Father Tony Coote
The Dublin priest and MND campaigner talks to Darragh McManus as a new documentary about his work hits our screens
FA shock diagnosis and a rapid decline: Father Tony Coote has dealt with motor neurone disease with determination and positivity. He tells Darragh McManus that his faith and the support of many people have helped him, as he continues to raise money for MND research
ather Tony Coote is one of those inspirational people who leave a lasting impression on anyone who meets them. A native of Fairview in Dublin, his parish is across the river in Mount Merrion and Kilmacud.
An avid squash player for many years, in March, Fr Tony’s life was turned upside-down when he was diagnosed with motor neurone disease, the incurable neurological condition which progressively robs people of their physical faculties. He was 54. Undaunted, he organised Walk While You Can, a 550km trek from Letterkenny in Co Donegal to Ballydehob in Co Cork, to raise awareness of the condition and funds for research into treating it. This remarkable journey is the subject of Walking the Walk, a documentary on RTÉ One on December 6. The diagnosis was, needless to say, a massive shock, although Fr Tony had had an inkling that something was wrong after falling twice, in November and again on New Year’s Day. Still, when he received the news, he says, “I got such a shock that I actually fell on the floor. It was really an awful thing to hear. When you hear the words ‘motor neurone disease’, you also hear ‘no cure’. I’m only 54 and have only been to see a doctor three times in my adult life and that was for old injuries related to playing squash. And then this happened.”
His faith, Tony says, was “a big help” in dealing with these drastically altered circumstances. “I was very struck by the suddenness of change,” he adds, “but I’ve always believed in the mercy of God in all things and that did help me.
“What also helped was that my diagnosis came during the big freeze earlier this year, so I had two days on my own, thinking about the whole thing. That’s when I resolved to do a walk. Being on my own was a blessing in disguise. Otherwise, I’d have had people calling in and had no space, whereas as it turned out, I had time to let the whole thing seep into me.
“I told myself, alright, now I have this challenge: what will I do about it? I decided to do this walk. I am a fairly positive person anyway, by temperament; I don’t complain about something unless I’m willing to do something about it. I’ve always been like that. I like getting things done.”
Walk While You Can had three purposes: raise money, raise awareness and allow Fr Tony to “take a stand and do what I could still do.”
On that first one, he points out that there are just three nurses in the whole country looking after people with MND. Some other illnesses have several times that many for the same number of patients; Tony and his supporters want the government to appoint more MND nurses.
The walk also raised €520,000 – the original target was less than half that – which Tony describes as “mad, brilliant. It will go so far. And every €5 that’s donated counts for a lot. It all adds up.”
I’m on a fast train with too few stops
There was a lot of fun during the walk too, blessed as it was by the finest summer we had for years. Fr Tony remembers the whole experience as “just a great time. I remember all the people along the road who came out to encourage us, made sandwiches, made tea and coffee… every town and village we went to provided us with refreshments. Even a hot whiskey the odd time, which went down fairly well. My dad was from Ennis in Co Clare, and at one point we went through Crusheen (a nearby village) and the local pub threw a party for us – plenty of music! In another town, we held a raffle where the first prize was a heifer and the second prize was a tractor service: we were hoping nobody from Dublin would win it…
“There’s definitely something in the Irish psyche that makes us generous and welcoming. People really rally around and help out when someone else is in need. I’ll never forget being in small towns and villages which more or less shut down when all the people came out to greet us and have a party. It was lovely, I’d love to do it all again.” Sadly, Fr Tony reckons his time is short, months rather than years. He can’t walk any more and his speech has been affected. He says, “Now I can’t wash myself, clothe myself or feed myself. My MND is very bad: I’m on a fast train with too few stops. Other people are different; younger people live for much longer with it, for instance, but mine is very bad. Already, my system is under massive pressure, so it’s a matter of months for me, rather than years.”
He remains brave, determined and positive, a testament to an unbreakable human spirit. He says, “My attitude is that, in some ways, I’m like everyone else: I’ve to get up in the morning and face the day. It’s different than how it used to be, but this is my life and it’s the only one I have. I think the most important lesson I’ve learned is to adapt. I’ve lost much of my independence, so I’ve had to do a lot of adapting. But I’m very lucky, I have a lot of support. I never feel like this is too much.” See wwyc.ie for details on the Walk While You Can campaign