promoted Links

Editors Choice

Also in Life