I thought I needed glasses. The doctor said I’d be blind in a month
‘My mom and I were both trying to keep up a front. I think. We were sort of a bit numb’
Wesley Bourke at home in Celbridge, Co Kildare. Photograph: Dara Mac Dónaill
Wesley Bourke, founder and editor of ‘Ireland’s Military Story’ magazine, in the Defence Forces
Wesley Bourke wasn’t born visually impaired. In fact, the editor of Ireland’s Military Story magazine grew up imagining he would be the story rather than the one that tells them.
Having always wanted to join the Irish Defence Forces and learn to fly aircraft, a young Bourke signed up as an apprentice in 1994, aged 16.
For the first couple of years, he was living his dream life, but by the time Bourke was 18 things were changing and his dreams of flying were becoming an impossibility.
“I was reading a book and not focusing well,” he says. “I used to build model aeroplanes, then I was making an absolute mess of them. At the time, I didn’t take any notice of it. I was just thinking: ‘I’ll drop down to the doctor and get glasses. Maybe I just need reading glasses.’”
It was during a mountaineering course with his colleague Mark Elliot that the problem became more obvious.
“I had the map upside down and I was giving wrong compass bearings,” Bourke says. “I had also started knocking over pints, just doing goofy, clumsy things.”
Bourke’s experience with the army doctor raised a red flag straightaway. Able to read all the lines on the wallchart with his left eye, with his right eye he couldn’t make it out at all. “I said: ‘Okay, sir, can you put the chart back up on the wall?’ He thought I was actually messing at one stage, but then had to explain to me that the chart was embedded on the wall. It was there.”
However, Bourke just couldn’t see it with his right eye.
Visits to the eye and ear clinic did not identify the problem, but one day he heard a familiar voice in the waiting room.
“I was in there and I heard a voice down the corridor – it was my grand-uncle,” he says. “He went totally blind, but at the time none of us knew why. I still think it was weird that he started losing his sight exactly the same time I started losing mine.”
He found out that a number of family members had lost their sight in later life due to Leber’s hereditary optic neuropathy (LHON), a painless loss of the central vision of the eye.
The day Bourke told the clinic that his family had a history of LHON, he was told there was nothing the hospital could do for him and he would be completely blind within a month.
“My mother just happened to be with me that day,” he says. “You don’t know what to do or think because all of a sudden the life as you know it is now gone or will be gone potentially within a month. We were both trying to keep up a front, I think. We were both sort of a bit numb. She had to drop me back to Baldonnel [aerodrome] because we all lived in at the time and you couldn’t just decide to go home if you felt like it. I’m sure she wanted to bring me home.”
A few days after the diagnosis, Bourke’s father relayed the news to a doctor he knew. Within 24 hours, Bourke was seen by a neurologist, Prof Staunton. “He said: ‘Time is against us here. I don’t have a cure for you, but we have to try and stop it.’ He filled me full of a cocktail of steroids – as he called it at the time – and a few other bits and pieces. Whatever he did, he stopped the deterioration; he stopped it in his tracks. It hasn’t got any worse and it stopped me from going, as the eye and ear predicted, completely blind within a month.
“My central vision is very badly affected; my right eye is extremely bad. If I cover my left eye I wouldn’t be able to see you at all. I might be able to see your feet or your arms. In my left eye it is bad, but it’s the only one I use so there is still a bit of vision in it. I can’t make out any facial features, but I can make out a head. If I get close I can make out eyes and nose and mouth, but I can’t make out any scars or things like that”
Bourke was then labelled disabled, something that initially didn’t sit well with him.
“I say ‘visually impaired’ because . . . I want to indicate that I have some sight,” he says. “At the time, they were trying to teach me to use a cane, which kind of helped at the start because I was still being clumsy; I wasn’t adapting to my vision. But I got rid of the blind cane very quickly. I found people started treating me differently, as if I was stupid because I had a cane. I also started to learn Braille, but to be honest it’s something you want to pick up when you’re a kid. Even in the late 1990s I was thinking surely there was some computer software I could get away with.”
Bourke then moved to a specialist school to complete his Leaving Certificate and went on to qualify as a journalist. He worked as a journalist for the Defence Forces, reporting from home and abroad, and more recently has started his own publication.
Although he has forged a career and a new lifestyle, he found adjusting to his condition difficult mentally, especially a couple of years after the initial diagnosis.
“Reality started to kick in,” he says. “What can you do with the rest of your life? And back then the options for you were very limited. I still had in the back of my head that at some stage my sight could go worse, and what would I do then?
“It was a real pain having to get the bus everywhere, or getting lifts everywhere, but at least I had some independence. So reality kicked in and depression also kicked in. It was also around the time I was suffering with chronic fatigue. I was permanently exhausted all the time – that in itself would drag anyone down.
“I’d get stressed and become more depressed – it was a constant knock-on effect. It was like going around with two 50kg weights tied to each hand. You are just constantly being dragged down. I was extremely stubborn, but I eventually went to speak to someone in 2004. She is a lovely lady; I still see her, and it was a godsend. Ten years ago I wouldn’t have spoken about any of this, even five years ago I wouldn’t have.
“My condition does have an effect on my personal life . . . When I was in my 20s I didn’t like myself, I had zero confidence, no self-esteem, so if anyone was interested in me, straight away I’d say no,” he says. “But since 2011 I’ve had a few lovely girlfriends and was even engaged for a while; it just didn’t work out. You have to learn how to date again, you have to learn how to be in a relationship again. It’s important.”
Read Wesley Bourke’s blog at http://labelleddisabled.blogspot.ie