"We were always very free-spirited before all this happened," says Claire Bird of life with her husband, Charlie Bird. Donal O'Donoghue hears how the kindness of strangers is helping the veteran journalist with "the living hell" of his motor neurone disease.
"As I'm writing this, I'm bawling crying." It's close to midnight on Saturday night when I open the email from Charlie Bird. Some 48 hours earlier I had sent a list of questions to the journalist and broadcaster who was diagnosed with motor neurone disease (MND) in October 2021.
Since then, everything changed, the shock of the diagnosis giving way to the dogged determination that defined the RTÉ man’s career as an investigative reporter. Charlie Bird was a man on another mission, his mantra 'to extend the hand of friendship’.
Climb with Charlie, a fundraising hike up Croagh Patrick, initiated with his wife Claire, raised over €3.6 million for charity. He also co-wrote (with Ray Burke) an award-winning memoir, Time and Tide, continued to campaign for justice for the Stardust Fire victims and met his musical hero, Bruce Springsteen.
What a magical moment for me and my beautiful wife Claire. Bruce was so kind and a fantastic human. I played my voice app and I really believe we connected. I told Bruce Land of Hope and dreams was on my bucket list, and he said he would play it for me. And God he did. I love him pic.twitter.com/kP9KInCUpX
— Charlie Bird (@charliebird49) May 6, 2023
So much more too. But the disease takes no note of such things: unforgiving and unceasing, it beats on. The 73-year-old tweeted recently that he was at a crossroads as his mobility failed evermore.
We communicate by email. The answers (shaped using voice technology) come in well ahead of deadline, Charlie Bird was ever expedient. "For me what I am facing is a nightmare," he writes. "I now know that MND is going to affect all my limbs and there is nothing I can do about that. I can’t change what is coming for me, but, I mean this while I have a single breath in my body, I am going to continue to help raise awareness for different groups.
"I also said when I got my diagnosis I didn’t want to end up in a wheelchair. But every day when I am out and about, I see people in wheelchairs, and I get guilty and upset at my initial reaction and what I said. There are lots of lovely people out there who have to live their lives in a wheelchair, and I now accept I may be one of them soon. In this life, none of us knows what might be around the corner and I am facing up to the reality of my situation. But I do want to apologise to everyone who is in a wheelchair and to their families as well."
As ever by his side, is his wife Claire. They married in 2016, having first met in RTÉ where they both worked. For so long, life was good and then came October 22, 2021, when, having long suspected something was amiss, Charlie was diagnosed with MND.
"I’ll never forget that day as long as I live," says Claire. "The word ‘terminal’ was the only word I heard and still to this day, I find it hard to get my head around it. Charlie, however, has used his illness to raise funds and awareness for several charities (including the Irish Motor Neurone Disease Association and Pieta House) and is continuing his work. He never gives up on helping others. I am so proud of him. He has taught me, no matter what life throws at you, all you need is determination and perseverance, and you can have a real impact on people’s lives. We could all learn a little from him."
As has Claire. "What I have learned is not to panic but to try and get on top of the situation as best you can. I’m very protective of Charlie and there is nothing I wouldn’t do for him. I have many titles now: carer, PA, the boss, the wife …the list goes on and on."
I was at Bloom today to help raise awareness for Samaritans. It turned into a humbling experience for me. In the space of a couple of hours I had my photo taken with well over a hundred people.
— Charlie Bird (@charliebird49) June 3, 2023
The love, kindness and affection they showed to me just blew me away. I love you all pic.twitter.com/S9UPHrDCyz
As time goes by, the physical and mental challenges get more complex and tougher. "You ask how my mental health is," writes Charlie.
"To be very blunt, it is all over the place and I have many dark days, but I am in a way very lucky that I have amazing support from right across the country. This amazing support is helping me stay alive. Even so, every day I cry. It is one of the side effects of my MND. This is a living hell. I am not the only one with a terminal illness, but what has happened to me over the past two years – and this is mad when I say it – is that some spirit has been guiding me.
"In a way, I have won the lotto, and this spirit and the loving support so many people has helped me so much to face up to what is happening to me. As I am writing this, I am bawling crying. But as I’ve said, I’m not the only person facing the harsh reality of a terminal illness. We must all extend the hand of friendship to people who are in dark places."
In the garden of his home in Avoca, County Wicklow, there is a stone inscribed with the names of Charlie Bird’s two adult daughters (Neasa and Orla, from his first marriage to Mary O’Connor) and his five grandchildren. He once told me how heartbreaking it was to know he would not see the children grow up. Their love, and presence, sustains him every day.
"You ask me what fatherhood has given me," he writes on the day before Father’s Day. "I have two lovely daughters and five lovely grandchildren. So I am in the fortunate position that when I pass, there will be family there to wave me off. I am a fortunate person to receive love and kindness from every quarter and this love is helping me face up to the reality. I am also fortunate that I have a beautiful and caring wife. Another mad thing is our lovely dog, Tiger, who also helps me to get through those dark days."
Charlie Bird has long picked his final resting place, the island of Inis OIrr, which has been his home-from-home for some 50 years. "The first time Bird brought me here I think I threw a runner at his head," says Claire.
"I can’t remember why, but I’m sure he deserved it! I love the island; it is so beautiful, there really is no place like it on this planet. The far side of the island is so stunning, but few tourists really walk this far. We spent many a holiday lazing on the rocks at the far side of the island, hoping to see Hy Brazil. Now we are both going to be buried here and what better place than Inis Oirr as our final resting place? Life is so precious, and we do try to live every moment, but that never really happens.
"It’s about survival and trying to keep both of our heads above water. We were always very free-spirited before all this happened: travelling around the world, always having adventures. Now we live every day as it comes, and yes, some days are better than others."
One only hopes that today is one of those days.
For more information on the Irish Motor Neurone Disease Association and its work, imnda.ie.
Time and Tide by Charlie Bird and Ray Burke is published by HarperCollins.
