Charlie Bird: I want a Pride flag on my coffin

Charlie Bird’s distinctive voice, with which he made his living, is now almost completely gone.

The former RTE journalist has motor neurone disease and though he is still physically mobile he communicates with a pen and notebook and a bespoke app created by Marino Software. For this interview he also emailed me some typed answers.

I sit with Charlie, his wife Claire Mould, and their dog Tiger in their garden in Ashford, Co Wicklow. It is a sunny day and their garden is filled with yellow and purple blooms. Across from a table there’s a small stone buddha. There’s a Ukrainian flag. There are wind chimes that can be heard on my Dictaphone later.

Bird and Mould are marking the publication of Climb with Charlie, a book about the charity ascent of Croagh Patrick they organised in aid of both the Irish Motor Neurone Disease Association and Pieta on April 2nd. So far they have raised almost €3.25m. The proceeds of the book will also go to these charities.

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I grew up at the time when so much injustice was around. The Dublin Housing Action Committee, the Vietnam war, the anti-apartheid movement, then Catholic families being burned out of their homes in Belfast, that was the backdrop to my life as a teenager and I was on the streets protesting

Tiger settles beside me. Mould makes coffee and later brings out a plate of coconut creams that must be kept away from Tiger.

Mould calls her husband “Bird” which sounds, when she says it, like an endearment. “I never called him Charlie.”

[ ‘It’s a celebration’: Pride returns to Dublin streets after Covid cancellations ]

Bird asks me stick out my tongue and wiggle it. He opens his mouth to show me that he can barely move his own tongue.

Not being able to speak to his wife is very hard for him. “I have lost much more than just my voice,” he writes. “I can’t talk to Claire. Awful.” He underlines “Awful.”

“We always had banter and chats,” says Mould.

“Always,” says Bird.

In the house he communicates with pen and paper — “It’s more personal,” says Mould — but the voice app, which uses his actual recorded voice, has been indispensable for public events. He uses it now: “Losing my voice has been a dreadful blow to me. It was my life and it was the main tool for my job. We were initially told that I could have a voice bank system, which would give me an English voice, a thought which was very upsetting for me. And then we were told about Marino Software and what this Irish technology company could do for me.”

He could not face it at first, so Mould started the process of “voice banking” without telling him, working away in her office upstairs. “I work in RTÉ as a producer… I went through hours of Bird’s documentaries, news reports, radio and gave them the audio and they were able to produce Bird’s voice and many amazing.”

A social conscience was the spirit that drove him throughout his career

There’s a lot of footage of Bird. He was a young activist before he came to journalism. “I never went to university and I failed every exam I ever did,” he tells me in his typed answers. “But I grew up at the time when so much injustice was around. The Dublin Housing Action Committee, so

people in Dublin without proper housing, the Vietnam war, the anti-apartheid movement, then Catholic families being burned out of their homes in Belfast, that was the backdrop to my life as a teenager and I was on the streets protesting.”

By the time he was working as a journalist he was “political but not with a capital p”.

What does he think his skills were when he started? His eyes widen “None!” he says and Mould laughs. “Ah, come on, you had a great nose for reporting.”

Eventually he writes: “a social conscience”. That was the spirit that drove him throughout his career.

He uses the app again when I ask how he coped with upsetting stories: “I was covering the earthquake in Pakistan many years ago. We were filming in a hospital ward, and I saw this lady in a bed with her feet all smashed up. And I was so taken emotionally, I told the doctor that we would try and help her. Which we did. I helped set up a fund which people in Ireland donated to and eventually she got her artificial legs and she could walk again… I have covered so many famines, earthquakes and the Asian tsunami. They did have an effect on me. The Haiti earthquake. Do you know how many people died? Almost 230,000. All of those people had names and families… Jesus, you’d need to be as hard as stone not [to be] affected by some tragedy like Stardust. I covered many of the funerals and as the years went on, I was not going to forget what happened to those families.”

He is very clear that he is not the only person to experience hardship. He became friendly with the families of the Stardust victims and supportive of their campaign for justice. He also learned a lot from his involvement with marriage equality. He wrote a book, A Day in May, about the stories he heard and this was adapted into a play. He writes: “I knew people in RTÉ who were gay or lesbian going back many, many years and I have put my arm around those people. One person I knew very well died of Aids.”

Every second day I have a bad coughing fit. Sometimes I think I am going to die

When he looks back now, he wishes that “we collectively could have been more supportive [of LGBTQ+ people]. So when I had left RTÉ and was asked by [former presidential adviser] Bride Rosney if I would be the MC of the press conference of the Yes for Marriage Equality campaign, I didn’t hesitate.” He ultimately toured the country chairing meetings and listening to people’s stories. “[It’s] one thing I am very proud of.”

