Doddie Weir: Living with MND, the crusade for a cure and the global rugby family

YOU CAN SEE Doddie Weir before you can hear him. You can feel his presence in the room before he graces you with it. A strapping six-foot six-inch second row in his day, he towers above most. And then there is his specially commissioned tartan suit. Navy for Scotland, black for the Newcastle Falcons, yellow for Melrose RFC. A genial giant, a larger than life character, enjoying every day for what it is and as it comes.  

Nearly two decades have passed since he won the last of his 61 Scotland caps, and a little under two years since he was diagnosed with the incurable and terminal Motor Neurone Disease. 

Shane Byrne and Doddie Weir in Dublin yesterday. Source: Ramsey Cardy/SPORTSFILE

Circumstances have brought him to Dublin, and specifically Leinster’s high-performance headquarters on UCD’s Belfield campus. It’s Monday afternoon before the province’s biggest game of the season, yet all of that seems trivial — immaterial — when Weir walks into the room and sits in front of a dozen assembled journalists.

Weir has just bumped into his good friend, and former team-mate, Stuart Lancaster downstairs, the pair having played together with the Scottish students and U21 team together way back when. Lancaster qualified through his Scottish mother.

There is just one year in age between them, but they now live very different lives.

While Lancaster remains in impressive physical condition, almost as if he could still do a job for Leinster if called upon at the weekend, the future is very different for 48-year-old Weir, who considers himself fortunate to still be here as his condition continues to deteriorate, his nerves, muscles and brain under constant attack by the most horrific and devastating disease.

“I am fortunate in a way that, two years in, I am still here,” he says.

The subject of conversation in this room is usually reserved for players going through the motions with media, blurting out cliched answers on processes, taking each game as it comes and the learnings from the last game.

So to sit here and listen to Weir explain the symptoms of Motor Neurone Disease and how, stage-by-stage, he will lose the ability to perform the most basic daily tasks — such as walking, going to the toilet and eating — is comparatively distressing.

“It’s a muscle-wasting disease,” he explains, the room now deathly silent. “Once it gets to your legs, you can’t walk, once it gets to your arms, you can’t clothe yourself. You can’t lift, you can’t go to the toilet.

“It also gets to your swallowing so you can’t swallow, you can’t eat, you can’t breathe, you can’t speak, so the whole of your body shuts down and eventually all you can do is communicate with your eyes.”

His positivity, however, is inspiring. He smiles and jokes, and the room is never far away from a bout of laughter despite everything.

“Why am I quite positive? Well we get emails to the foundation and I got one a wee while ago saying that this gentleman from Yorkshire, it was from his brother-in-law.

“It said ‘Big man, keep up the good work up because my brother-in-law was diagnosed in September 2017 with the disease and died in December 2017. He was 38 years of age and had two kids, two and five.’

Weir in action against Ireland back in 1998. Source: Patrick Bolger/INPHO

“So when you hear about that, I’m 10 years further on, my kids [three sons, Angus, Hamish and Ben] are 10 years further on and what have you got to grumble about?

“When you look at what’s happening in the world and you can see that someone else is a lot worse than you, you feel so much better, and that’s a similar issue, there’s a lot of people worse off than me so don’t grumble, get on with it.”

Told he’d be wheelchair-bound after a year, his world having just been turned upside down, Weir’s outlook has changed irrevocably, but so too has his motivation and purpose in life.

With the help of the global rugby family, his former team-mates and opponents, and family and friends, Weir wasted no time in setting up the ‘My Name’5 Doddie Foundation’, to raise funds to aid research into causes for Motor Neurone Disease and investigate potential cures.

Already, the charitable foundation has raised more than £1 million through various campaigns, the generosity of the rugby and sporting communities and fundraising events, which also includes next month’s annual Ireland versus England Legends match at the RDS, organised by Shane Byrne and Rugby Players Ireland.

“MND is quite a complex issue,” Weir continues. “It’s not an easy fix but the annoying thing for myself, and why we went ahead with the foundation, is that there is nothing new on the table in the last 25 years and that is outrageous.

“Do they have any effect on MND? So that has come on a little bit but, for myself, the frustration is that it is not coming on quick enough. That’s what we want to try and propel.

