‘I’ve quite a small field of vision – less than 5%’ – The Irish Times

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Katie George Dunlevy and Eve McCrystal with the two gold medals and one silver medal they won at the 2020 Paralympic Games in Tokyo. ‘Physical activity is really beneficial in terms of wellbeing. Believe in yourself. Reach out for the support you need and meet other people,’ says Dunlevy. Photograph: Laszlo Geczo/Inpho
Blindness comes in many forms and can develop at any age through a variety of different eye conditions.
World Sight Day (on October 14th) is an international awareness day, coordinated by the International Agency for the Prevention of Blindness in cooperation with the World Health Organisation. Three members of Fighting Blindness, an Irish charity which funds research and treatments into sight loss, talk about how their eye conditions impact on their lives.
The 39-year-old is taking some time off after winning two gold medals for tandem cycling at the 2020 Tokyo Paralympics with her pilot Eve McCrystal. “Every year, I take about 10 days off in September, but I’m taking a bit more of a break after the world championships and Paralympics,” explains Dunlevy.
Although based in the UK, Dunlevy races for Ireland because her dad is from Co Donegal. She was diagnosed with Retinitis Pigmentosa (RP) when she was a child.
“It explained why I was struggling so much at school. The teachers thought I was stupid. When I was diagnosed, I got books of my own and was put closer to the board. I found it hard to take and I refused help at first.”
Soon after, she was sent to a special school for children who were blind, where she also struggled to adapt but eventually settled in.
“For the first time, I wasn’t left out of sports because sports were tailored for the visually impaired. My confidence grew. The activity co-ordinator said that I was a natural swimmer and coached me for swimming and athletics competitions.”
While still at school, Dunlevy began entering and winning competitions.
“I won a bronze medal against older girls at the International Blind Sports Association European Championships in 1999,” she recalls.
Following her General Certificate of Secondary Education, she moved to another school where she was introduced to many more sports. “I was still swimming and doing athletics, but I tried skiing and rowing and tried out a tandem for the first time,” she says.
While studying for her A levels, she began exercising excessively and lost a lot of weight. She completed her exams, but went back to her family home for a year to recover, deferring her course at the University of Southampton. Once in college, she began rowing and trained hard for a number of years without being selected for the British team.
In 2011, she began training with the Irish rowing team but broke her ribs.
“I realised that I couldn’t take it any longer and one year later in 2011, I tried the tandem. I now see that my determination [in tandem cycling] came from all those years struggling with the rowing.”
Dunlevy says her RP has been more or less stable since her diagnosis. “I’ve quite a small field of vision – less than 5 per cent. I struggle to see in bright glaring light and dull light,” she explains.
She uses a “symbol cane” in airports and busy locations. This is a light, thin cane which hovers above the ground.
“My eyes don’t look any different and sometimes, people who don’t know me might say, there is nothing wrong with her. In other ways, that can be a good thing in that you aren’t treated differently.”
The Covid pandemic didn’t make much difference to her life.
“Cycling is so full on. I do two sessions a day [on an indoor training bike]. Then, it’s about recovery, fuelling yourself and getting rest and sleep. In the lockdowns, I just went outside for fresh air.”
Her advice to other people diagnosed with RP is to find something they enjoy and can do.
“Physical activity is really beneficial in terms of wellbeing. Believe in yourself. Reach out for the support you need and meet other people. I still have self-doubt all the time but I’m very driven.”
The 40-year-old was diagnosed with the degenerative eye condition, Retinitis Pigmentosa (RP) when she was just 17. At that time, she was learning how to drive and became aware that something was wrong with her sight.
“That put a stop to my driving lessons. I was also struggling to read the board in school but I pushed myself to complete my Leaving Certificate,” she explains.
Following school, she did a Post-Leaving Certificate course and got a job as a medical secretary. However, although her eye sight had deteriorated further – RP impacts on the peripheral vision first – she decided to return to education.
“I did a two-year access course at Pearse College which led to a degree in social policy and sociology, followed by a Masters in social policy and social rights at Maynooth University. I believe that my sight difficulties gave me the determination to push through the barriers and challenges at college,” she says.
These challenges included accessing technology to help her read documents. Stafford now uses her skills to advocate for people seeking housing in the independent living movement. She currently lives with her parents, one of whom goes on regular 5km walks with her to help her maintain her fitness levels.
“I don’t see people until they are right on top of me and I don’t see slopes so I need to walk with someone by my side. I’ve started using a cane in the last three years but I find it’s dangerous to be on your own, even with a cane,” she says.
During the Covid-19 lockdowns, Stafford withdrew somewhat as she was fearful of not being able to observe social distancing.
“I got verbally attacked in the supermarket once because I couldn’t see the marking on the floor indicating where I should stand,” she explains. The increase in outdoor dining has also made navigating streets more difficult for people with sight loss.
“I like cooking and listening to audio books. I can’t travel at the moment but listening to audiobooks makes we feel like I’m away on holidays.”
And what advice would she give to anyone newly diagnosed with a progressive eye condition?
“Keep your dreams alive which is hard when you are first diagnosed. The first year is like grieving [your lost self] but you slowly come out of yourself,” she says. There is currently no cure for RP.
Stafford stresses that there is a lot of help out there if you look for support.
“I do a technology club, coffee mornings and mindfulness classes online. You can’t drive a car but there are ways of working around things. You can learn to live with your condition.”
The 31-year-old has had Type 1 diabetes since he was nine. He managed his condition reasonably well over the years, studying community sports leadership at Dundalk Institute of Technology and the working as a swimming instructor and lifeguard in a leisure centre.
However, about three years ago, he hit his head on the boot of his car and burst some blood vessels in his eye. Shortly afterwards, he was diagnosed with diabetes retinopathy, a complication of diabetes caused by high blood glucose levels which damages the back of the eye.
“I realise now that I should have gone for the annual free diabetic retina screening checks but I didn’t. Once I was diagnosed, I had injections into my eyes to help sort things out and up until Covid, I was still working and driving,” he explains.
However, one day, he was driving from his home in Cullen, Co Louth when he suddenly had to stop the car.
“I had no idea where I was. I lost so much vision that night and what previously had been like floaters in my eyes turned to blind spots,” he explains.
He says from June 2020, he has had to come to terms with the fact that he is going blind. “I had to give up my job as a swimming instructor and stop driving,” says Lennon, who lives with his partner, Aoife, their seven-year-old son, Noah and their Old English bulldog.
Recently, he has started working on the till in a nearby Chinese takeaway. He says that he uses a stick most of the time and walks a lot.
“The cane is a great help and everyone leaves voice messages for me rather than texts. I’m getting by and learning what it’s like to be blind without being 100 per cent blind,” he says.
He jokes that at home, most of the crockery is chipped from him washing it. “We have put stickers on the doors of the oven and the washing machine and on the button to open the gate so I know where they are. I go for a 10km walk every morning with the dog. He gets me out of the house. I also started playing the piano for one to two hours a day.”
Lennon says that people are very helpful and kind, but his one gripe is that he can’t hear an electric car approaching.
“I listen a lot better because I’m not distracted by what I’m looking at but I’ve been very close to being hit by an electric car in a car park. Electric cars really need to have a noise for people who can’t see them approaching.”
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‘I’ve quite a small field of vision – less than 5%’ Three members of Fighting Blindness tell how their eye conditions impact their lives
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