In 2013, Rugby World editor Owain Jones, sat down with Joost van der Westhuizen and talked to him about his life in rugby and his battle with Motor Neurone disease…

In early 2011 the rugby world received news that was to stop it in its tracks. Joost van der Westhuizen, South African idol and one the greatest rugby players ever to grace the field, disclosed that he had a particularly aggressive form of motor neurone disease (MND), amyotrophic lateral sclerosis (ALS). The prognosis was grave. Sufferers with his condition are generally given between two and five years to live. Even for a fierce competitor renowned for not giving an inch in ten years at the game’s pinnacle, the news left the Pretoria-born scrum-half shell-shocked.

Only months before, friends had thought he had gone a little overboard on the Castle lager when he started slurring his speech. But when he felt a loss of power challenging his friends to a playful arm wrestle, he decided action needed to be taken. After that fateful visit to the doctor, his world caved in.

Nearly two years on, Rugby World caught up with van der Westhuizen in London as he visited the capital to raise funds for his charity at a star-studded dinner attended by the likes of Patrick Vieira, Shane Warne and Liz Hurley.
To first see the man, so revered by the rugby public for his strength, skill and indomitable will to succeed, shuffling across the hotel lobby on a bitterly cold morning is humbling. Still tanned, having just flown in from Dubai, and wearing a thick navy blue overcoat, the 89-cap Springbok moved slowly, muscles having been weakened by ALS, but he made it across the 30-metre atrium unaided, before collapsing into a chair with an audible thump.

Classic pose: Joost van der Westhuizen was rightly regarded as one of the greats

After only a few minutes in his company, however, any preconceptions of pity quickly dissipated. While the body is shutting down, the mind is alert and he is tackling ALS in much the same way as he faced opponents – with sheer bloody-mindedness and courage.

So what does he remember of that day he was diagnosed? Van der Westhuizen, his words slurred, responds slowly but purposefully. “When the doctors told me I had MND, I’d never heard of it and did some research. I couldn’t believe it,” he says. “To be honest, it was an emotional roller-coaster and it took me about a year to fully come to terms with my condition.”

Van der Westhuizen explains that once the anger and despair subsided, an acceptance began to emerge. “After a time, I came to the conclusion that life is not about the amount of years left but the amount of memories created. I’m determined not to spend the rest of my days in tears talking about my loss because it will make those close to me miserable. Likewise, if my friends and family are emotional all the time, it will just upset me.”

Having young children whom he clearly adores – son Jordan, nine, and daughter Kylie, seven – made the news particularly heart-wrenching and he had to have a frank chat with his family, including heartbroken parents Mariaan and Gustav. “I sat them down and told them straight. ‘We don’t know what’s going to happen, let’s make memories while we can’, so we’re all having a lot of fun and I’m trying to spend as much time as I can with my kids. I can’t worry about the events I’m going to miss, like walking my daughter down the aisle or watching my son in sports day at school. I can only worry about the here and now.”

Back with the boys: Joost celebrates the anniversary of the winning of the 1995 World Cup

One project that has given him a raison d’être is his J9 Foundation, which helps other MND sufferers enjoy a better quality of life. “The foundation gives me a reason to get up in the morning. We focus on improving the emotional and financial welfare of MND sufferers through fund-raising. It’s only when you’ve been through it that you understand what the families are going through.

Why do I do it? Simple – because it gives me pleasure.”

As one of South Africa’s best-known sportsmen, van der Westhuizen has been genuinely moved by the backing given
by the rugby community, from the SARFU and his old Super Rugby team, the Blue Bulls, to individual players, led by the 1995 World Cup-winning team. “I’m still close to Francois (Pienaar) and the boys because of what we experienced, but to hear players like John Smit offering his support is very touching.”

However, it’s the support shown outside the Rainbow Nation that has left him most overwhelmed. “It makes you realise what a big rugby family we are. My old sparring partners George Gregan, Justin Marshall and Agustín Pichot
all asked if they could help and are now worldwide ambassadors for the J9 Foundation.”

