THE 30TH OF March 2010 was dubbed Doomsday Tuesday in Ireland.
It was a cold, miserable day when the Minister for Finance Brian Lenihan walked into the Dáil chamber to introduce a raft of measures which revealed more about the ever-growing banking crisis.
“At every hand’s turn our worst fears have been surpassed,” the deputy said.
At the same time in a Dublin hospital, RTÉ’s Colm Murray was realising his worst nightmare, waiting to be told ‘the last thing he wanted to hear’.
Telling his story publicly, he later recalled:
“… It was the very thing that I was absolutely in dread of. Of all things going, I used to pray to God, ‘Please, don’t let it be motor neuron disease.’”
But that’s exactly what the doctor was saying. The words were remembered easily:
I’m sorry to have to tell you, that in my professional opinion, you are showing all the symptoms of a patient with motor neuron disease.
“The weather and everything to do with that early morning matched the plight of the economy, the seriousness of the Dáil announcement and the news that I was getting there and then…. around breakfast time in the Hermitage clinic,” the broadcaster told the country in his brave documentary.
The call his cousin, friend and surrogate son Cathal Murray received that day is also one he’ll never forget.
A fellow RTÉ man, Cathal was in Dingle when the news landed on his table. Excusing himself from the restaurant he was dining in, he took that phone call.
“I froze because I had a fair idea what the condition was like.
“I had seen him a number of times just before then and thought he was a little off. It was a limp first – something he noticed while out walking with friends in Clontarf.
“That initial diagnosis was dreadful for him, his friends and his family. He stayed at home and took it all in, taking some time to deal with it.”
But soon, Colm’s inherent nature kicked up a gear – inspired by the horses. What else?
“He visited Willie Mullins’ stables and watched him train the horses. It encouraged him to get back out there and see what he could do. A switch flicked in him.
“It was totally inspiring. He underwent trials for new drugs, he made the documentary, he was very public and did everything he could to raise awareness.”
He also continued to work, appearing on television screens across the country each night.
MND starts out differently for each patient. For Colm, his speech was “one of the last things to go” – something his family are grateful for.
“His speaking voice was remarkable,” according to Cathal – and anybody who ever heard his programming.
“I remember he would be at the Six One New and you’d barely make out that he was in a wheelchair.”
Eventually though, it became more difficult to get the job done. Reports were harder to compile as MND took control of the voice.
In his words, he benched himself once “the quality wasn’t there”.
As MND’s grip tightened on the Murray family, Cathal spent more and more time with his good friend.
When you spend that much time with someone who has a line on the horizon, you have incredible conversations, there is no bullshit anymore. It is a pure honesty and affection that would overawe me at times.
“We had nights in with a Hennessy or two, films, family chat and jokes. It was really special and really difficult. They are days I’ll never forget.”
But there was one more tragedy to hit. After Colm’s voice had failed and he could no longer communicate, his younger sister Cathy suffered a heart attack and died.
Telling him that dreadful news, seeing him internalise that pain and be in that hell was worse than bad.
But again, friends and colleagues rallied. RTÉ broadcast her funeral into his home so that he could pay his respects and see her farewell. The same friends visited each night, helping him live comfortably, wax lyrical about the old days and tell him the political gossip.
Almost three years on from Colm’s death, Cathal says the family is “as well as they can be after losing someone as larger than life” as his cousin. Later this month, he will speak publicly about their loss for the first time, hoping to carry on the tradition of raising awareness.
At The June Ball in Dublin, he will remind the 850-strong crowd – all there to support the Irish Motor Neurone Disease Association (IMNDA) – of “the man who was and the man who was with MND”.
He takes over the microphone from Paul Lannon, one of about 330 people in Ireland now living with the condition.
The 46-year-old gave the keynote speech last year with an aim to “pull on the heartstrings and release the purse strings“. A year on, and speaking to TheJournal.ie again, he is says he is still on the circuit making people “ruin their own makeup with tears”.
However, the condition has had another 12 months to disrupt his abilities.
Although he is still eloquent in our conversation, he says his speech has suffered since we last spoke.
“My legs and arms are starting to get weaker and I have limited function,” he adds.
Fatigue is also a big thing now. I need a lot more help now and my wife has given up work to become an almost full-time carer. I also have other carers coming every day.
“I can’t get my arms above chest height so, as you can imagine, washing or brushing my hair or putting a t-shirt on is impossible.
“Although my five-year-old neighbour can beat me at an arm wrestle, at least I still have some strength.”
Paul still also has his “good spirits”.
“I have the bad bad days but being positive is always at the forefront to me. The last few weeks of sunshine have been brilliant as the colder weather is harder. If I won the Lotto, I’d buy a house in Spain for the winter.
“It really kills me… My circulation gets worse and it exasperates the situation. My hands don’t work and they get even worse when they’re cold.”
But Paul makes things work.
Yesterday, he was race director for the 2016 Cycle from Dunleer to Kilkenny in aid of IMNDA and Paul’s Fight 4 Life.
Making more than 100 calls (“Luckily, I’m hands-free in the car”), he was the liaison officer for the emergency services, gardaí, local authorities, racers and support teams.
There are more limits now though because of his condition.
“They wanted me to come to the summer ball but the cycle takes a lot out of me,” he admits. “It is an amazing event and I’m sorry to miss it.
“Whenever IMNDA ask for my help, I give it. All of these things raise awareness and every little helps. The ice-bucket challenge was a great campaign but that was two years ago and the money runs out.”
Just this year, Paul received a “fabulous tool” which allows him to stay online.
“It’s a tablet with built-in cameras to focus on my pupils,” he explains. “The mouse moves at the same time as my eyes. It allows me to type. It cost €17,000 though.
“Multiple that by 300 for everyone who needs it and that’s a lot of money.”
Expensive equipment like this – and the breathing machine he uses – are provided by the HSE and IMNDA if the State isn’t in a position to resource them immediately.
“Time is the issue with it as well,” he adds. “You can’t afford to wait six or eight weeks. I presented with breathing difficulties and it needs to be there straight away.
“That’s not always possible with the HSE’s budgetary restraints so 90% of the time, the association fill that gap.”
You can hear Cathal talk at the third annual The June Ball which will take place Saturday, 25 June in the DoubleTree by Hilton, Dublin.
Tickets for a night of dinner, dancing to Smash Hits and prizes (including Beyoncé and Longitude festival tickets) are €90 and available here. Find out more on Facebook and Twitter @thejuneball.
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