It’s hard to look too far ahead now... but I’m lucky
Doddie Weir shocked rugby when he revealed he has Motor Neurone Disease... but no sympathy, please!
‘JUST make sure you’re not nice about me,’ says Doddie Weir, as we stand to say goodbye after a chat, ostensibly about his mortality.
His mood has mostly been as bright as his trademark tartan suit. But now there is a tear in his eye, as well as a sparkle, as he offers a hand the size of a frying pan to shake before he goes.
The grip is still fine, if weaker than it once was. ‘People being nice is what gets me the most,’ he adds.
In June this year, just short of his 47th birthday, the 6ft 6in former Newcastle, Scotland and Lions lock revealed he had motor neurone disease. MND is a rapidly progressing terminal illness. It causes wasting and later paralysis, and thus difficulty with speech, swallowing and ultimately breathing.
On a drizzly Friday afternoon in Glasgow, in Weir’s first newspaper interview since announcing his condition, he explains how he first noticed symptoms in November 2015. ‘I caught my hand on the door at home and I thought I’d broken my arm,’ he says. ‘I thought “Ach it’ll be fine on Monday” but with that I lost a bit of strength.
‘ Two or three months later I thought things were starting to get better, but my skin started to twitch. Again, I just thought it would be OK, but after some intermittent twitching I went to the doctor in about July or August [2016] to start the [diagnostic] process.’
Weir had a brain scan when his hand weakness and itching persisted. He did a second MRI, which was inconclusive. Blood tests then came up clear. Screening dyes in his circulatory system proved nothing, nor did ‘shock testing’ with acupuncture equipment.
Next up was a lumbar puncture, also known as a spinal tap, where a thick needle was inserted into his spine to collect cerebrospinal fluid. ‘That was pretty sore … it took a bit of doing,’ says the towering Weir, who won 61 Scotland caps.
On and on went the tests, until the day in December when a consultant dropped the bombshell. As Weir puts it: ‘It got announced to my good lady Kathy and I that this is what we were facing.’
He pauses, as he does several times whenever talking about wife Kathy and sons Hamish, 16, Angus,
15 and Ben, 13. ‘We were a bit coy about it for a long time. I had a look on the internet and they say that’s the worst thing you can do because immediately I thought, “Right, you’re in a bit of trouble”.’
Weir’s situation was further complicated by two things. Firstly his mother Nanny was seriously ill with cancer. He didn’t want to tell her, before what the family believed might be her last Christmas, that he too was terminally ill.
Secondly, as a much- admired sportsman, he knew making his condition public would bring attendant pressure, not least on son Hamish, due to take his important Highers exams in summer 2017. Hence initially he and Kathy did not tell anyone, even their boys.
As it transpired, Weir’s mum missed Christmas, hospitalised, although she has rallied since. And Doddie and Kathy gave their sons the news in January.
‘The boys have been absolutely cool about it,’ he says. ‘The oldest one has a bit of an understanding of it, but the other two haven’t said much. We don’t shy away from what I have.’
Weir had long promised his sons he would take them on an extended holiday to watch a Lions tour. Prediagnosis he had his eye on the 2021 Tour to South Africa, the country where he made his own Lions debut, in 1997, when he suffered a horrific knee injury while on duty. ‘But that may not be possible,’ he says. Instead, the family spent six weeks this summer following the Lions in New Zealand. News of his illness was deliberately released as they took off, so he could spend a day in the air away from calls and texts.
‘But people in New Zealand were wonderful,’ he says. ‘For a numpty from the Borders to get so much support is quite overwhelming.’
And so to what Weir hopes to achieve with whatever time he has left — raising awareness and hope- f ull y f unds t hat will nurture research i nto a condition that afflicts just two people per 100,000 in the UK, or a relatively small figure of about 5,000 people at any one time. He says the most common medication — arguably the only one — for MND is a medicine called Riluzole, which is now 22 years old. It is not a cure, or a significant life extender, but it can help sustain quality of life for some patients.
‘That’s annoyed me a little bit,’ he says. ‘There are only 450 people in Scotland who have MND and drug companies don’t want t o get involved because it’s not financially viable.’ One major fund- raising event on the horizon is being organised by long-term friends including former Scotland teammate Kenny Logan. Billed as a ‘Night of Laughter’ and to be hosted in Battersea, London, by Logan’s wife Gabby on November 6. It promises to be a celebration of Weir’s life as well as a way to collect donations. ‘ The rugby world, the rugby public have been overwhelmingly supportive,’ Weir says. ‘ Kenny Logan especially. Him and his good lady are organising this massive dinner at Battersea. He was first on the phone and it was quite a difficult conversation. We’ve had a lot of times together, and ultimately my goal is for that to continue.
‘I’m still here. If I was to go back on my life, I’ve had one of the best ones. No regrets. I was in a national team age 18, 19, travelled the world for 14 years, met a lot of lovely people in the amateur days which were totally different. All at someone else’s expense, which is always good.
‘Not being able to look too far ahead now — that’s the sad part. But I wake up in the morning and think, right let’s get on … I’m lucky. It’s been nine months, heading for a year [since diagnosis] and I can still speak, drive and eat.’
He describes some of his calls with these friends, not least Scotland allies Carl Hogg — now head coach at Worcester — and Logan, as ‘difficult’, at least when he told them the news. ‘I was getting emotional,’ he says.
Now, as long as he can, he will continue work on his farm, if only to keep active. ‘If you don’t use it, you lose it,’ he says. ‘Keep on going. Do what you can do today and worry about tomorrow when it comes. That’s my sentiment since I was 19.’
For information about Doddie Weir’s fundraiser for Motor Neurone Disease research, visit www.fireballshop.co.uk/event/doddieweir-testimonial.