Springbok legend says motor neurone disease has made him a better person
He is sitting in an upstairs room at the University of Edinburgh’s Peffermill Playing Fields, 42 years old and in a wheelchair, 89 caps, 38 tries and one World Cup and none of it matters any more to Joost van der Westhuizen as he talks about the importance of family and what really matters in life. There are two things that we as humans take for granted. One is health and the other is time and the great Springbok scrum-half is not blessed with either.
“There is no time to worry about death,” he says. “There is no time to stress about the pretty things, like money. There is no time.” Diagnosed with motor neurone disease in May 2011, Van der Westhuizen was given a 20 per cent chance of surviving five years while at the same time being told he might not make it to Christmas. But here he is in Scotland, strapped into his wheelchair for fear of falling forwards, speaking with great difficulty, unable to use his arms and admitting that what he has is a death sentence, but smiling all the while and saying that he’s going to fight it. He’ll fight it with everything he’s got.
His body is degenerating, but his mind? Razor sharp. His wit? Never far away. His strength of character? Well, that’s the thing that really knocks you for six. Not the slurred way in which he delivers his words, but the immense power of the words. “I am a better person now. People are surprised when I say that, but during my career I became an arrogant person and now I’m back to the reality of life and what is important. I’m very happy. I can’t wait to get up every morning. I have fun. I have an unbelievable team around me with my J9 Foundation. I have an unbelievable family.
“In the beginning it was very hard for them, but they had a choice – do they get emotional or negative or do they enjoy life with me. We’re not allowed to cry anymore. Life is a choice. Be negative or positive. My boy [he has two young children] when he heard I was coming over here he said ‘When you come back are you going to be better? I want you to play with me’. My kids are awesome. Awesome.”
In his ten years as a Springbok, Van der Westhuizen won pretty much everything there was to win. He played against Scotland five times and won all five, he played at Murrayfield three times and scored four tries. In the room at the playing fields on Friday there were people from his J9 Foundation, there were television crews and club rugby players and a team of film-makers who have followed his life over the last year for a documentary due out in 2014. In the corner, there was Scott Hastings, a friend and a rock of support.
“Here’s a lovely story,” says Hastings. “I played against Joost in 1994 at Murrayfield on the day he scored two tries. Derrick Patterson was our scrum-half. It was Derrick’s debut and he only ever won one more cap after that. I put the word out among the boys that we’re organising a big night for Joost (it was last night at Murrayfield and over 400 people attended) and I’ve invited Derrick up from Hawick. We’re trying to encourage as many people as possible to wear rugby jerseys and so Derrick texted me the other day to say that I’d never guess what he’d just found – Joost’s jersey from 1994. He says, ‘Shall I wear it on the night?’ I says, ‘Aye!’ The two of them hadn’t met in 19 years, not since Joost scored two tries down the blindside and got Derrick dropped from the team. I talk about circles of life and how they bring us back together again. There you have it.”
There was a poignancy in the venue for Van der Westhuizen’s chat yesterday. Edinburgh University boasts research experts on motor neurone disease through their Euan MacDonald Centre, a facility established in 2006 by Donald MacDonald in the name of his son who was diagnosed with MND in 2003. There is no place like this in South Africa and that’s the point of the visit. “People think I’m here for the rugby, but I’m not really,” says Van der Westhuizen. “I’m here to raise awareness of this disease.”
“There is little or no awareness of MND in South Africa,” says David Thorpe, head of the J9 Foundation. “Or, at least, there wasn’t until Joost’s story unfolded. I’ve known him for a few years and they’ve been very humbling years. To see him deal with this head-on and vow to try and set up a research centre at home just like you have here in Edinburgh, that’s inspiring to see. He wants to build a centre. It’s his life’s work now.”
It was six months ago when Hastings got talking to Van der Westhuizen about the possibility of him coming to Scotland and visiting not just the Euan MacDonald Centre, but Euan MacDonald himself. “I know Euan personally because I’m a patron of MND Scotland,” says Hastings. “Euan was diagnosed ten years ago, so he shows that you can live with this disease. Euan was a Watsonian and an Edinburgh University player and himself and Joost have this incredible attitude. He has two young children, more or less the same age as Joost’s kids. These are strong bonds. They want to see their dad get better. Can this be reversed? That’s what the research is about. The more people looking into it, the more chance they have.
“People say it’s a death sentence? Well, Euan has shown he can live with it for ten years. Now, he needs 24-hour care, he’s on a ventilator, he’s got a tracheotomy, but he’s surviving and he lives for every day. This is a new half-back combination and they’re about to meet for the first time.”
The plan is to set up collaboration between Edinburgh and J9 in the hope of realising Van der Westhuizen’s dream of a MND centre in his native land. Raising awareness is part of the project. For seven months, a documentary-maker called Odette Schwegler has filmed Van der Westhuizen’s life. Access all areas. “I was quite surprised that he agreed to do it because I’m not sure he’s had such a great relationship with the press over the years,” she says. And she’s right. When he was a player, Van der Westhuizen wasn’t just brash on the pitch, he was the same off it. Even after he retired, the newspapers were full of his private life, his lurid sex scandal and the subsequent collapse of his marriage. Those wounds are healed, though. His ex-wife and mother of his children is now one of his great supports.
“It’s one of the strongest families I have ever come across,” says Schwegler. “What he was saying about them not being allowed to cry is so true. Never. No crying. Even within the group there is a lot of time spent laughing and joking. He’s not sad. He’s not. I promise you. He’s moved through that. He’s positive and living life with such humour. It’s humbling to go through this journey with him and become friends along the way.
“This started as a documentary project but it’s become much more than that for everyone on the team. Up until three weeks ago we didn’t have funding, we didn’t have a backer, we have been funding this by ourselves for seven months and eventually we said if we don’t get funding, that’s fine, we’ll finish and we’ll take it on the film festival circuit because this film needs to be made because he is greatly loved and adored.
“And I have to say I didn’t like him very much before. I thought he was arrogant and shallow and I’m not somebody that is at all impressed by celebrity and through this process I have completely changed my view.”
Schwegler says that everybody who has seen him since MND cut him down has been moved by his refusal to wallow. She calls it the “pity party”, in that it’s a party he refuses to host. So her film will reflect the struggle of a man who has changed, mentally and physically. The signature music of the film is a song recorded by Van der Westhuizen’s 16-year-old niece, Sumari Botha. Just before he is introduced to the crowd at half-time today, a 90-second edit of the song will be played on the big screens at Murrayfield. A beautiful and heart-rending tribute to her uncle, it’s called Mr Number 9.
For a nation, you will always be a hero
For a family, you will always be a son
A brother, friend and father
In our hearts, you are number one.
Just after 10.30am yesterday, Van der Westhuizen moved on to his next destination. He was wheeled through the doors of the playing fields for his meeting with Euan MacDonald in the centre that offers so much hope and inspiration. One of them with caps and medals and fame and the other who only ever played for fun, but both of them united together in the game of their lives.
THE SCOTSMAN RUGBY SHOW IN ASSOCIATION WITH