Doddie Weir: ‘It’s been a bit of a nightmare, having MND’

In a famous scene from Living with Lions, the seminal documentary about the 1997 victory in South Africa, Doddie Weir is told his tour is over.

“Ah well,” says the big lock, his eyes betraying a deeper pain than his grimace as the doctor flexes his knee, smashed by some Mpumalanga stormtrooper. “We’ve had a good old time of it, eh?”

Twenty-one years later, in the bar of the Fitzpatrick Manhattan Hotel, at Lexington Avenue and East 57th, Weir ruefully smiles again.

“It’s been a bit of a nightmare, having MND.”

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The king of understatement is now 47. Eighteen years have passed since the last of his 61 caps for Scotland. It’s 15 months since he was told he has motor neurone disease, closing on a year since he broke the news to the world.

“I don’t know if you know much about MND,” he says, “or ALS, as I guess it’s called here in America, or Lou Gehrig’s disease. It’s a muscle-wasting disease, so all the muscles in your body begin to stop functioning through the neurons stopping firing, so you eventually can’t walk, you can’t lift, you can’t swallow, you can’t eat. You can’t breathe, because your diaphragm stops working. So your whole body shuts down eventually. It’s terminal, at the moment.”

Life expectancy is usually two to five years. Weir was told he’d be wheelchair-bound in one. But here he is, hands weakened a bit but still cheerfully indomitable. Later, at the New York Athletic Club, he takes control of a charity auction. Reveling in hours of chat and horseplay, he raises $8,000 for his foundation with a shirt worn in Scotland’s November loss to New Zealand. He throws in a bottle of special edition whisky – Doddie’s Dram – though he struggles to hold it, then sells two more for $2,000 a pop, a sound repeated when he opens the bottles with their owners.

The room is full of laughter, stoked by the genial giant in the “fashion disaster” suit made of specially commissioned tartan.

“I’ve been looking over at wee Alex,” Weir says into the mic, gesturing to where Alex Corbisiero, Lions prop turned US TV host, sits in his still-beefy prime. “And I’ve been thinking if I’d worked in the gym as hard as he has, I might have longer to live.”

The room catches its breath. When it exhales, the sound is somewhere between shock and a sigh.

Weir still works his farm in the Borders – he’s sporting a black eye dealt by one of his cows – but he has acquired another cause: survive and find a cure.

“In Scotland there’s only one drug for it,” he says. “One drug that came out 22 years ago. Basically you’ve got a death sentence. So my crusade at the moment is to try to get options for people who have this, so they have a chance. It might be a minimal chance but at least a better chance than they have now.”

This is Weir’s second visit to New York in the last few months. The Colorado Clinic has an office in the city and can provide masitinib, an inhibitor drug, which the NHS cannot. Weir has spoken passionately on the subject elsewhere. Here, in the bar, he speaks warmly of the clinic and of Brian Kennedy, the former Sale Sharks owner who is funding his trips to the States for treatment.

He speaks warmly of others, too, from his fellow “rugby legend” and old English foe Jerry Guscott fixing his collar in the elevator down – “he was the first lady I saw so I asked him” – to the legions that have dined, cycled, walked or just talked in support of My Name’5 Doddie, the research foundation containing his old shirt number.

“The support is just unbelievable. Newcastle have been heavily involved” – last weekend’s game against Northampton at St James’ Park was held in part to help an old club soldier, more than 30,000 seeing Weir walk the match ball out. “We had a Doddie Gump, which was an attempt to follow on from the Ice Bucket Challenge, which Rob Wainwright, my former team-mate, very kindly put together.

“Our big finale was a walk in Italy which we thought maybe 500 or 600 people might do: I think there was 5,000 or 6,000 there. It’s just overwhelming, heartwarming and very difficult to explain. I’m just a Borders boy and a bit of a fashion disaster. The love and the support … it’s amazing.

He gives me a sharp look. “There was somebody who biked up for the Calcutta Cup match – I don’t know if you know but Scotland won that this year, for the first time in 10 years.”

