One day at a time

The clock ticks louder and faster for some and yet people as strong and as special as Anto Finnegan face down the end with a dignity and positivity to put us all to shame.

“How are you?”

It’s a question meant as much more than a greeting and gentle introduction. Anto Finnegan knows that by now and knows too that it’s layered and it’s deep and it’s searching and it’s hard.

“How is his body? How is his mind? How is his wife? How are their kids?”

You don’t need to say that last lot though.

“I’m okay I guess, as good as I can be under the circumstances,” he reflects. “My arms and my legs are the areas most affected so I’m using a wheelchair pretty much full-time now though.” If that sounds bad for a guy most remember as a beast of an intercounty player this millennium, then it’s not. When so much is being taken away, some remarkable people can still focus on what’s left.

Finnegan talks matter of factly about his illness but these past few days have been tougher than many of the others he’s lived with in recent years. On Monday, after the passing of Joost van der Westhuizen, he started to think of their meeting in Dublin in 2014 when he presented the rugby star with a ‘Game for Anto’ jersey, the charity match where Dublin played Ulster in Ravehill to raise money. They talked a little after, the South African about his J9 foundation, Finnegan about his work with his ‘deterMND’ trust that continues. And how they deal with the clock.

Those two should never have been linked if living were something else. Finnegan made his debut for Antrim in 1994 and wouldn’t win a championship game for seven seasons; Van der Westhuizen by 1995 was hauling down Jonah Lomu and hoisting the World Cup beside Nelson Mandela.

But living isn’t something else.

Towards the tail of 2008, Van der Westhuizen noticed some weakness in his right arm and chalked it down to an old sports injury; Finnegan a year on was driving his family to Disneyland Paris and shrugging off a soreness in his hands. By May 2011, Van der Westhuizen was diagnosed and told his doctor to just give him some pills; in August 2012 Finnegan was asking neurologist Paul McMonagle, “Okay, what next?” Both were given two-to-five years with Motor Neuron Disease.

Sporting worlds apart, the very real world together. “Obviously in fleeting moments the worst things go through your mind,” says Finnegan. “You have the same condition and that’s probably the natural reaction. Then you’ve to balance that out, in terms of how everyone’s condition effects them differently and you’ve to weigh it up in terms of the speed of your condition versus theirs. I think by doing that you can try rationalise it. Obviously it’s a shock though. Even when you don’t know them personally you are on that journey with them. So it can be a bit of a punch in the gut.”

As for his own body, it’s hard to define what shock is anymore as what once was shocking is now a brutal normality but normality nonetheless. As recently as 2014 for instance, Finnegan would walk the dog for six or seven miles to clear his mind. That part of his life is over though.

“You don’t want to accept it because you always want to fight it but you have to accept at some point it’s in your life. When you go to do things you used to be able to but now cannot, you’ve that constant reminder. But you look at the bigger picture – I’m a married man with a wonderful wife and two wonderful children. If I was to spend my days worrying about all the small little things that would have annoyed me in the past, I’ll be honest, my day would go by quickly. I can’t afford that. But you know when you start out in life you want a nice home and you want this and that? A lot is driven by having stuff and making your life as comfortable as possible and money in the bank and everything else. And I think when you live with this, you go passed that. Instead of collecting stuff like that, it’s more about collecting memories for yourself and your family and those close to you.”

One thing he’s always enjoyed is travelling and while the how changed, the why overcomes it. He still works away too, the day job as well as the charity organisation, making sure it’s not some sort of countdown. “Focus more on what I can do, not what I can’t do,” he said in an interview a couple of years ago. The body may not be as willing but the mind has never loosened it’s grip on that.

Finnegan is nothing new to media, and it times it can seem like an intrusive check in to see what’s the latest when the news will always be some sort of deterioration. But while he says MND won’t define him now or in hindsight, having started a charity to raise awareness and research money it would be disingenuous to refuse to talk about it. “Now there are days you don’t want to so you just don’t get into the finer details of yourself but mostly the conversations I have are more about the work we are doing rather than how the condition affects me day to day or my family life.”

If people interest you though, if mental strength interests you, if character you can’t understand interests you, then it’s him that interests you. We all may have an inevitable end, it’s just that our deterioration is slow enough to get by without thinking about it. You ask if he thinks about it.

“Never. Probably at the start because of the shock of the condition and you start to read about it and you see the standard prognosis of two-to-five years. But I was showing symptoms from 2009. So there’s the guts of eight years. I like to think I’ll defy any odds so there’s a belief, why those five years can’t be 10 years, 15 years. In thinking that way it allows me to do more than process dealing with the condition. In terms of how much time, trying not to have a sense of urgency to get everything done just in case. And that’s working okay for us.

But you’re at the mercy of the condition and when things change you just adjust to what you lose next. It’s difficult but you do it so you can continue to enjoy the good things. So I don’t really think about an end point too much, I like to live in the moment. What am I doing with my family or the trust in the next two or three or six months. What am I doing for work tomorrow? Looking any further beyond that you aren’t going to get answers, just undue stress and you forget to live.”

Do you ever get angry but don’t know what you’re angry at? Worse do you ever get angry where there’s literally nothing to get angry at? Finnegan refutes this. Never an angry person he admits that of course there’s moments of frustration but no more or no less. “I just won’t entertain anger. Because there’s no treatment, by setting up the trust, it’s our way of fighting back against the condition though. By doing something that contributes to research and hopefully finding something that allows people to live with the condition or find a cure is our way of fighting.”

In the last year it’s seen them make a second donation to Professor Orla Hardiman in Dublin who is running a worldwide research programme. And at the moment they are helping other people fund-raise with plans perhaps for something bigger themselves later in the year. But day by day.

“I would’t say we found peace,” he admits. “There are obviously times when you ask that question of why us, why our door and everything else It’s trying to keep those thoughts to a minimum and focus on what’s in front of us here now. We’ve a busy household. So we spend our time making sure all those things work rather than getting angry or dwelling on why. That’d just eat you up .”

He leaves to get back to the rest of his life, appreciating it more than most of us, wishing he’d an awful lot more of it than most of us. Then a message comes through from Finnegan. “This probably best sums up how we deal with MND,” he says and there’s a pause before another message.

Believe that further shore,
Is reachable from here.
Believe in miracle,
And cures and healing wells.
Seamus Heaney

Maybe some day an epitaph, you think. But not today as no illness can strip away his hope. 

Sunday Business Post
19 February, 2017

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: