Fr Tony Coote Fr Tony Coote describes how he was first diagnosed with motor neurone disease
I woke in my house in Mount Merrion, Dublin around 6.30am. I hadn’t had much sleep. I had an appointment that morning in the Beacon hospital. I went to the window; the whole area was covered in snow. Normally on a Wednesday I would have had my parish duties to attend to, but that day the entire country was at a standstill owing to the heaviest fall of snow in years.
At around eight I phoned the hospital to say I was postponing because of the weather. However, when I looked out again an hour later, I saw cars making their way up the road, so I decided I would head to the Beacon after all.
My appointment was with a neurologist for 10.30am and we were to discuss the results of a brain scan I’d had about 10 days earlier. The reason for the scan was because I’d had two falls.
The first was in early November when I was coming down the steps of Saint Thérèse church in Mount Merrion. I was carrying a box and suddenly, without explanation, I fell, hitting my shoulder off a wall and my knee on the ground. An elderly man who was passing helped to pick me up. “Offer it up, Father,” he said. I was convinced I was rushing, as usual, and had just missed a step.
No reason
Then on New Year’s Day various members of my family were visiting for lunch. Just before dessert, I went in to the sitting room to put some logs on the fire and I suddenly fell face down on the floor, again for no apparent reason. Everyone came running and I heard someone say, “He’s had a stroke.”
Gently, they tried to lift me and were encouraging me to use my left hand to raise myself up. I told them I had no power in that hand, which seemed to confirm their suspicions about a stroke. Eventually they got me onto a chair and advised me to go to a hospital or call a doctor. I protested that I just needed some time because I was in a state of shock.
My guests started to leave, but only after making sure I had water and was okay to stand up. Over the next few days, my brother Pat stayed in touch to remind me to make an appointment with a doctor. I had only seen a doctor three times in my adult life, all in relation to issues with my elbow from playing squash. It took me two days to call a GP, who prescribed anti-inflammatory pain relief and advised me to take two weeks off – which I spent in Glendalough – to allow my knee and leg to heal because I still had pain there.
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During this time, I noticed that my knee wasn’t particularly swollen, and yet I still had pain there, and also in my shoulder. I asked my GP to arrange for me to have scans of both. The results showed nothing sinister, just the expected tissue damage, so she referred me to an orthopaedic consultant in the Beacon and also a neurologist.
A week later I met the orthopaedic consultant, who had reviewed my scans, and he said that there was nothing there that he could detect. He asked me to describe any particular symptoms I was experiencing, and I said that sometimes my leg went into an involuntary spasm and began to shake. He said this was known as clonus, and I read something in his face that suggested it might be serious.
He asked if I intended to see a neurologist and I told him I had an appointment for later that week. The neurologist said that some of my symptoms were consistent with a stroke, but she couldn’t detect anything definite and so arranged for a brain scan. Those were the results I was waiting for on that February day.
And so it was that on that snowy morning in February I was heading to the Beacon hospital. And yet there was a nagging feeling within me that said if it had been a stroke, I would have been called back sooner. Perhaps that was why I hadn’t slept much during the night.
Neurologist
The hospital was mainly deserted except for a few staff who had braved the weather. My neurologist took me into a small bay behind a curtain and began to give me the results of my brain scan. She said that a radiographer and consultant radiographer had initially seen nothing in the scan but when she looked again she saw what she called scrapings, which told her I had motor neurone disease (MND). She asked if I had considered that possibility. I said I hadn’t, that I had resisted researching my symptoms online to find out more.
I have thought about this many times since: what a cruel test for such a cruel illness – sticking needles into muscles, inflicting pain…
At the time I knew very little about MND. I know far more now, of course. Motor neurone diseases are a group of neurodegenerative disorders that selectively affect motor neurons, the cells which control voluntary muscles of the body. Each motor neurone disease affects patients differently, but they all cause movement-related symptoms, mainly muscle weakness. The rate of progression can be very different: some patients will be relatively symptom-free for years, while others will have a much faster onset.
Tests
I can’t say what was going through my mind at that moment when the neurologist first mentioned MND, but on reflection I suspect that my body was going into shock.
She asked me to undress because she was going to carry out some tests that I later learned were called electromyography (EMG), and a nerve conduction test that involved sticking needles into my muscles and applying electroshock to my feet, which would give her readings on a laptop.
The readings were not clear, so the consultant had to twist the needle deeper into my muscles. I have thought about this many times since: what a cruel test for such a cruel illness – sticking needles into muscles, inflicting pain when so much pain would be on the way.