He wants friends from the LGBTQ+ community to speak at his funeral “and place a Pride flag on my coffin”.

How has the diagnosis affected his outlook? “I want to be friends with everyone now,” he says. “In a way I want to bury the hatchet now. Not that I have many to bury… I really do want to show kindness to everyone...I’m not getting upset with the smaller things now in life… To be blunt I’m not going to end up bitter and twisted in whatever time I have in my life now. For whatever time I have left I look on the bright side of things now.”

He also says: “MND is like Russian roulette, you never know what is around the corner, so I am living each day now as if it is my last one.”

He still gets enjoyment from his loved ones, from walks and from his dog. But there are other things he can’t enjoy. Eating is difficult now. He writes in his notebook: “Every second day I have a bad coughing fit. Sometimes I think I am going to die.”

“Tiger stops in his tracks if he hears him coughing,” says Mould.

In the typed answers he elaborates: “Where I’m facing my biggest challenge, and this is not seen by the public, is my swallow. I can’t stick my tongue out now and can’t really chew food anymore. So each time I sit down to eat, and that is three times a day, I am worried about having a coughing fit or choking on some food. There have been a few occasions over the last month when I thought I was going to choke to death. Now, that is no way for anyone to live, but in reality that is how I live my life now. Getting through each meal without choking or coughing is like a victory for me.”

There are other distressing symptoms. “An unusual manifestation of the disease is what is called pseudobulbar affect PBA or pathological crying and laughing,” he says, using the app. “This refers to uncontrollable crying or laughing, which is a distressing symptom.”

Bird doesn’t suffer from the latter but, as he writes in his notebook: “I cry all the time.”

“We could be out walking and someone could say ‘Hello, you’re amazing Charlie’ and he’ll burst into tears,” says Mould.

One guy, he’d literally just finished chemo and he was meant to be resting and he’d climbed the Sugarloaf

They both think it is important that people know about these difficulties. Sometimes stories like his get flattened into straightforward tales of inspiration that ignore how frightening and isolating it all is, although this is understandable because he has been hugely inspirational. Thousands of people were inspired by him to climb at Croagh Patrick and 240 other locations around the world. “I was blown away,” he writes.

We page through the Climb with Charlie book and look at the photos of hundreds of climbers. The Clew Bay Pipe Band played at the top of the mountain. The sun was out. Bird points out his grandchildren and children from Brackloon National School who were waiting for them at the top. “They were dotes,” says Mould.

He learned a lot from how CervicalCheck campaigner Vicky Phelan has dealt publicly with her illness, he says. “And now I have taken so much comfort in getting to know Vicky Phelan. She has helped me enormously to come to terms with what I am facing.”

Lots of the climbers have also been in touch to submit photos for the book and tell their own stories. “One guy, he’d literally just finished chemo and he was meant to be resting and he’d climbed the Sugarloaf,” says Mould. “Someone else said their daughter had died and they were doing it for her.”

Towards the end of our chat, Bird gets me to follow him to the shed where he shows me four plastic containers filled with letters. Many write about their own experiences. Some send him “cures”. People mean well, says Mould, but sometimes the letters are upsetting. Bird writes back to everyone.

In the typed notes, he says: “Many of these people told me they drew comfort from the way I was fighting my battle. Indeed, I got many letters from relatives who someone in their family had died from MND. Some of them were not easy to read, but I took them in the spirit they were meant… When you know you have a terminal illness, in my case that thought lives with me every day.”

It is impossible for Bird to know how much time he has left. He has chosen a final resting place, on the island of Inisheer, a place he has loved for more than 50 years. He didn’t want to leave such things for Mould and his daughters to sort out in their grief. “You have to make difficult decisions, not leave problems behind you.”

I ask Mould if things like that were difficult for her. “Initially,” she says. “But now, no. Not at all... If you want to be buried… Inisheer looking out on the Atlantic, it’s gorgeous.”

As I’m leaving, Bird shows me the beautiful Celtic-style sculpture by Séighean Ó Draoi that sits in their front garden. He gifted another Ó Draoi sculpture to the people of Westport and Murrisk in thanks for their support. The one in his garden features the names of Bird’s daughters and grandchildren and it includes a “cursing stone” on which visitors can make a wish. He invites me to make one. “Cursing stones go back 100 years,” he writes on a piece of paper. Then he adds that Ó Draoi “made my headstone”.

He has a headstone? “He showed it at a meal one day and I was like, ‘Why are you showing this?’,” says Mould and she smiles at him. “But we can laugh now.”

https://www.climbwithcharlie.ie/