‘Do what you can today and only then worry about tomorrow’
Doddie Weiris living with MND but remains defiant in the face of an uncertain future, writes David Kelly
WHAT about ye big man?” The familiar Borders burr booms, bearlike.
You laugh at the sight of Bill McClaren’s “mad giraffe” calling anyone else a “big man”. And then you stop laughing because you wonder why he is laughing.
How are you, Doddie? “Still smiling my friend, still smiling, so crack on!” It is tea-time in his Galashiels house, wife Claire is pottering, preparing for dinner, the boys assembling plates and cutlery.
An ordinary family scene, perhaps, but none of them can possibly know how many are left.
Doddie Weir is 47. A onetime Lion. Capped 61 times for Scotland. Aged 47. And he suffers from Motor Neurone Disease (MND). A death sentence. No known cure.
Many of us here are intimate with its cruel, wanton waste; we have lost dear colleagues: Paul Magee, Colm Murray, Paul Darbyshire,
So you know how every moment is precious and this feels like an interruption.
“No never,” he defiantly thunders. “If people are good enough to phone and say hello and would like to speak, I’m good enough to respond, especially the Irish. You are good friends of mine. And the Celtic Nations support each other through thick and thin.”
Since his diagnosis, millions have been raised for his MND foundation and thousands have joined his cause as he desperately quests the one remedy that might defeat that acrid acronym.
Weir reckons if all this work can’t help him, it may help others. Remarkably, he counts himself lucky to be able to do so much work even if he may not live to bear any of its fruits. One who helped was Conor Murray, Ireland’s scrum-half, who donated the unique Munster jersey worn the week after the death of Anthony Foley; an old sparring partner, impossibly thieved before his time.
“Life’s pretty cruel sometimes and that was a cruel moment to happen to a great guy,” he says. “You can see the support from the rugby public, I have found that myself. In a way, I have been able to see it and that’s the sad part, sometimes you don’t get the chance to see it. Axel’s death was very sad.
“The lesson is to enjoy yourself while you can. You don’t know what’s around the corner. I’m very lucky even if I have a horrific issue. I’m still here and enjoy myself with my family and friends, have all these dinners and speak with people. It’s not a great time. I’d rather not have what I have. But on you go.”
He was diagnosed 14 months ago. Statistics show half of his ilk would be dead by now. At Christmas, he received an email from a man whose brother had died within weeks of diagnosis. He was 38.
“Two kids. He told me to keep up the good work so that puts things in perspective. Compared to that, I’m absolutely fantastic. I’m still able to walk, talk, eat, sleep, drive a car, work, drink, socialise. People shake my hands, wish me good luck and press money into my hands.”
And yet he can already feel some of the signs. Those giant, farmer’s hands, for one, that the former lock once used to scoop so many balls from the air in the Scottish lineout, are starting to tingle. At times, he literally can’t hold his drink; he won’t make it to Dublin, this weekend, and smiles when you suggest maybe this is not the worst idea...
“Maybe not! Although the good lady wife likes a beer too! Holding on to drinks is a problem, the thumbs to first fingers. It’s not a major issue.
“But it’s a constant reminder. We’re proactive, we have an idea what’s coming down the line. We’d prefer not be there and that’s why we’re doing the campaigning.
“It could happen in six months, that’s the dream! At least we’ve started something. I’m following Joost van der Westhuizen’s work.”
The South African World Cup winner who also succumbed a year ago, aged 45.
OBSTACLES
“Unfortunately, not a lot worked for him,” says Weir, whose battle in life to prevent death is riddled with insurmountable obstacles.
“That’s the frustration. The after-care is fantastic but the pre-care, in trying to get a slowdown or a stoppage is just not there. Twenty-two years ago, the one and only drug became available but nothing has been done since and no clinical plans have been advanced. It’s an horrific thing that happens to you eventually. It’s not fun.
“And for nothing to be done with such a horrendous outlook is all wrong. We have some ideas to try to make a bigger noise.
“That’s all we can do, get people to talk about it and with any luck the people who can do something about it will and we can support them in some way. We’ve a global review of MND and the outcome hopefully will be that a professor somewhere will think we can get a fix to slow this thing down and then we can help them. At the moment it is not as joined-up as it should be. In the next six weeks or so, we will have some answers.
