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Ipswich legend Marcus Stewart on Motor Neurone Disease: I don't live with it - it lives with me

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Ipswich legend Marcus Stewart explains to Sky Sports about how Motor Neurone Disease has affected his life and how he refuses to let it define him

I wasn't even going to ask Marcus.

Trying to persuade him to give up his time and go out of his way to do a Sky Sports interview about a Premier League season more than 20 years in the past just didn't seem right.

Not when two years ago he received just about the most devastating news you can imagine. He has Motor Neurone Disease.

The cruel, relentless illness that, in recent years, we've seen Rob Burrow, Doddie Weir and far too many others fight so bravely. One that claims more than 2,000 lives in this country every year.

But I was wrong. Completely wrong. Leaving him out would have been the mistake. He'd have seen it on Sky and would have known he was overlooked because he was ill. It was my job to ask, and his decision whether to say yes or no.

He said yes.

And so here he is, walking around the side of the pitch at Bristol Rovers' Memorial Stadium, another of his former clubs and not too far from home, to do the interview.

I should say at this stage - the interview is for a feature being broadcast this Sunday ahead of Ipswich vs Aston Villa.

A piece on the astonishing Ipswich side of 2000/01 who came up via the play-offs and within a whisker of Champions League football.

Marcus, if you don't know, was the team's star striker and finished that season second only to Jimmy Floyd-Hasselbaink in the race for the Premier League Golden Boot.

Stewart played for Ipswich for over two years in both of their most recent Premier League seasons, and was the runner-up in the Premier League Golden Boot race in 2001/02
Image: Stewart played for Ipswich for over two years in both of their most recent Premier League seasons, and was the runner-up in the Premier League Golden Boot race in 2000/01

He was a remarkable striker. And as I'm about to learn, an even more remarkable man.

None of the memorable moments from that season get him too high. Despite scoring 19 times in the league that season, he says he was "never on a roll".

At the same time, he never let the low moments get on top of him.

"I would love to have played for England," he says of the cap for his country that never quite came.

"Every Euros, every World Cup, I always buy an England top and I sing the national anthem as loud as I can. I'm very patriotic.

"So to play for England would have been mint. But it didn't happen, it is what it is."

The last bit is key to understanding his mindset. It is what it is. When the conversation turns to his health, it's this way of thinking that has helped him deal with having his world turned upside down in the last couple of years.

"MND lives with me, I don't live with MND," he says in a voice of absolute defiance. "That's it, my life keeps going.

"I dealt with disappointments quite easily when I played football. Don't know how, don't know why but adversity to me was a fuel, it wasn't a negative, and it's the same with this.

"There's a bit of fire in my belly still and very rarely does the thought of what might happen with MND get into the back of my mind."

We know, of course, how cruel the disease is. Half of people diagnosed with MND die within two years. There is no known cure or effective treatment.

Marcus, though, considers himself "one of the lucky unlucky ones".

Stewart has supported fellow footballer Steven Darby, who was also diagnosed with MND in 2018. In 2023 the pair completed a 178-mile round trip from Anfield to Valley Parade to raise money for the Darby Rimmer MND foundation
Image: Stewart has supported fellow footballer Steven Darby, who was also diagnosed with MND in 2018. In 2023 the pair completed a 178-mile round trip from Anfield to Valley Parade to raise money for the Darby Rimmer MND foundation

Two years after his diagnosis, he still looks like what he is: a man who was an elite athlete not so long ago. "It's my left hand [that's affected] and my right hand is starting to be affected," he explains.

"Imagine when you've been to the gym and your arms feel really heavy. I can just about grip stuff with this hand (his right). This hand (his left) - not at all.

"But I can still get through with things. I can still drive, that's not a problem, I can still walk, I can still pick a cup of tea up just about.

"For me to get dressed in the mornings is quite tough and I've still got both arms to use, some people can't do that.

"I think a lot of people suffer with that. That people have to help them, that they do not have their independence anymore.

"It does whip your independence away. Sometimes within two months, sometimes a bit longer. I'm slow at the moment, my independence is going slowly - but I've still got it."

His determination not to let MND dictate how he lives his life means he continues to work in football - as a first-team coach at Yeovil Town.

It also means he has dedicated himself to raising awareness and trying to fight the disease. Along with his wife Louise and a number of friends and family, Marcus has formed Team Stewart.

Already the fundraising effort of that team stands at almost £375,000 - with much more to come.

A Football Against MND Gala Dinner will take place at Old Trafford in November, with tickets still available. A March of the Day charity walk from Wembley to Portman Road is planned for next March.

He doesn't see his work to help find a cure as particularly remarkable. Equally, he doesn't like to think of himself as someone 'suffering' from MND. He's living his life. It is what it is.

"I don't like the word suffering. I don't think I even like the word fighter," he says, searching for the right words to describe his approach to what has happened to him.

'I'll tell you what I am, I'm defying MND, that's what I'm doing."

You can donate to Team Stewart in their fight against Motor Neurone Disease through JustGiving here.

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