A new way of seeing the world: Peter Ryan talks about losing 90% of his sight in his early 20s

When Peter Ryan lost 90% of his vision in his early 20s, his readjustment was emotionally painful, but maturing, says Helen O’Callaghan

PETER Ryan thought contact lenses were the answer when he started making “silly mistakes” during hurling matches. He was 20.

“Half the team had contact lenses. I thought that’s what I needed. I wore glasses for driving, so I thought it was natural progression,” says Peter, now 29. But the mistakes on the pitch weren’t ordinary ones and the Tipperary man felt uneasy. “I had good hand-eye coordination, so it wasn’t that. I had a gut feeling: this isn’t my form, something’s up.” At the optician’s, he read the letters perfectly with one eye, but with the other it was like he had a grey cloud in his central vision. “We thought the glass was fogged, but it wasn’t.”

Over the following months, Peter had tests and check-ups (“some were very daunting”) and was diagnosed with Leber’s Hereditary Optic Neuropathy (LHON), a rare genetic form of vision loss. “They said I’d lose my central vision over a period of nine to 14 months. It happened pretty much as they said,” Peter says.

With 85-90% of his sight lost over two years, Peter’s head spun with what-ifs (“the age demographic for LHON is 14 to 20. I’d nearly been out the gap”). He felt “waves” of fear. “Being told I’d be legally blind was a clinical diagnosis. It wasn’t a holistic or emotional one. I got told the practicalities, but a diagnosis is a lived thing. You’re not a patient, you’re human, and you don’t get told how to walk the walk,” Peter says.

His identity, as a young, able, sports-loving man, under siege, Peter felt isolated. He was in denial. “I didn’t want to be visually impaired or legally blind, so I was trying to do it myself, put up a front, pretend I was ok. I was trying to be the 20-year-old me that could play sports and drive a car,” Peter says.

The welding-and-fabrication company he worked for as a plasterer was “brilliant,” transferring him from Dublin to a job nearer home, in Thurles. “During a crazy time, they gave me a reason to get up in the morning. It was one less thing to worry about. Over the next 14 months, everything changed. I was shedding my identity. It touched everything from using a mobile phone or washing machine to TV, playing sport, and driving a car,” he says.

From a supportive family of nine siblings, Peter wasn’t “the best version” of himself. “I was in my own insular bubble, pushing away my family’s help, but they were always there for me.” Early 2012 was the worst. “Everything came to a head: no work, no sport, no driving. I was drinking. By August 2012, I ended up in a treatment centre.” It was a turning point. “You do a lot of self-exploration in 28 days of counselling,” says Peter, who continued counselling post-treatment. “I had a lot of hang-ups about being visually impaired. It played into being a young man and vulnerable. I was forever comparing this me to the old me. I had to acknowledge and accept that me was gone. So I was in this tug of war between my old life and this new world.” Acknowledging that the disability wasn’t a terminal illness and that he would have to cope, Peter distilled down what it meant to be visually impaired. “I needed to rid myself of the idea that it was a calamity and to take it on as a challenge. I was in a position where I could create a new me. I could get to build a new life,” he says. Instead of focusing on everything he couldn’t do, he decided to “test the theory” on what he could do. “It wasn’t eureka. It was practical, applied growth. There was a momentum and buzz that came off doing something I thought I couldn’t do before,” Peter says. An example was relearning to use a mobile phone. “I’d been afraid of using audio technology, thinking, ‘I’m 22, what if someone hears my phone talking?’ But it was about getting out of my own way — if something made life easier, just go with it.” In late 2012, Peter attended a Paralympics open day in UCD. “I had the itch to get back into things I thought were gone. I wanted to meet people in the same boat, the same age bracket, who were into sport. I wanted something testing that would satisfy that competitive side. I thought cycling could be worth getting stuck into.”

In 2013, Peter was national para-cycling champion in the 40km time trial. He secured eighth place at the World Championships in 2015 and qualified for Rio 2016, where he competed in the road race and time trial with tandem pilot, Sean Hahessy. He is now aiming for the Tokyo 2020 Paralympic Games. Other achievements include winning Tipperary ‘Person of the Year’ and recently becoming a Fine Gael councillor.

He’s grateful he still has peripheral vision (“every percent I have, I utilise to the nth degree”) and for the emotional maturity he gained through his 20s because of his diagnosis. “I know now I completely ignored letting the grieving happen. I tried to act normal. But when something abnormal happens, it’s not normal to be normal. The best thing is to let it out, and then start walking,” Peter says.

On Saturday, November 16, at theRetina annual science conference organised by the charity, Fighting Blindness, people will be able to ask the experts questions such as: Is there anything I can do to avoid passing my genetic sight loss condition onto my children? How long before I can expect a treatment to stop further deterioration of my sight? What research holds the most potential to save my sight?

The three-day Retina gathering, which is being held during Science Week Ireland, celebrates 20 years of bringing together the foremost international minds in vision research. It’s an opportunity to hear about global research and new technologies and efforts to find treatments/cures for a wide range of conditions that cause vision impairment/blindness.

With sessions on more than 20 sight-loss conditions, Professor David Crabb, of City University of London, is one of the speakers. He has developed a diagnostic tool for glaucoma that simply involves watching a TV programme. Prof Crabb compared the eye movements of a fully-sighted person with a person with glaucoma and found the glaucoma patient showed a particular signature pattern of eye movement.

Currently, tests for glaucoma include ‘air puff test’ (non-contact tonometry) or perimetry (person looks inside bowl-shaped instrument and presses button every time they see a flash). These tests measure inside-eye pressure and track peripheral vision loss, but they can be disconcerting and uncomfortable. “This new test is in the early stages, but has exciting potential,” says Professor Crabb, explaining that it will be a much more comfortable, convenient test for patients.

Pointing out that “our eyes are not designed to last 100 years,” he says conditions like macular degeneration and glaucoma are becoming more prevalent as we live longer. These conditions are troublesome, because they’re stealthy and they’re irreversible. “People can have them and not be aware. By the time they have symptoms, they’ve already lost a lot of vision and we can’t bring vision back,” he says, recommending that people over 40 get regular eye tests.

Opportunity for people living with sight loss to ask questions of eye experts at Retina 2019 public engagement day (Saturday, November 16) at Radisson Blu Hotel, Golden Lane, Dublin 8. Register at www.retina.ie, if interested in attending.