EVERYONE who knew Ross Coakley, especially as he approached the end of his life, respected and admired him, writes Fergus Finlay
He was always lovable — full of fun and charm, devil-may-care, with an amazing gift for friendship. But as illness took hold of him, the character that emerged taught everyone who knew him a lot. In a way, he taught us how to die.
Ross was just around his 50th birthday when he — someone who had revelled in the outdoors, especially the wind and surf that goes hand in hand with kite-boarding —was diagnosed with motor neurone disease. He knew instantly what it meant, and what the outcome would be. He decided there and then to live his life, his way, for as long as he could.
MND is the cruellest of all conditions. The body fails, little by little. Dignity and independence are stripped away. But the mind remains as sharp as ever. If you suffer from the condition, you can watch yourself fading away.
Ross refused to fade away in any of the ways that matter. His humour never failed. No bitterness ever emerged. For as long as he could he kept what he called “the background noise” at bay by using his creativity and talent. And by surrounding himself with friends who would do anything for him.
In all of this he was supported by one of the most remarkable women you could ever meet — his mother Yvonne. From the moment of his diagnosis, she decided, quite simply, that she would do everything in her power to ensure that he lived his way, and died his way. Whatever obstacle needed to be overcome, she did it for the two years he had. She celebrated him to the end. And his character was worth celebrating.
I hope I have the courage, if I ever get a devastating diagnosis, to face it as Ross did. In a funny sort of way, though, Ross didn’t deploy courage. He used humour and wit and a sense of fun to stare his condition in the face.
I hadn’t intended to write about Ross, because his is a private family. But there was one experience along the way that (for me anyway) illustrated the best and the worst of the public service response to Ross’s condition.
Actually, there were many experiences that showed the quality of Ireland’s public services at their very best. The health and social services in his home town of Bandon were utterly supportive of him. Medical teams in Cork University Hospital, and the hospice care Ross received at the end, were exemplary. The Irish Motor Neurone Disease Association, which is itself a small NGO, provided extraordinary support.
But Ross needed a medical card, because the financial burden associated with MND is huge. Worse than that — he needed a discretionary medical card, because (believe it or not) you don’t get one automatically just because you have a condition that will inevitably, and dramatically, shorten your life.
And someone in a centralised, inaccessible bureaucratic system had decided he wasn’t going to get one. I know how inaccessible it is because I spent a long time trying to find it.
When I eventually got through to them, I asked about the 130 pages of documentation supplied by Ross’s family — much of it compiled with the help of social and health services locally. It wasn’t enough. This centralised office believed that there was something in Ross’s tax compliance history that made them believe he wasn’t worthy of a medical card.
They wouldn’t reassess the position, they told me, unless he could supply a tax cessation certificate — in effect a letter from the Revenue stating that his affairs were in order. They had asked for it, they said, and Ross had failed to supply it. That appeared to make them
believe that he was some sort of chancer.
Because Ross was beyond the point where he could take on a task like that, and because his family were at the end of their tether, I ended up having a conversation with a local expert who had interacted with Ross over the years. He was formal, and correct.
This is how the conversation went: Mr Finlay, I know Ross well, and he is a good man, battling a difficult situation.
He advised that Ross should apply to Revenue, request his file and then transmit it to me as a third party, although we both recognised how difficult and laborious that could be.
So how then could I answer the question that had become a brick wall? Unless I had Ross’s file with me, there would be no medical card.
After other conversations I had, another which went like this: I could perhaps read some things to you over the phone. I could for example read an email sent to the medical card people which included the relevant cessation certificate. If you had a pen and paper, you could write down the date and time sent. You would realise that they have had this information in their possession for a number of weeks now.
“You might like to note down the date and time that they acknowledged receipt of the information, by email, and advised that it had been added to Ross’s file.”
When I got back in touch with the centralised medical card office, I gave them the dates and times that they had received, and acknowledged, the information they said that Ross had failed to provide. There was a long silence on the phone, and then they said they’d get back to me.
They never did — that would have been too graceful. But a couple of days later, a letter arrived for Ross saying that it had been decided to grant him a medical card.
As I said, the best and the worst of the public service. A centralised bureaucracy sticking by the rules, and doing the heartless thing.
Those people who helped had no way of knowing it, but Ross had a hell of a wake — no tears, only fun, because it couldn’t be any other way with him. Late in the evening, we raised a glass to a decent and honourable act.
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