I shake my head, Englishly.

“That was the first time I wore my Doddie’s tartan suit, it came out for that game. No? Don’t remember?”

The tartan is unforgettable: blue and white for Scotland, yellow and black for Melrose, black and white for Newcastle. Still no, though.

“A guy cycled 500 miles from Twickenham to Murrayfield in two days, to raise money. That was quite a special day … when Scotland beat England, aye. Still no?”

He laughs, eyes my Guinness enviously, takes a gulp of water. Weir has always been a glass-half-full sort of chap. Now, it turns out, it’s literal.

“Drinking a pint,” he says, “I can’t hold it too long. So I drink half of it first to make the glass a little bit lighter.

“A chiropractor I go to has been wonderful. An example of his thinking is, instead of sucking out of a straw because your hands are weak, you’ve got to lift and drink the pint. You use, you lose. You’re really telling MND you’re no gonna win.”

And yet, barring some medical breakthrough perhaps helped by My Name’5 Doddie, MND will win. Not long before our meeting came the end of the most famous case of all, with the death of Stephen Hawking at 76, 55 years after diagnosis. Weir sees Hawking as cause – as evidence – for hope.

He and his wife Kathy have three sons, Angus, Hamish and Ben, all in their teens. They accompanied him on to the pitch at Murrayfield in November before that All Blacks epic, then again at St James’ Park this month. He’s determined to see them grow. Nonetheless, life has acquired new urgency. Long-held plans have been brought forward. Last year Weir took his family to New Zealand to watch the Lions. The next aim is the World Cup in Japan next year. Two years after that, the Lions in South Africa again. This week, his eldest passed his driving test – “second time, mind” – and another longed-for day was done.

Weir has said he does not link his MND to the blows and batterings of a top-flight rugby career. But it has taken players before. The Auckland and London Irish back Jarrod Cunningham learned he had the disease in 2002 and died five years later. The great South African scrum-half Joost van der Westhuizen was diagnosed in 2011. He died last February. Weir is talking to Van der Westhuizen’s foundation “about staging an event in South Africa”.

He laughs, thinking back to that day with the Lions in ’97. “Maybe do it in Mpumalanga, yeah … that’d bring back some, well, some memories. I might not say good ...

“Joost went through quite a lot of drugs and one thing or another and quite a lot of testing and I’m not really doing that at the moment. There’s a lot of work been done since Joost was about into what’s working and not working. There’s a lot of bandwagon-ing about ‘this will work’ or ‘this will cure it’ but it doesn’t work, which can be cruel to the person with MND. So my gang are saying, ‘We’ll not do that.’”

Weir is not trusting to fortune – as suggested by the trips to New York for treatment – but he insists more than once he is lucky, citing cases of people diagnosed one month and dead the next, leaving spouses and young children.

“I wouldn’t say it’s been a wonderful journey,” he says. “I probably knew something was wrong for a year or so before my diagnosis. But in a way, yes, I am lucky. They say two to three years is a lifespan with this. And in that time, I’ve never been invited to so many parties.”

His laughter, like mine, is fuelled more by joy than sorrow. And before the five-block walk to dinner through a chilly Manhattan dusk – he waves away all offers of an Uber – there is time for a philosophical turn.

“I never, ever think I want to be someone else,” he says. “I’m not that religious but there are certain things that have happened in my life. I crashed my car 15 years ago, a real bad smash. But I think Him upstairs took a look and said to Himself: ‘I need a rugby player, who am I going to get? Weir? Ah, you’re not good enough so I’ll just let you smash your car and you can live.’

“My brother-in-law, he was 54, he was found on the bathroom floor. So I was thinking maybe the big guy wanted a shepherd. ‘Michael Dun, you’re the one, come upstairs.’ So again, I’m not religious but maybe the big boy has said: ‘Right, you were lucky with your car crash, go sort this MND/ALS out, see what you can do.’” – Guardian service

Doddie Weir’s charitable foundation is myname5doddie.co.uk. He was in New York with Captain’s Knock, a networking group with a charitable focus.