“I’m still here, I’m still fighting,” said Doddie Weir, despite motor neuron disease trapping him in a paralyzed body. Courage and hope define Will, but he is being tested like never before. The former Scot Rock, who won 61 Test matches and played for the Lions on their South African victory trip in 1997, was diagnosed with MND just before Christmas 2016. It has now reached a brutal state of decay.
Will once gave a speech and asked his audience to sit on their hands. Then everyone got a glass of water. Even for a sip, they had to ask someone to put the cup to their mouths. When people finally asked if they could free their hands, Weir refused their permission with a trademark grin.
It’s the simplest insight he can offer on what it’s like to feel when you can’t scratch your nose, eat, wash, or use the toilet without help. Even swallowing and speaking became difficult. This terrible paralysis robs Will of so much, but his wit burns as brightly as ever.
He and his wonderful wife, Kathy, still trade darkly humorous jokes. Weir is also campaigning enthusiastically, with his foundation – My Name’5 Doddie – having raised £8m to fight MND, while urging doctors to step up their research.
But he admits: “It’s much more difficult now. I’ve slowed down a lot. I’m totally dependent on other people to do everything for me.”
His speech is now so affected by the illness that I sometimes have to ask him to repeat himself or Kathy to explain what he just said. But his clarity of thought was not affected. “It’s frustrating not being able to do everything I love,” Will continued. “It’s difficult – it’s even harder when I have to have Casey do everything for me. But I know how lucky I am to have a great family and team.”
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In the kitchen of their farm near Galashiels, an hour’s drive from Edinburgh, he couldn’t turn his head to look out the window. But Doddie could feel the warmth of the Scottish sun on his skin. “I keep thinking about how nice it is today,” he says, “to be able to enjoy the beautiful weather, a luxury that many people with MND don’t have.”
Nights were different when he lay in the dark unable to move. “I couldn’t even turn over in bed. It was like an alarm clock was going off on my toes and I had to tell Kathy to turn me over every two hours.”
They were together on that horrible Friday afternoon, December 23, 2016, when a specialist made a devastating diagnosis that Dodi had MND and predicted that he would not be able to walk within a year. The former player, who retired in 2004, defied such predictions for more than four years when he displayed a galloping determination that made the great commentator Bill McLaren call him on his first stint with the Scottish Giraffes. He described it as “crazy”.
Dodi Googled his symptoms and warned Casey he might have motor neuron disease. “It’s because of my rugby. I always prepare for the worst before every game. So I’m not shocked.”
Casey shook her head. “When Doddie first mentioned that he might have MND, I was like, ‘Absolutely not.’ So it was a big shock and I went through a period of shock and sadness. I’m not complaining because we Lucky and doing the best we can. We packed a lot.”