Longford Westmeath TD Nicky McFadden has spoken of her shock at being diagnosed with motor neurone disease and of her hope at finding a potential cure for the illness.
Just days on from her decision to go public, the 49-year-old this week vowed to press ahead with her duties as a government TD.
Speaking at the weekend, the mother-of-two said she remains fully committed to her work and the 6,129 voters who elected her 14 months ago.
“I will never, ever pack in politics. It means too much to me,” she said defiantly. “In Athlone I have to retain the brigade. I have to get a new gym for the regional sports centre. And I need a new dressing room for the little theatre. I am totally committed to getting on with that work.”
After months of not knowing what was wrong and surmising her various symptoms were brought about by an infection in her windpipe, Nicky eventually learned of her illness three weeks ago.
Dubbed the ‘1-000-day’ disease due to the life expectancy of recently diagnosed patients, she can still recall the exact moment her world came crashing to a sudden halt.
“I was just in shock for a second. I stamped out of there,” she admitted, after the country’s leading neurologist, Professor Orla Hardiman delivered the news at Dublin’s Beaumont Hospital.
“I was so bold. My sisters were very polite. On the way out I asked Professor Hardiman, ‘Do I need to pay you?’ She said ‘No’, it was a public clinic. I asked her: ‘Then can I have the prescription to prolong my life.’ She was so gracious and direct. There was no beating about the bush.”
Taking time to digest the news, Nicky said even greater emotional strain was to come as she relayed the news to her son, Eoin and daughter, Caren.
“They were both devastated,” she confessed. Relaying the same course of events to her 82-year-old father was an altogether different affair.
“That broke my heart,” the former community worker added. “That was very, very hard. But his reaction made it a little easier. He said: ‘It’s not the end of the world’. He was upbeat and positive. He was like that for me.”
Taking inspiration from one of her own constituents and RTE broadcaster Colm Murray, who is also a patient of Professor Hardiman’s, Nicky as quickly turned her thoughts to research and in a bid to uncover new therapies for the illness.
“The field is moving very fast and we are confident that we will find new and better treatments that will slow down disease progression,” she continued.
That’s further down the line. For the time being, the remarkably optimistic politician is just concentrating on making every day, and every moment count.
“I value everything now,” she pointed out. “Everything....there is life to live yet.”