Wednesday 7 December 2016

Seeing the light despite degenerative eye disease

John Delaney has had to deal with degenerative eye disease all his life. But, he says losing his sight has brought rewards, including a career change

Joy Orpen

Published 06/04/2015 | 02:30

John Delaney (55) one of the founding members of Fighting Blindness. Photo: Tony Gavin
John Delaney (55) one of the founding members of Fighting Blindness. Photo: Tony Gavin

John Delaney (55) says that while losing his sight has been very "challenging", it has also been a very rich and rewarding experience.

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For those of us with no real problems seeing the world about us, this may seem like an extraordinary statement, yet it is one that John is keen to emphasise. He says that even though his journey through life has been hugely influenced by having a disability, it has brought him great gifts as well.

John, who grew up in Glenageary, south of Dublin, isn't clear when his late parents twigged that something was wrong. It was, he imagines, a gradually unfolding process. "If I dropped a penny on a dark carpet, I wouldn't be able to see it," he recalls, "but my sister would."

When he went to school, he had trouble reading and making sense of what was on the blackboard. There were times he (happily) missed school because of visits to doctors. On one particular occasion, his father took him to St Michael's Hospital in Dun Laoghaire, where he was seen by an ophthalmologist.

Read more: 10 gadgets that can help the visually impaired

Afterwards, John went home by bus, while his dad went back to work. Later, his mother received a phone call. "I remember, after the call ended, she went upstairs to the bathroom, closed the door and started crying," John says. He is pretty certain that his father phoned to relay the news of a devastating diagnosis - that of retinitis pigmentosa (RP).

It would seem that Irish society in the 1960s and 1970s was unable to talk openly about the problems that many people faced, while doctors were sometimes slow to communicate with patients. This would have applied to John's parents. "I don't think they were given the information or resources that they needed to cope with my problems," says John. So the proverbial elephant in the room became the beast that he, as a little boy, had to tame almost alone.

Read more: The impact blindness has had on my life and family

The term RP refers to a group of inherited diseases that affect the photoreceptors - the light-sensing cells - located in the retina at the back of the eye. This results in a failure to properly transmit images from the eye to the brain. About 1,500 people in Ireland are affected by RP. And while the mutation of many different genes may be responsible, the consequences also vary enormously. "It's a slow, degenerative condition," explains John. "The rate at which it progresses varies from person to person."

As a child, he had to keep his wits about him to stay on top of things. "I became resourceful, tenacious and independent," John says. "At secondary level, I was struggling to keep up. So I left school seriously undercooked."

John's grades weren't good enough for third-level education. Yet, in conversation, he is a fast-talking, extremely articulate, and clearly a very intelligent man. So his failure to get to university wasn't because he lacked the ability, but can be ascribed to the sad fact that he wasn't given the supports that he needed.

Nonetheless, John joined an insurance company - which is now part of Allianz - and he spent almost 30 years there, rising to a fairly senior level in the claims department. That's where he met Georgina Kavanagh, his future wife. John credits her with giving him the tools he needed to square up to his visual problems.

Read more: The simple test that could save your eyesight

"I didn't think I had the language to discuss the subject," he admits. "Sometimes we think it's best to hide something under the carpet. But Georgina was having none of that. She said everything in our marriage was negotiable, except good communications. I was good at talking around things, but she put a stop to that; she's a very perceptive person."

Some 25 years ago, their only child, Gillian, was born. She is now pursuing an acting career in London and they are enormously proud of her.

In the early 1980s, John met Michael Griffith, "a powerhouse of a man" who was also living with RP. These two became part of a larger group that met on a regular basis to help deal with the problems of deteriorating eyesight. They became the founding members of Fighting Blindness (FB) and decided that if research was what was needed to find treatments and cures, then they would help fund that research.

In one 12-month period in the 1980s, they raised IR£500,000 towards a project at TCD to examine the genetic "course" of inherited RP. That very team discovered the first of many genes responsible for causing the condition. Since then, FB has invested €15m in 70 different research projects in Ireland. Their work looks into age-related sight problems as well as genetic disorders. FB has strong ties with international organisations seeking ways of dealing with problems such as RP.

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So John has always been a great supporter of the work that FB does. But more recently, his life took a strange new twist, when he was invited to run FB's counselling service.

How, you may ask, could that have happened? It evolved thanks to John's decision to reinvent himself. "Having spent nearly 30 years in the insurance business, I'd always promised myself I would never become a 'passenger', I would always earn my salary. But a while back, even though I worked for a good company and had great colleagues, I felt something was missing; that I needed more to sustain me. So in 2006, I began studying to become a psychotherapist and, in 2012, I was finally accredited," he says.

By the time he began to study, John's sight was almost non-existent. He was looking at the world through a fog and might or might not, depending on the light levels, detect movement. So he used a special programme on his computer that "read" the prescribed texts out loud to him, and that is how he worked his way through the highly complex and very wordy syllabus of his course. So, in spite of the challenges, he has fulfilled his potential after all. John sees people who are at all sorts of stages with sight loss. "I help them relate to life in a different and hopefully more meaningful way," he says. "Positive change is always possible."

His chief regret is that he cannot see his beautiful wife Georgina, nor their daughter Gillian; as he volunteers this, tears slide from his eyes.

Otherwise, he says life is good. "This has been a very enlightening journey," he says. "It has given me the opportunity to look at myself, and to change. If someone offered me a cure tomorrow, I would need to consider the implications for the person I have become, before deciding to accept or not."

For more information on Fighting Blindness, 3rd Floor, 7 Ely Place, D2. tel: (01) 678-9004, or see fightingblindness.ie

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