Titanic tussle: Joost was rated as one of the best No 9s of all time

Since retiring after the 2003 World Cup as the most-capped Springbok and top try-scorer, van der Westhuizen was living a gilded life, playing golf, attending dinners and building a successful broadcasting career, but his reputation took a hit in his homeland in 2009 when he was forced to admit, after an initial denial, that he had been caught on video in flagrante with another woman while his wife, South African TV personality Amor Vittone, was pregnant with their second child.

Such a fall from grace hurt and the stress of the affair was blamed for him collapsing at a corporate event during the 2009 Lions series. After a chastening public mea culpa, he was slowly starting to rebuild his shattered personal life when MND was diagnosed. “Through my own experiences, I now accept you have to man up for your mistakes. When the going gets tough, you build character and when you’re riding high, you use it. You make the decisions in your life, so either deal with it or die. I’ve tackled life head on but I always say if you live in the past, it will ruin your future.”

Known as a ruthless competitor and often perceived as arrogant, van der Westhuizen admits that MND has softened his character. “When you’re terminally ill, you see life in a different way. When you’re fit, you take time and your health for granted. It’s only when you lose it that you realise what you had. The disease has definitely changed me and, you know what, it’s made me a better person.”

In focus: Van der Westhuizen had a life under media scrutiny

As the interview drifts inevitably towards rugby, a broad smile comes to van der Westhuizen’s face. So does he still take a keen interest? “Hell yeah, rugby will always be a big part of my life.”

So what does he think of the current crop of Springboks? “I played under Heyneke Meyer as a coach and I know he is building something very special with SA rugby. In a year or two that side is going to be phenomenal and ready for a serious shot at the World Cup in 2015, mark my words.”

England Rugby 2015 will mark the 20th anniversary of van der Westhuizen’s own nirvana, winning the World Cup in 1995. “In those days we were still amateurs and we just loved the game, so to be part of an event that changed our country made it unforgettable. It was comforting to know that through rugby we changed lives.”

For those not au fait with the events at Ellis Park on 24 June 1995, South Africa – watched by Nelson Mandela – defeated a Jonah Lomu-inspired All Blacks 15-12 in the final to set off wild celebrations around the country. Van der Westhuizen was credited with a series of earth-shuddering tackles on the tournament’s bullocking superstar. “Jonah was a real handful back then but we’re now mates and he is a great guy, very down-to-earth. I have a lot of time for him.”

Proud Bok: Joost signs autographs for fans at the 2003 Rugby World Cup

Van der Westhuizen had famously broken two ribs in the semi-final against France but decided to play through the pain barrier against New Zealand. Even now, he brushes off the injury. “I did what I had to do on the day. We were super-fit and were psychologically ready for Jonah and the mighty All Blacks. It was my job to act as a speedbump,” he chuckles.

With the British & Irish Lions tour fast approaching, van der Westhuizen says he’ll be keeping a keen eye on Australia this summer, having been a key part of the last side to lose to the touring team, despite scoring a try in the second and third Tests in 1997. “Oh, don’t mention it,” he smiles. “I’ll always regret losing that Lions series. I’ve always said
that we would have won that series if  we’d had a consistent goalkicker, but the reality is we didn’t and I’ll always feel blessed to have played against such a special team.”

The Lions disappointment isn’t van der Westhuizen’s greatest source of rugby regret, however. That falls to the 1999 World Cup, when the Springboks went down 27-21 to Australia in the semi-finals, Wallaby fly-half Stephen Larkham scoring a memorable drop-goal in extra-time.

“Before the game, our coach Nick Mallett said, ‘Whatever you do, keep the ball’. I remember late on, I threw a dummy on the 22 and made a line break with only Matt Burke to beat. Even now, I run it over in my mind. ‘What if I’d played my own game and chipped?’ I should have backed myself but for some reason Nick’s words stuck in my mind, so I took the contact and kept the ball and the chance went begging, leaving John Eales to go on and win the World Cup for Australia,” he says ruefully.

Rivalry: Joost had an enduring battle with George Gregan and the Wallabies

With the interview coming to a close to allow van der Westhuizen to receive treatment for his weakening muscles, I ask him, when the time comes, what he would like his legacy to be?

Without pausing to think, the 42-year-old locks me with that famous icy stare and smiles. “I want to be remembered as someone who cared. Rugby has been good to me and if I die tomorrow, I’ll die a happy man.”

Good luck, Joost, the rugby world is behind you.