The tests took well over an hour, after which time the consultant said that there was one more place where she had to put the needle – in my tongue. “No way,” I said. “I’m not having that.” “I understand,” she replied sympathetically. “You’ve had enough for one day.”
She left me to get dressed. However, there was a lot of gel still on my hands and arms that had been applied before the tests, so I went to the sink to wash it off.
Turning around to put my clothes back on, I fell flat onto the floor. This wasn’t quite like previous falls. I think it was shock this time that raced through my body and flung me down. The consultant came back in. “Oh you poor man,” she said. I left the hospital and drove home through empty streets as the snow continued to fall.
Everywhere was white and still and unfamiliar, outlines changed by the blanket of snow and the whirling flakes. My mind was full of thoughts about what would happen to me, who I would tell and how. Reaching home, I went straight into the sitting room, still in my coat, the ticking of the clock the only sound I heard.
For some time I just stared out the window. I watched the world outside and it was peaceful, with hardly a car passing or a person walking by. I stood there for some time. I suppose I was letting the news I’d received seep into me and land there, amid feelings of confusion, fear and terror.
I understand why people, when going through difficult times, might be angry with God and might give up their faith
Later that day I contacted my brothers – Pat, Kieran and David – to tell them the news. Pat and Kieran both live in Dublin, while David is in Australia. There was, I think, a mixture of shock and confusion when they heard. Like so many people, they didn’t understand the full weight of my diagnosis.
I then phoned the Archbishop of Dublin, Diarmuid Martin, to tell him my news. That summer, I was due to move from the parishes of Mount Merrion and Kilmacud, where I had served for nearly 10 years, and I asked him if I could remain in the post since I knew so many people there.
I feared that by taking up a new appointment, I would arrive in a new place, a stranger, and would inevitably be known as ‘the sick priest’. To my relief, the archbishop agreed and assured me that he and the diocese would help me in any way they could.
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After making my calls, and when one of the neighbours had supplied me with fire-lighters, I settled down in front of the blazing fire with a glass of rich red wine. I went to bed late and didn’t sleep.
My mind was spinning, thinking about how the diagnosis would affect my life. I tossed and turned, probably for most of that night. Of course, the night has a tendency to magnify everything. In its stillness you know – and I surely knew that night – that you are alone.
Vulnerability is never comfortable, because everything you have learned to count on seems uncertain, but it can also summon possibilities. All my life I have been a carer of one kind or another, especially through my priesthood. At ordination
I was called to be one who serves, and that is what I have been.
As a carer, I shielded myself from receiving care from others. While I responded to vulnerability in others, I had yet to learn how to acknowledge my own vulnerability. However, from early on in my diagnosis I knew people wanted to help and that this desire of theirs was genuine.
There was a huge outpouring of support. I received hundreds of Mass cards and letters. People were telling me that they were lighting candles in the church for me and indeed I felt the strength of this support. People also dropped a range of gifts at my door, including home-made cake, marmalade, biscuits, chocolate, flowers, and of course red wine.
I suppose at this time too I was slightly embarrassed by all the attention and had to begin to understand that when you give, you must also be prepared to receive. I knew too that if I started to refuse help, gradually it would stop being offered. In a way then it was an easy choice: I needed help and I had to accept it. In the early days, this meant accepting help to carry shopping from the supermarket to my car.
It meant asking someone to tie my shoelaces since this was one of the first things I discovered I couldn’t do by myself. I needed to be helped in and out of my car. I alternated between the wheelchair and a walking stick. When I was walking with the stick, I moved very slowly, as the tiniest obstacle on the footpath could trip me up.
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I understand why people, when going through difficult times, might be angry with God and might give up their faith because they wonder, “What’s the point? Nothing ever changes.” Others might say, “We’ve had to bear much more than other people, so why us?”
Since I received my diagnosis, I have been asked if I ever think, Why me? and to that I say, “Why not me?” Why should I not bear some of the suffering that is in the world today?
Anyone who has faith knows that it will be tested from time to time. We might hang on to our Faith by believing that nothing can assail us, but the challenge is always to find our Faith in the more difficult moments. It can be easy to believe in the sunshine, but much harder in the rain. This is not me being brave for the sake of being brave. This is what I believe, and that’s why I can say that I don’t believe we are heading to a future of emptiness, but rather a destination of hope.
Live While You Can by Fr Tony Coote is published by Hachette Ireland.