“There is nothing for people who have MD and I think it’s ridiculous that after 25 years, there is not one extra tablet or anything. You have to go and self cure as well which means you’ve got to try and find your solution because the professors will try water, try Guinness, try exercise, try sunshine, try anything like that. There’s none of that. Every single person has to try and find their own way.”

Unfortunately, for all the positivity in Weir’s life now, there will be no happy ending to this story. MND will win, until there is some form of medical breakthrough. Weir knows that, but is determined to help others down the line.

At the World Rugby Awards in Monaco in December, he was awarded the Award for Character in recognition of his campaign to find a cure for Motor Neurone Disease, and in November was accompanied onto the pitch with his family ahead of Scotland’s Autumn Test against the All Blacks at Murrayfield. They are all special moments at such a devastating time.

Presenting the match ball to Beauden Barrett in November. Source: Billy Stickland/INPHO

“The rugby network, it’s such a lovely network of family that when there is an issue, whether it’s MND, whether it is cancer they support you,” he smiles.

“There’s just such an amazing body and spirit that a generation all come together to help you, in any way that they can. 

“It has just been staggering and very difficult to explain in that I don’t feel that I have done any different to anyone else [to warrant the support].

“But with that truly amazing help it gives me a reason to get up in the morning.”

In Dublin to help launch the fundraising game on Friday 1 February, Weir is heading off for a special lunch alongside former Ireland hooker Byrne, Scott Hastings and various other past players to catch up, regale stories from years, tours and matches gone by and, most importantly, spend time in each other’s company. He continues to make memories, his good humour undiminished.

Lancaster, taking time out of the preparations for Leinster’s clash with Toulouse, had nothing but good words to say about Weir. The pair shared a dressing room together many times during the early stages of their respective careers. 

“He looked remarkable and his spirit was remarkable given the prognosis he’s got,” the Englishman says. “For him personally, there is nothing but admiration for what he’s done and how he’s dealt with such devastating news.

“He is dealing with it in such a positive way and making a marked difference in society. It’s made him now, which I think is a really important step for him to do in his position with that condition. He’s shone a light on it.” And more.

Weir’s frustration is that there is no cure, or indeed no progress in the crusade for a cure, and that is noticeable throughout our 25-minute conversation, but the fight goes on. He feels it is his duty to raise awareness. 

“With any luck now, with the foundation and what the support and generosity of people, we all know a little bit more about it. This is all because there is nothing out there now.”

It was back in November 2015 when the former British and Irish Lion first noted a problem with his left hand, and after Googling his symptoms — ‘Oh we’re in a bit of trouble here’ — the process to get officially diagnosed through a series of tests began. 

Stuart Lancaster and Weir at UCD on Monday. Source: Ramsey Cardy/SPORTSFILE

He says there is no link between his condition and the physical punishment his body sustained during a long and distinguished international rugby career, but he’s not the first rugby player to be diagnosed with Motor Neurone Disease — former Springbok Joost van der Westhuizen passed away last year at the age of 45.

The reality, sadly, is that the condition will eventually get the better of him too, but Weir’s positivity, upbeat personality and determination to make something good of the cruellest twist of fate will not be weakened. The smile remains.

“Well I don’t really think about it too much, the future,” he adds.

“The future that I am looking for is a solution and with the support that we have got, we are challenging the professors which I don’t really think they are used to because I have got nothing to lose.

“I’m positive, I’m still here. I got to celebrate another Christmas with the kids and I’m enjoying every day for what it is. That’s been a recipe I’ve gone with from day one, 20-30 years ago. Every opportunity we’ve had, enjoy the day for what it is, and worry about tomorrow when it comes.

“If it doesn’t come, you’ve had a good last night.”

Doddie Weir was speaking in Dublin ahead of the Ireland v England Rugby Legends match taking place in the RDS on Friday 1 February.

All proceeds from this great event will be split among the My Name’5 Doddie Foundation, Rugby Players Ireland Foundation, Restart Rugby, the IRFU Charitable Trust and Irish motor neurone charities. For tickets search #RugbyLegends or visit Ticketmaster.

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