Sam Hayden-Harler won’t be watching the heartbreaking death of Paul Foreman next week, despite millions of Coronation Street viewers tuning in to witness his valiant battle with motor neurone disease.
Sam has assisted by going to the Coronation Street set to meet the actors involved and following the plot with MND personally. However, he acknowledges that witnessing Paul’s last moments will be challenging and that he is not yet prepared to see them.
“I do have to protect myself a little bit,” Sam explains. “Most of the time I have been watching, because it’s very important and I don’t want to shy away from it, but sometimes it’s too painful.
“I know the inevitable is inevitable – every person with MND knows that’s what’s going to happen – and I will watch Paul’s death at some point.That probably won’t be the day that it airs. It may take me some time to prepare myself and I’ll probably want to be alone.
“I know I will sit there bawling my eyes out, but it’s so good that Coronation Street have done this storyline, because it does provoke that awkward conversation. I have never seen as much awareness as there is now about MND and that can only be a good thing for people like me.”
A fit and healthy young man who had run the London Marathon twice, Sam was diagnosed with MND in March 2022 at the age of 35. Initially putting pain and weakness in his wrist and hand down to repetitive strain injury, he eventually went to his doctor and after months of tests was given the devastating news that he had Motor Neurone Disease.
A rare condition affecting the brain and nerves, MND is fatal and usually rapidly- progressing – a third of those diagnosed die within a year and more than half within two years. Rugby legend Rob Burrow, who died of the disease in June after a four-and-a-half year battle, had also visited the Corrie set last year to talk to actors at the centre of the storyline.
He later wrote that he was “so happy to be here with my family. I’m blown away from the response I’ve had, but Coronation Street will have the awareness on a whole new level. On behalf of the MND community, a big difference will be made.” Following his death the soap dedicated a whole episode to Rob’s memory, devoted entirely to a day in the life of Paul Foreman from his perspective.
Two and a half years after his diagnosis, Sam, 37, who with his husband James has a seven-year-old son, is detemined to stay positive and is still working as a loss adjuster with the help of dictation software and a cradle to hold his arm to allow him to use the computer mouse.“My company have said they want to keep me working as long as possible and they regularly check in and ask if there’s anything I need,” Sam says.“I didn’t know if my body would allow me to carry on working, but here I am.”
When Coronation Street heard Sam’s story, they invited him to the cobbles to meet actors Peter Ash, who plays Paul, and Daniel Brocklebank, who plays his husband, vicar Billy Mayhew. Sam recalls: “It was a real pinch-me moment. They were the loveliest men. Dan has messaged me a few times and he said recently: ‘do not worry, even when this storyline ends, we will still keep banging that drum, we’ll still keep talking about MND.’
“That’s so important, because I still don’t talk about it to my husband James. I’ve planned my funeral, but discussing it with someone close is too much. When James does try to speak to me about it, I go: ‘no, not now. I’m quite happy living my life, we’ll talk about that when we get there.’”.
The Coronation Street storyline, which started in April last year, has moved viewers and seen Peter Ash nominated for serial drama performance at this year’s National Television Awards and best actor at the Inside Soap Awards.
Sam is currently able to walk around his home with a stick, but uses a wheelchair when he is out. Carers, who visit once a day, help him shower and dress. “My legs feel wobbly, it’s like being drunk without the drink,” he jokes. “I get upset when I look back at photos, because I was able to hold a cocktail three years ago and now, I can’t even hold a pencil.”
So far Sam hasn’t told their young son the full extent of his illness. “He knows very little, other than that my arms are poorly,” he explains. “But with the Paralympics, we’ve said to him that there are people who are blind who run marathons, there are people with one leg who run races. We’re trying to teach him that anything is possible, despite living with a disability.”
In Coronation Street Paul considered assisted dying and Sam admits it has crossed his mind too. He says: “I’ve never verbalised it. I can see why people take that route, because I do feel a burden – I feel like I’m taking people away from living their lives and I know how frustrated they get, not at me, but the situation. I know they love me. A few times I’ve thought: ‘do I go down the assisted dying route?’ But then immediately I go ‘no, don’t let the b*****d win. You’ve got life, you’re still living, you can still do things, don’t succumb to it.’
“MND takes a lot. It takes your body and eventually your voice. But the one thing it can’t take is the love inside I have for James, our son and my family. I’m not silly, I know what lies ahead and I could really depress myself if I thought about this time next year and what I’m going to be like. But as a family we just take each day as it comes and that makes the future a little bit less scary.”
