Making the Most of Life with MND: Marcus Stewart Shares his Story | Football | The Guardian

Former Ipswich and Sunderland striker on dealing with the disease and his emotions as he prepares for fund-raising match

Marcus Stewart hops off his electric scooter and a couple of minutes later, in the corner of a restaurant a few miles outside Bristol, he is talking about how his workout routine has changed. Stewart, whose left foot fired Ipswich into Europe, has lost grip in his left hand since being diagnosed with motor neurone disease last year. “I went on the bike this morning, but only indoors; I was on Zwift. I don’t have to brake, so it’s pretty good,” he says, smiling.

Stewart, who grew up in south Bristol, made his name across town at Rovers before fruitful spells at Huddersfield, Ipswich and Sunderland. He will return to the Memorial Stadium, where he also coached, for a charity match on Saturday to raise funds for the Darby Rimmer Foundation, which was set up after the former Liverpool and Bradford defender Stephen Darby was diagnosed with MND in 2018. So far Stewart and his wife, Louise, family, friends and countless supporters have raised more than £160,000 in the fight against the degenerative condition.

There were a couple of episodes that prompted Stewart to visit his doctor, who arranged nerve tests. There was the time his left hand “went all crampy” when trying to pick up a pint, the day he had to stop doing pull-ups because he kept losing his grip and the moment while relaxing at home that he noticed his left hand and arm looking noticeably skinny.

Stewart saw a chiropractor thinking they would nip any issues in the bud but two or three months down the line nothing changed. “I was thinking maybe it’s a neck problem or a back problem … it [MND] wasn’t even on my radar. But I think it was on my wife’s because she Googles things. She’s Dr Lou,” he says with a smile.

Then came an appointment with a neurologist. Stewart puffs his cheeks as he recounts the afternoon he learned of his diagnosis on 6 January last year. “I called Lou straightaway. She was in tears. I was in tears. I was in a bit of shock.

“I went home and we had a week where it was like: ‘Fuck. How do we go about this now? What do we do? Who do we tell?’ All these sorts of things are going through your mind: writing a will out; selling the car; selling the house because we’ve got a townhouse. How will I get around there in five years’ time?” There were some tough conversations. “Telling my sons … I don’t remember that. Well, I do but I don’t want to. I’m just living in the moment.”

One of the final messages Stewart sent when confirming plans for this interview was that he did not want a big fuss. It is why he is happy his portrait is taken sheltered from passers-by and it goes some way to explaining why the former Premier League striker is reluctant to play in the charity game he has helped organise.

Paul Scholes, Jill Scott and The Outlaws actor Gamba Cole – “he’s a big Gashead” – are among those set to take centre stage. Stewart has no appetite for limelight but recognises the value of raising awareness. “I have to do it,” he says. “I feel I have a duty to help the people that haven’t got a profile like I have. That’s how I feel.”

Darrell Clarke, whom he assisted at Rovers, and Paul Tisdale, his former Exeter manager, will be in the dugouts. Stewart, who turned 50 last year and is a coach at Yeovil, does not want any grand entrance. “I don’t want to be the one that walks on to the pitch with the teams and says: ‘Oh …’ I don’t want to do that. I’ll let them get on with it. I don’t want it to be a day for me. I want it to be a day for the Darby Rimmer Foundation. I just want everybody in the stadium to have a good time. Wear whatever shirt you want, Bristol City, Man Utd, whatever.”

Stewart regularly checks in with the former Cardiff forward Jason Bowen, whom he played against for Rovers, who was diagnosed with MND in February. He has grown friends with Darby and his wife, the Manchester City defender Steph Houghton. Stewart and his wife have attended a couple of Houghton’s City games.

“Stephen is a bit further along the line than I am but he’s still got his sense of humour, and so has Steph. Hopefully one day there is a cure and I’d like to take him for a beer without having to talk or think about what you’re going to eat, what you’re going to drink, how you’re going to get there and all of that stuff. He’s given me some great advice over the last year and a half. He said: ‘Marcus, however it progresses, you just have to adapt as it goes along.’”

Adapt. That word keeps cropping up across an hour of frank and, at times, sobering conversation. His lack of grip in his left hand means doing up zips or buttons can be problematic. So can picking up a cup of tea and pressing the controls on the TV remote. He cannot fully clench his left hand because his index finger protrudes a little.

He explains the difficulty of scooping up, for example, his phone from a flat surface, in this case a coffee table. “I have to usher it up against something and then I can do it. It’s a pain in the ass, don’t get me wrong. But I’ve just got to get on with it.”

Otherwise, he insists, life is pretty normal. “There’s an element of me that feels a bit guilty. I’m seeing so many people who have been diagnosed and are in a bad way six months later: can’t talk, really struggling to walk, stiffening up. I haven’t had any of that, as it stands. But that can be MND for you. You ask yourself questions. ‘Why? Why me? Why am I like this?’ But I have to snap out of it and make the most of it. That’s how I am and that’s how I’m dealing with it.’”

It is not in Stewart’s makeup to wallow. It is why he considers he has a new cast of teammates, with Kevin Sinfield, the England rugby coach who has raised more than £7m for MND charities, his captain, Darby his vice-captain. Louise advised him to steer clear of a programme featuring Rob Burrow, Doddie Weir and Darby.

“I find it uncomfortable watching someone else with MND. I don’t want to be taken to a dark place. If I watch that [programme], I will. Not for long, but I will. I don’t say that out of disrespect for the people that are involved but for my own wellbeing, so I’m not thinking about what I might be like in five, 10, 15, 20 years’ time. Whatever it is. Two years, I don’t know.”

Stewart is hugely grateful to all of his former clubs for their support. The pride in his voice is tangible as he scrolls down his JustGiving page. Scott Murray, his former Bristol City teammate who is now kit man at the club, has signed up to a skydive. Ipswich recently donated £10,000 from proceeds of bespoke Stewart merchandise.

“I try to be emotionless because otherwise I’ll be crying every 10 minutes, you know what I mean? There’s messages of support [on the page] and I just, I just yeah … I say to myself: ‘Don’t read them, don’t read them.’ But I would like to read them all out after the charity do, just so I know … I’ve got to try and be emotionless at some points, otherwise I’d be a wreck.”

Stewart is self-deprecating as talk turns to his membership at a local golf club. “I’ve got to shout fore right because of the club, not because of the ball. ‘Fore! Sorry, I didn’t throw it on purpose …’ Stewart says, breaking into laughter. “I played off seven until a year and a half ago. I’ve slowly gone downhill. The wrist just gives way. I’ve got no strength in the wrist. I’m up to 12, but going up rapidly. Rapidly. You know that tack spray rugby players put on their hands? I was thinking of putting that on my clubs before I go out to give me a bit of extra grip. I’ve just got to adapt.”

He received a deluge of messages, texts and calls within a fortnight of announcing his diagnosis last September. More than 2,000, he thinks. There doubtless would have been thousands more if he were on social media. “I choose not to be,” Stewart says. “I don’t want to get involved in arguments. I just want a simple life: seeing my sons, seeing my wife, watching Netflix, playing golf, going to the pub, having a couple of pints on the weekend, that’s all I want.”