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

In a famed incident 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 fastening, his eyes betraying a deeper sorenes than his wince as medical doctors flexes his knee, smashed by some Mpumalanga stormtrooper.” We’ve had a good old-fashioned period 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 body begin to stop functioning through the neurons stopping firing, so you eventually can’t foot, you can’t promote, you can’t immerse, you can’t dine. You can’t breathe, because your diaphragm stops operating. So your whole body closeds 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 diminished a little but still cheerfully steadfast. 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 worn in Scotland’s November loss to New Zealand. He throws in a bottle of special edition whisky- Doddie’s Dram– although he struggles to hold it, then sells two more for $2,000 a pop, a resound recited when he opens the bottles with their owners.

The room is full of laughter, fuelled by the genial monstrous in the” mode catastrophe” suit made 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 made in the gym as hard as he has, I might have longer to live .”

The room catches its breath. When it breath, the chime is somewhere between disturbance and a sigh.

Rule

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

” In Scotland there’s only one drug for it ,” he says.” One dose that came out 22 year 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 negligible chance but at least a better occasion than they have now .”

This is Weir’s second inspect 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 abroad. Here, in the bar, he speaks warmly of the clinic and of Brian Kennedy, the former Sale Sharks owner who is funding his journeys to the State for treatment.

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

” The approval 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 team soldier, more than 30,000 construing 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 dance at St James’ Park last week, before Newcastle beat Northampton. Photograph: Chris Lishman/ Rex/ Shutterstock

” Our large-scale climax was a walk in Italy which we recalled maybe 500 or 600 beings 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 little of a manner cataclysm. The love and the supporting … it’s amazing.

He gives me a sharp appear.” 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 manager, Englishly.

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

The tartan is unforgettable: blue-blooded and white-hot for Scotland, yellowish and pitch-black for Melrose, black and white for Newcastle. Still no, though.

” A person 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, attentions my Guinness enviously, takes a gulp of sea. Weir has always been a glass-half-full sort of chap. Now, it turns out, it’s literal.

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

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

Rule

And hitherto, prohibiting some medical breakthrough perhaps helped by My Name’ 5 Doddie, MND will win. Not long before our gather came the end of the most famous case of all, with the death of Stephen Hawking at 76, 55 years after diagnosis. Weir recognizes Hawking as stimulate- 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 importance. Long-held proposes have been brought forward. Last-place time Weir took his family to New Zealand to watch the Lions. The next target is the World Cup in Japan next year. Two years after that, the Lions in South africans again. This week, his eldest extended his driving test-” second experience, imagination”- and another longed-for day was done.

Doddie Weir delivers the accord pellet for Scotland v New Zealand in Edinburgh in November.

Weir has said he does not connection 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 five years later. The great 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 affair in South africans “.

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

” Joost went through 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 great deal 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 gang 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 tours to New York for medication- but he contends more than once he is lucky, citing cases of beings diagnosed the coming month and dead the next, leaving spouses and young children.

” I wouldn’t say it’s been a wonderful jaunt ,” 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 exuberance than mourning. And before the five-block walk to dinner through a chilly Manhattan dusk- he waves away all volunteers of an Uber- there is time for a philosophical turn.

” I never, ever remember 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 suppose Him upstairs took a appear and said to Himself:’ I need a rugby actor, who am I going to get? Weir? Ah, you’re not good enough so I’ll just let you smash your automobile and you can live.’

” My brother-in-law, he was 54, he was found on the bathroom flooring. So I was thinking perhaps the big guy craved a shepherd.’ Michael Dun, you’re the one, come upstairs .’ So again, I’m not religious but maybe the big-hearted boy has just said:’ Right, you were lucky with your automobile clang, move style this MND/ ALS out, watch 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 charitable focus.

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