FR TONY Coote was just 53 in February 2018 when he was diagnosed with Motor Neurone Disease (MND). Just a few months later, he found himself confined to a wheelchair. But rather than succumbing to the darkness that threatened to overwhelm him in the days after his diagnosis, he drew on his powerful faith and unwavering belief in life and found a way to light, hope and acceptance.
During his first hospital appointment after his diagnosis, Fr Coote, who had only previously been to a doctor four times in total, and had never taken antibiotics in his adult life, was told to rest. But rather than slow down, his immediate thoughts turned to helping others affected by this disease – and just four months later, in July 2018, his 550-kilometre Walk While You Can pilgrimage began in Letterkenny.
The walk, which Fr Coote completed in his wheelchair, took 27 days to arrive in Ballydehob, west Cork, raising over €700,000 for the Irish Motor Neurone Disease Association. This money has been used to fund an additional MND nurse, as well as support ongoing research into the causes and treatment of MND and to fund an additional MND nurse in Ireland.
MND is a neurological disease that affects the nerves in the brain and spinal chord that tell the muscles what to do, thus impacting on a person's ability to walk, talk, eat, drink and breathe. MND affects everyone differently, with symptoms progressing at varying speeds. There are an estimated 400 people living with MND in Ireland and 5,000 in the UK. Devastatingly, MND cannot be stopped or reversed, but therapies, equipment and medication can help manage symptoms.
Fr Coote, a parish priest in Mount Merrion and Kilmacud in Dublin, documented his epic journey in the RTÉ documentary Walking the Walk and despite now having lost control of his voice, his message of "living every day in the now" can be found within the pages of his book Live While You Can.
His capacity to put others' needs ahead of his own didn't surprise his youngest brother Pat.
"Nothing surprises me about Tony. When he first told me about his idea of walking down the west of Ireland in the summer, I thought he was insane. I told him 'you are going to get drenched', but of course we had our best weather in years.
"However, when I had time to think about it I realised it was a great idea. Growing up around Tony, you would hear him talking over Sunday dinner about things such as setting up groups of volunteers to go to Haiti to build schools or provide drinking water – and three months later he was away. The walk was the same – he's a great ideas man," says his proud brother.
A former chaplain at UCD, Fr Coote was awarded an Honorary Doctorate from the university for outstanding service to the community in recognition of the role he played with the now nationwide student-led mental health movement Please Talk, and for his work in setting up UCD Volunteers Overseas.
In his book Fr Coote speaks of holding on to his faith through difficult times, including the loss of his baby brother, Alan, when he was just eight, his father's alcohol problem and his mother's recent Alzheimer's diagnosis. He also doesn't shy away from strong comments on historical clerical abuse and the 2009 Murphy Report into sexual abuse in the Catholic archdiocese of Dublin, saying "my priesthood is always lived through my own humanity and I am lucky that the people I served judged by what they saw and heard in me, even though they were hurt by what many in the Church had done".
Speaking of MND, Fr Coote writes: "The speed of change has been the most difficult aspect of my illness. Within a few months, I had become totally dependent. My faith has never wavered, and even now I believe more than ever that Jesus Christ is beside me."
Pat, who says his brother is currently in good spirits, adds: "All through our lives together Tony talked about his faith, but he never rammed it down our throats. But he always practised what he preached and that’s how’s he able to cope with this disease."
"Physically he’s gone full circle and is completely dependent on his carer but, generally speaking, he's in good form and staying positive. His acceptance and faith are keeping him in great shape that way."
Fr Coote also uses his book to gives readers many valuable lessons on humanity – including looking dying in the eye and remembering the person who was there before their illness.
"I remember when I used to visit those who had dementia, the best way to truly see them was to look into their eyes. In someone's eyes, you will always get a glimpse of the person they truly are. Sometimes you will even see a glint of the young boy or young girl they once were. Doing that has always brought me beyond the physical limits, so I do not see someone defined by their illness, I see a living person.
"I want people to look into my eyes and see beyond the contortion of my body. My body may look wasted and tired, but I bet there's always life in my eyes," he writes.
In the afterword of Fr Tony Coote's inspiring memoir, Archbishop of Dublin Diarmuid Martin says his personal story of compassion, determination and hope is one which will "change the way each of us looks at our own life".
I ask Pat if he agrees that his brother's book changes its readers in this way.
"It does because you realise that the material things aren’t that important. The basics of being able to move around, stand on your own and talk to your family – that’s what’s really important," he says.
:: Live While You Can: A Memoir of Faith, Hope and the Power of Acceptance by Fr Tony Coote is published by Hodder & Stoughton. For further support and information on Motor Neurone Disease see Mndani.com or Imnda.ie
