What a Difference a Day Makes: ‘A wheel came off his chair — if we didn’t laugh, we’d cry’
Siobhán O'Dea on Sandymount Strand, Dublin. Siobhán's brother Michael Carmody died almost six years ago from Motor Neurone Disease. She and her son, Luke, are doing Ironman Barcelona in October in Michael's memory. Photo: Gareth Chaney
I remember exactly where I was on the M3 when my brother, Michael, told me his diagnosis. It was a Saturday, December 10, 2016.
He’d been in CUH all week, having tests. I’d wanted to go down, but he fobbed me off, said he’d be seeing the doctor on Friday.
I was a manager in a HSE service — we were having our Christmas party on the Friday night so I was staying overnight in Dublin. Michael asked when I’d be driving home to Cavan. I said 7.30am Saturday, he said he’d ring me then.
He rang at 8am. He gave me the diagnosis — motor neurone disease.
I’d genuinely never thought of motor neurone, I thought maybe a muscular issue — he’d fallen off his bike a couple of times, he’d been tripping, had a dropped foot.
In hindsight, I don’t know why I didn’t think of it. It was such an awful shock.
I pulled in the car… I listened, and I gave out to him for not letting me come down to be with him. And Michael being Michael — never wanting to put anyone out — said: “I didn’t want to ruin the Christmas party.”
I wished it was five minutes before I took the call when everything was normal — when he was just ‘in hospital in Cork’. Literally, within a moment, my whole world changed — something had taken the normalcy away.
Michael was amazingly calm, relieved, I think, to have answers to why he was tripping and falling, why he couldn’t keep up with other people on his bike and was falling off; he loved cycling.
I’d looked after patients with motor neurone. I knew what it entailed. I said: “You’re coming to live with me,” and he said: “What? No.”
He was very independent — he wouldn’t want to be dependent on his baby sister, I’m 10 years younger. I said: “Yes, you are.” He didn’t argue.
The fact he didn’t argue… I asked had he suspected. He said yes, he’d already researched it — he always researched anything 150%. I felt really sad: he already knew the severity of this, and I hadn’t even suspected.
I was devastated, distraught, and very fearful of what I knew was a tough journey ahead. If I’d had no knowledge, it might have been easier.
The biggest thing of all, him losing his independence. And the fear of the unknown — everybody has a different journey with motor neurone and I didn’t know what his would be. The fear. Would I be able to be what he needs? Would I be able to support him?
Michael was such a gorgeous human. He just gave to other people. He was the RNLI divisional engineer for Ireland — he was passionate about the RNLI.
He continued working for a few short months. By April, he’d moved to Cavan. That was really tough on him, giving up his life in Cork, giving up his job.
For me, life’s priorities changed — all that mattered was supporting him on his journey. But his whole life changed. In fairness, he took it on the chin, tried to be as positive as he could.
It was hard to see the condition slowly taking over.
Every stage brought its own sadness — when he could no longer use the stairs and had to get a stair-lift, when he couldn’t walk and needed a wheelchair, when his breathing was affected and he needed machine assistance, when he couldn’t feed himself because the muscles in his arm were affected. The disease stripped everything away that was him.
He took the changes, was unbelievable in making the most of it. I’d have said: “Why me?” Michael said, “Why not me?” Days I felt crappy, I would love to have had a day off, I knew I couldn’t give in — he didn’t choose this, he couldn’t take a day off.
We had such laughs, too. Once, in Ennis, a wheel came off the wheelchair — if we hadn’t laughed, we’d have cried. We made good memories. Things he wanted to do — go on a few train journeys around Ireland, go back to West Clare, where we were raised. That was really tough, he knew it was his last time going there.
Ten months before he died, he moved into Breffni Care Centre, Ballyconnell — he needed 24/7 care and I couldn’t give him that. The staff were phenomenal, so kind and caring to him.
Michael died on October 17, 2019. It has taken until now to come to terms with it. Throughout it all, my four children’s support was amazing. My son, Luke, and I are doing Ironman Barcelona in Michael’s memory, to raise funds for Irish Motor Neurone Disease Association.
It’s really tough, the toughest thing I’ve ever trained for — Luke feels it represents how tough Michael’s journey was. A bit like the disease, it’s feeling somewhat insurmountable, but on the day itself, I’ll take it one step at a time — like we took the disease, day by day.
Michael would be thrilled we’re picking a charity so close to his heart. And if by doing it, even one family could get the love and support he got, that would be amazing.
- Siobhán O’Dea and son Luke are doing Ironman Barcelona on October 5 in memory of Siobhán’s brother, Michael Carmody, who died of motor neurone disease in 2019.
- An advanced nurse practitioner, Siobhán has previously run 15 marathons.
- Target fundraising goal: €20,000, in aid of IMNDA.
- Donate at https://www.idonate.ie/fundraiser/SiobhanAndLuke
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