* Gulf News conducted what is believed to be the last interview with Joost van der Westhuizen late last year and were awaiting clearance from his family to run the feature. But sadly, the South African rugby legend died on Monday after suffering from motor neuron disease for more than five years. As a posthumous tribute to him and to his tireless campaign to help fellow MND sufferers – which included an annual charity match at the Dubai Rugby Sevens for his J9 Foundation – we have decided to publish this.
Abu Dhabi: Consigned to a wheelchair, barely able to speak or move, Joost van der Westhuizen’s deterioration from a rugby union player of supreme dynamism was a shock to behold to those present at a Dubai hotel bar in November 2013.
But, despite his body being weak and wasting, the former South Africa captain’s spirit shone through in the glint in his piercing blue eyes and mischievous grin.
“For he’s a jolly good fellow,” Van der Westhuizen’s former teammates, opponents and assembled media (including myself) sang after wiping away the tears at seeing a legend’s tragic decline.
Two years earlier, Van der Westhuizen’s world had collapsed when he was diagnosed with motor neuron disease, an incurable and progressive condition that attacks the motor neurons, or nerves, in the brain and spinal cord.
This means messages gradually stop reaching muscles, which leads to weakness and wasting and typically claims the lives of its sufferers three to five years after diagnosis.
“I am a prisoner in my own body,” was Van der Westhuizen’s jarringly grim, yet eminently apposite, assessment of his plight.
But the 45-year-old former scrum-half did not give up without an almighty fight, displaying the same courage and fortitude as he did as a ferocious competitor in 89 caps for his country.
Arguably the greatest player in the world in his position in an illustrious career between 1993 and 2003, Van der Westhuizen’s crowning glory came in 1995 when South Africa won their maiden Rugby World Cup on home soil.
But he would then transcend rugby when he spearheaded a campaign to support MND sufferers worldwide and raise funds towards research into this most debilitating of diseases, clinging to the hope that one day a cure will be found.
And, as he told Gulf News in a rare interview by email, the UAE has played a central part in his crusade – and he was eager that it continues to support those like him.
Former rivals and teammates make a pilgrimage to Dubai at the end of every year to take part in the Dubai Rugby Sevens as the J9 Legends team to raise money for Van der Westhuizen’s J9 Foundation.
They also hold a fundraising evening, although Van der Westhuizen’s worsening condition meant he was not been able to join them since that emotional night in late 2013.
But he was with them in spirit and even responded to his supporters’ questions by email, which he uses via an eye-tracking machine, at the 2015 gala.
“It [the UAE fundraising] means a lot as we can create awareness and show people they are not alone,” Van der Westhuizen said. “People tend to hide and we want to show them that they still have the right to live. I would just like to thank the people in Dubai who have supported us and to those who will in the future, the disease is unknown to most and only with your help can we change that situation.
“We also need these people to come forward as any research done is more accurate if we have better stats and individuals to case study etc.
“The foundation supports our beneficiaries by sharing new findings of possible cures and we are a family who share their fights and advice with each other. Positivity is essential for people with MND.”
“I always enjoy Dubai and think it’s a stunning place to visit,” he added. “The people are friendly and the place is just awesome.”
He was similarly passionate about everything he could possibly do to help find a cure for MND, including taking expensive goat serum and participating in brain research in Boston.
His J9 Foundation has supported more than 50 families and funded three multi-disciplined treatment centres in South Africa, where the disease remains largely marginalised given that it is not as common as something such as cancer.
Van der Westhuizen was proud that his Foundation has been groundbreaking in his homeland in terms of pressing for much-needed research into MND – and was eager to further this in the UK and Dubai.
Some specialists believe Van der Westhuizen’s MND could have been caused by his exposure to environmental toxins, such as fertilisers on rugby pitches, and point to the fact that before putting the ball into a scrum, he used to lick his two hands.
“I know about that and I know researches are also looking at that possibility,” Van der Westhuizen said. “However, research is expensive and until we can get enough funding for it, they can’t conclude any of these theories.”
How confident was he about a cure being found?
“Yes, there will be a cure soon. We have people all around the world working and searching for a cure.”
Van der Westhuizen’s positivity was remarkable, especially given that he once said that MND was “the best thing that ever happened to me”.
How did he explain such an astonishing remark?
“MND gave me time to think. It made me realise what life is about.
“My life values are different, I get to make the most of the time I have here, whereas there are people in this world who never get to do that as they just procrastinate their entire life until it is too late.”
Van der Westhhuizen unstinting desire to live life to the fullest despite his cruel affliction revolved around his profound love for his two children – his 13-year-old son Jordan and 10-year-old daughter Katie. They, quite simply, were his raison d’etre and he strived to live as normal a life with them as possible within the confines of his physical incarceration.
“In the morning, I take my son to school,” he said of his daily routine. “I will then catch up on mails and start working. When I’m tired, I’ll lie down.
“It’s frustrating not to use my body and to not be able to talk, but I try get to as many of my children’s extra-curricular activities as possible as my children are the joy of my life.”
Jordan and Katie clearly felt likewise, given that a sign on the wall of the Van der Westhuizen household reads: “If you don’t believe in heroes, then you haven’t met my dad.”
Did Van der Westhuizen consider himself to be a hero?
“I don’t think I’m a hero. It is, however, great to know that people have learnt enough from me to call me that, that something I have done means that much to an individual, particularly my children.
“My children mean everything to me.”
*Visit www.joost.co.za for information about the J9 Foundation.
FACTFILE
Born: February 20, 1971, Pretoria
• Position: Scrum-half
• Test caps: 89
• Test tries: 38
• International debut: v Argentina, Buenos Aires, November 1993
• Last match: v New Zealand, Melbourne, November 2003
• Major honours: World Cup winner 1995; captain at 1999 World Cup; Currie Cup winner 1998 & 2002; Tri-Nations winner 1998
