“When I was told, I was absolutely terrified. My body was just trembling I couldn’t believe it. I never felt so alone, I was really afraid.”
“’Life’s s***e’, the nurse said, just like that,” Fr Tony Coote laughs.
The former UCD chaplain and Dublin parish priest was diagnosed with motor neurone disease last March.
MND is a progressive neurological condition that attacks the motor neurones, or nerves, in the brain and spinal cord. It can affect how you walk, talk, eat, drink and breathe.
This summer, determined to raise funds for research on motor neurone disease, he walked from Letterkenny in Donegal to Ballydehob in Cork in 27 days. Fr Coote and his crew almost doubled their fundraising goal by raising €550,000. The people joining him included one of the first couples he married after he was ordained, his three brothers, other people living with motor neurone disease, and friends and family.
On Thursday night, RTE’s “Walking The Walk” documents Fr Coote’s odyssey down the length of Ireland in a wheelchair and gives an insight into the obstacles he had to overcome to complete the journey in Ballydehob.
The walk accelerated his condition, just as his doctor Professor Orla Hardiman had warned him before he set out.
In Thursday’s film, he shares his thoughts on losing the ability to walk, on the possibility of losing his ability to speak, and death itself.
“Death itself is not frightening. It’s natural to me to take a breath and go, I don’t want my life to be prolonged beyond what the breath can achieve.”
“I know people will say, ‘it’s easy now not to be afraid’, but I’m not, I’m truly not’.”
“Every day I get up and I pray for those with motor neurones, their families, and all those who have died. You’re always in my prayers,” he says to a gathering during the walk.
“Life is fragile, grab it with your two hands. Hold onto it – it’s all we know – and treasure it. Even with my illness now, I still treasure what I have. It’s a different kind of life but I still treasure it.”
The charismatic priest passed towns in Donegal, Sligo, Mayo, Galway, Clare and Limerick on his way.
“I took it for granted when I could walk… it’s no harm realising how powerful it is to be able to walk when you can’t,” he muses.
“It’s very different when you’re six foot one, and then suddenly four foot – that’s a big difference My soul is still the same I think, it’s just a mini me.”
“I believe there is a purpose beyond what we see and beyond what we are, and that fills me with hope.”
The priest describes how early on in his condition he fell and “smashed” his face just before he was about to say a graduation mass for young students. Even though he was in pain, he said the mass because he wanted to give the students a particular message.
“I tripped up over a feckin mat in the hall. I came down, smashed my face, but I said the mass not to be brave or a hero or anything, but I wanted to really say that message to the young people about the fragility of life. Hold on.”
Fr Coote admits that when he eventually loses his voice because of the condition, it would be akin to losing his identity.
“Psychologically that’ll be a mind bend beyond what I could comprehend”
“I’ve never been patient, and Jesus I’m patient now.”