In New York for fun as well as treatment, the Scottish rugby great sat down to discuss life with machine neurone disease and what hes doing to fight it

In a far-famed situation from Living with Lions, the seminal documentary about the 1997 succes in South Africa, Doddie Weir is told his tour is over.

” Ah well ,” says the large-hearted fasten, his eyes betraying a deeper ache than his sneer as medical doctors flexes his knee, smashed by some Mpumalanga stormtrooper.” We’ve had a good old-time meter of it, eh ?”

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

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

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

Weir Weir in action, for Scotland against Ireland in 1998. Photograph: Allsport

” 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 torso begin to stop functioning through the neurons stopping fuelling, so you eventually can’t walk, you can’t elevate, you can’t swallow, you can’t snack. You can’t breathe, because your diaphragm stops labor. So your whole figure slams 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, sides undermined a little but still cheerfully unyielding. Later, at the New York Athletic Club, he takes control of a donation auction. Reveling in hours of chat and horseplay, he raises $8,000 for his foot with a shirt wear in Scotland’s November loss to New Zealand. He sheds 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 din reproduced when he opens the bottles with their owners.

The room is full of laugh, rekindled by the genial monstrous in the” pattern catastrophe” clothing made use of specially commissioned tartan.

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

The room catches its sigh. When it expels, the phone is somewhere between stun and a sigh.

Rule

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

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

This is Weir’s second stay to New York in the last few months. The Colorado Clinic has an office in the city and can provide masitinib, an inhibitor narcotic, which the NHS cannot. Weir has spoken fiercely on the subject abroad. Here, in the bar, he speaks warmly of health clinics and of Brian Kennedy, the former Sale Sharks owner who is funding his expeditions to the Nation for treatment.

He speaks warmly of others, very, from his fellow” rugby legend” and old-fashioned English adversary Jerry Guscott fixing his collar in the elevator down-” he was the first lady I discovered so I asked him”- to the forces that have dined, cycled, marched or simply talked in support of My Name’ 5 Doddie, the research foundation containing his old shirt number.

” The subsidize 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-time sorority soldier, more than 30,000 picturing Weir walk the pair 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.

Weir Weir- in appropriate tartan- and his sons bring out the pellet at St James’ Park last week, before Newcastle beat Northampton. Photograph: Chris Lishman/ Rex/ Shutterstock

” Our big-hearted climax was a walk in Italy which we supposed maybe 500 or 600 parties 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 manner disaster. The affection and the assistance … it’s amazing.

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

I shake my thought, Englishly.

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

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

” A person cycled 500 miles from Twickenham to Murrayfield in 2 day, to raise money. That was quite a special day … when Scotland beat England, aye. Still no ?”

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

” Drinking a beer ,” he says,” I can’t accommodate it too long. So I drink half of it firstly to become the glass a little lighter.

” A chiropractor I going to see has be good. An pattern of his thinking is, instead of sucking out of a straw because your hands are weak, you’ve got to lift and drink the beer. You use, “were losing”. You’re really telling MND you’re no gonna win .”

Rule

And yet, prohibiting some medical breakthrough perhaps helped by My Name’ 5 Doddie, MND will win. Not long before our convene came the end of the most famous case of all, with the death of Stephen Hawking at 76, 55 years after diagnosis. Weir encounters Hawking as effect- 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 proposes have been brought forward. Last year Weir took his family to New Zealand to watch the Lions. The next intent is the World Cup in Japan next year. Two years after that, the Lions in South Africa again. This week, his eldest elapsed his driving test-” second season, memory”- and another longed-for day was done.

Doddie Weir delivers the competitor projectile for Scotland v New Zealand in Edinburgh in November.

Weir has said he does not relation his MND to the blows and batterings of a top-flight rugby career. But it has taken musicians before. The Auckland and London Irish back Jarrod Cunningham learned he had the disease in 2002 and died 5 years later. The enormous Southern african scrum-half Joost van der Westhuizen was diagnosed in 2011. He died last February. Weir is talking to Van der Westhuizen’s foot” about staging an incident in South africans “.

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 remembers. 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 dry it’ but it doesn’t work, which can be cruel to the person with MND. So my mob are saying,’ We’ll not do that .'”

A A walk in New York. Photograph: Richard Sexton/ Instagram

Weir is not trusting to fortune- as suggested by the journeys to New York for management- but he contends more than formerly he is lucky, citing an instance of beings diagnosed the coming month and dead the next, leaving spouses and young children.

” I wouldn’t say it’s been a wonderful expedition ,” he says.” I probably knew something was wrong for a year or so before my diagnosis. But in a way, yes, I am luck. 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 rejoice than misfortune. And before the five-block walk to dinner through a chilly Manhattan dusk- he ripples away all gives of an Uber- there is time for a theoretical turn.

” I never, ever belief 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 vehicle 15 years ago, a real bad smash. But I ponder Him upstairs took a seem and said to Himself:’ I need a rugby musician, 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 shower floor. So I was thinking maybe the big-hearted guy missed a shepherd.’ Michael Dun, you’re the one, come upstairs .’ So again, I’m not religious but maybe the big son has just said:’ Right, you were lucky with your automobile disintegrate, run sort this MND/ ALS out, discover what you can do .'”

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

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