Friday 27 April 2018

'I can hear the kids laughing, so I know they're happy, but I can't see them' - Dad-of-three who is almost totally blind

Leo Hynes, a father of three, has, in the past two years, gone almost totally blind. He tells Joy Orpen that once the initial shock wore off, he began to find alternative ways of coping with the challenges that he faces

Leo Hynes with his children Lauren (seven), Fiadh (four) and Aibhinn (three). Photo: Ray Ryan
Leo Hynes with his children Lauren (seven), Fiadh (four) and Aibhinn (three). Photo: Ray Ryan

One summer's day in 2004, Aisling O'Connor joined friends at a pub in Tuam, Co Galway. It was a lovely evening, so they sat outside, enjoying the sunshine. At a certain point, a passer-by knocked Aisling's favourite sunglasses to the ground, damaging them. Leo Hynes, who happened to be standing nearby, offered to fix them. A lively conversation ensued. He walked her home; she invited him in for coffee. They were still babbling away at the kitchen table at eight o'clock the next morning, and they have been together ever since. However, unbeknown to them, glasses would become a defining feature of their relationship.

At the time, Aisling had completed a law degree and was employed as a legal secretary. Meanwhile, Leo was working as an electronics engineer, even though he had limited eyesight. "The macula in my left eye didn't develop properly before I was born," he explains. "So, my central vision was severely restricted. Nothing could be done about it." However, that didn't stop him enjoying football, soccer, swimming, rugby and cycling. He's even done a number of triathlons.

In 2008, Leo and Aisling married, and settled in Tuam. A year later, Leo was doing sudoku when he noticed a disturbance in the vision in his right eye. "The lines were moving up and down," he explains, "so I went to my optician, who, noticing an anomaly, arranged for me to see a consultant at the Galway Clinic the following morning. We were shocked, because we thought it was going to be something simple like a speck of something in my eye."

Following various tests, Leo learned that he was suffering from wet, age-related macular degeneration (AMD). According to the National Council for the Blind in Ireland (NCBI): "AMD affects the macula - a small part of the eye responsible for central vision which allows you to see detail."

"The consultant ophthalmologist said blood vessels inside my eye were leaking into the macula," Leo says. He was given an injection in the eye and told to stop all sport. "I wasn't alarmed when I first got the diagnosis, as I was told treatment was available," says Leo.

That indeed proved to be the case, and following his next injection, three months later, he was able to resume all sporting activity.

Over the next few years, the couple celebrated the arrival of their three children, Lauren (seven), Fiadh (four) and Aibhinn (three). Things went well until one day in 2015, when Leo's vision blurred while he was feeding Aibhinn. "I couldn't see her face," he says. His consultant saw him straight away, and gave him another injection.

However, this time it didn't work, so he was given another one a few days later. When there was still no improvement, different medications were tried, but to no avail. At this point, Leo was finally forced to stop working. "I couldn't see properly, and I couldn't drive," he explains. "As you can imagine, with three small kids, we were very, very worried."

Eventually, following more tests at University Hospital Galway, 45-year old Leo was diagnosed with geographic atrophy. "This causes progressive and irreversible loss of visual function," says Leo. "Up until then, we'd always thought something would turn up. A solution was always found. So when the consultant at the hospital said, 'You need to prepare for the future,' we were absolutely stunned. There were so many issues - I wasn't thinking about myself, I was more concerned about the kids and how it would affect them."

Naturally, there were times when Leo was angry. It didn't help to be told that he was very unlucky; that people were usually older when they got this condition; that they may also be smokers and overweight, none of which applied to him. "I hated AMD because of what it did to me," he says. "I lost my career, and also a whole lot of personal freedoms."

Right now, Leo has no more than 10pc vision. "If you put three children over there, I wouldn't know if they were mine or not," he explains. "My central vision is a blur; I only see outline." He is also so light sensitive that he has to wear very dark glasses all the time.

Aisling recalls a particularly poignant moment in Leo's difficult journey. "The kids were playing on the swing. He said, 'I can hear them laughing, so I know they're happy, but I can't see them smiling.' It's the little things he can't do any more that makes it so hard," she says. "Lauren used to love going for a spin in the van with her dad, or riding her bike with him. He'll never be able to do any of that with any of them any more."

When Leo stopped driving, Aisling had to take over the steering wheel rather quickly, even though, at that point, she didn't even know how to start a car. But she practised relentlessly, and passed her test on her first attempt. It's just one of the many ways their lives have changed. Aisling has also had to give up her legal career so she can care for Leo, who can't go anywhere unaccompanied.

But forget any notion that this lovely couple is succumbing to despair. Far from it. "My life as I knew it is changed irreparably, and the loss of much of my independence is difficult to accept," says Leo. "That's where the NCBI comes in - they have been a huge source of support. I've used their counselling services and joined a support group. Talking is key - once you've voiced your fears, they don't seem so bad. It's also important to meet others in the same situation."

The next logical step for Leo was to join the Galway Visually Impaired Activity Club. "Leo was hesitant, but I said, 'No excuses'," says Aisling. Once they'd made contact, a member took Leo for a spin on a tandem bike, and he was soon smitten.

"To feel the wind in my face, to feel free again, jeez, that was something else. That gave me my first real ray of hope," he says. He is now in the process of buying a tandem bike so he and Aisling can head off on the open road. They are also doing aqua-aerobics together.

"I know I have a cross to bear," Leo continues. "But there are people out there much worse than me. I now realise life [in this situation] doesn't stop. It just slows down. I may be walking more slowly, but I'm still walking. I used to feel sorry for myself, but I no longer see it that way. Because of this, I spend a lot of time with my very special kids, and surely that's a gift?"

For more information, contact the National Council for the Blind in Ireland, see ncbi.ie

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