Veteran broadcaster Charlie Bird says he has picked out his grave on the Aran Islands but admits he is struggling with the reality of his life since his Motor Neurone Disease (MND) diagnosis.
Speaking to the RTÉ Guide, Bird says the messages of support he has been getting from the public since he revealed his condition in October have been a huge boost.
“On the dark days, and there are dark days, I cry and I wish I didn’t. I feel embarrassed with people sitting opposite me but I can’t help it,” he says.
“But those messages of support and goodwill lift me, telling me that my life wasn’t all wasted time, that I did something with my life.”
He describes the experience as “hell” and reveals the emotional toll of MND: “I cry every single day.”
Bird, who will be on Friday night's Late Late Show to talk about how he has chosen to face death head-on, says he is “not dealing with it very well” and knows he will miss so many of his family’s milestones.
“On the day they told me the diagnosis, myself and Claire cried all the way home from Beaumont hospital. At the moment I’m not dealing with it very well. I’m struggling. I know it,” he says.
“I will soon be dead. I won’t see my grandkids grow up. I won’t see them getting married. I’m leaving Claire behind and I’m leaving two daughters. This sounds mad, but Tiger, my dog, has got me through the summer. I love that creature, but he will be alive longer than me. So a day will come...it’s hard.”
Bird is building a database of words and phrases in his own voice that he can use when he is unable to speak. He hopes this act will help others with MND and other conditions that affect speech to use a similar technology.
“What I want to do between now and the end is try and help others,” says Bird, who is due to appear on the Late Late Show on Friday.
“[The voice bank] will be my own voice but not a computer one. It’s not just for me but hopefully other people can benefit from this technology and help give them their voice. There were a few sweary ones as well. Like, ‘for fuck’s sake, get off the phone!’’
Bird has made arrangements for his funeral and wants the work he did around the marriage equality referendum to be acknowledged on the day. He has also shared his wishes with his family about his end-of-life care.
“I’ve made an arrangement that on the day of my funeral, someone places a small rainbow flag on my coffin. My last wish is for [Bird’s play] A Day in May to be staged in New York,’ he says.
“I’m hoping that if I get one last roll of the dice, I can die peacefully and at home in this house. I may change my mind too about being fed with a PEG but as of now, I don’t want to do it. I’ve spoken to my family and that is my call. In a way, that is my dying with dignity. If I’m totally incapacitated I don’t want to put a burden on anyone.”
Bird considers the Aran Islands his second home, having spent much time there over the last 50 years, and says he has picked a spot on Inisheer where his ashes will be buried.
“I went there to pick the spot where I will be buried. Now I’ve made that journey and I know where my ashes are going.”
- The Christmas edition of the RTÉ Guide is now available