“We went to the US and there is a lot of positivity there but not so much in this part of the world.”
In the past, many cancers presented a similar, shoulder-shrugging acceptance of grim fate.
“Spot on, instead of thinking we can get things sorted. There’s a drug in France I want to give a go but the local authorities wouldn’t give it a go. My professor and doctor were willing to oversee the safety of it but they said no, no you can’t do it.
“They’ll review it in October. Well, that’s a number of months down the line. And that’s time we don’t have!”
Every second counts and Weir intends to make the most of his and, he hopes, for those who follow him.
“My experience of rugby helps. If you don’t succeed, you try that little harder to find a way to succeed. They have denied this and I’m lucky now I can get some inroads to find other medical experts who can help, maybe politicians. If you can’t succeed one way, maybe you find another.
“The support I get helps me to get up in the morning. I turn up and all these other people come up with ideas and put on great dinners.”
You suggest it might remove the harsh reality of what he faces.
“Probably not. It probably has the opposite effect. Every day is an MND day. You can’t get away from it. In a way, that’s life.
“I still work for Hutchinson Environmental Solutions, a septic tank company. So Monday to Friday, that allows me a little escape for three or fours a day.
“I bury myself in s**te – it brings me down to earth! Literally! I was at the Sports Personality of the Year, meeting heroes like Kenny Dalglish and Michael Johnson and then two days later I’m looking at someone’s blocked septic tank. That’s the beauty of where I live.
“If you don’t use it, you lose it. I’m a farmer, I still lift the odd bag but it takes longer now. It’s a muscle-wasting disease so you’re trying to keep the muscle on, go to the gym. It has done me no harm but I know others may not have that opportunity or luxury.”
You can’t help think of that Shawshank sermon as Doddie doggedly focuses on the business of the now – get busy livin’ or get busy dyin’.
Does the constant fundraising efforts help his family deal with it?
“It does because I’m never here! I’m lucky because there are no major issues right now. Looking to the longer-term, it may get trickier for the family. You do think about the longer term because you want to look after your family and protect them, it’s a traditional thing.
“The kids are teenagers now, they have driving and exams and girlfriends and university to get through. It drives you on a little bit to the next thing.”
He doesn’t know what next means. Next week? Next month? Next year? Stephen Hawking has lived for 50 years. Why not Doddie Weir?
“Listen, I didn’t think I could do the next Six Nations last year but here I am. And I didn’t think I could go on the next Lions tour last year but I did. Four big loons (brother Thomas, the two eldest boys, Angus and Hamish) and the good lady.
“I’m still here. You just get on and do it!”
As he slowly recognises the decreasing power of the body, he knows he must try to keep control of his mind.
“I’m okay there,” he affirms. “It seems to be okay because I’m not that bad at the moment with the MND.
“When the ailments become more significant, we may have a different story. Fourteen months since diagnosis is fortunate when you hear the other stories.
“Sometimes I have difficulty with the buttons and the good lady or the kids have to help with that.”
The only time he escaped MND was the day he flew to New Zealand last summer with the family. No calls, no texts. He wanted to let go.
“If you get a chance to do something you haven’t done before, try it. They’ll say no but I’ll say why? And they’ll say because they don’t like it. And I’ll say how do you know?”
And so when he arrived in Auckland, he got the boys to go bungee jumping. Doddie had done it before, they hadn’t and didn’t want to. Doddie went ahead and booked it anyway.
“I’d say two of them might never do it again but they have done it and they have the experience. That’s my lifelong lesson to them.”
An ordinary family letting go in all senses of the word. A powerful message.
“Have no regrets. It’s just an overwhelming thank you. If anything, do what you can today and worry about tomorrow when it comes. And if it doesn’t come, you’ve had a good last day.”
He was one of the few who predicted a Scottish win against England and hopes for a repeat – “by two points” – today. His battle will continue but he remains defiant.
“Never have a bad party!” A design for life, especially when your hold on it is so tenuous.
Please visit the My Name’5 Doddie Foundation website at https://www.myname5doddie.co.uk
THE LESSON IS TO ENJOY YOURSELF WHILE YOU CAN. YOU DON’T KNOW WHAT’S AROUND THE CORNER. I’M STILL HERE AND ENJOY MYSELF