Don’t feel sorry for me – Joost

July 17, 2014
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Joost van der Westhuizen knows his days are numbered, but he is remaining positive in the face of the inevitable, writes CLINTON VAN DER BERG from SARugbyMag.co.za 

There’s no getting away from it. Joost van der Westhuizen looks in bad shape. Seated in a wheelchair, his face is drawn, his left hand is gnarled and his legs and arms are emaciated.

What makes this image worse is the memory of Joost the rugby player: strong, vris, physical; the picture of Afrikaner masculinity.

Yet two things continue to define the man of yesterday and today. The first is his piercing turquoise eyes. Despite everything, they still shine with vitality. The other is his sense of humour, which somehow remains from the life he once knew.

It is impossible to shake his hand. Where once he used the left to prop up his right, he can no longer even do that. A gentle squeeze of his leg and a knowing smile must suffice.

We meet in the office of business titan Gavin Varejes, a friend of Van der Westhuizen and the man who started the SA Rugby Legends Association. Varejes’s style is to crack a naughty joke and shoot the breeze with the Springbok icon. No outward sympathy, no cheesy philosophising.

‘If you feel sorry for me, get out of my life,’ says Van der Westhuizen defiantly.

A fortnight before, Varejes’s company had hosted the Legends, among them Stefan Terblanche, John Smit and Krynauw Otto, at an evening function.

Van der Westhuizen arrived in his wheelchair. Later, away from the manne stooped over their wines and beers, he retched in the flowerbed. He went to ICU that same night and stayed three days.

‘This is his life,’ says Varejes, a benevolent figure whose philanthropy towards Van der Westhuizen is a constant, reassuring undertow.

A year ago Van der Westhuizen’s speech was slow and deliberate. Now, his tongue’s muscle function is almost completely depleted. He speaks, but the words don’t come. Not as they form in his head anyway, but rather as a slurred jumble that is difficult to comprehend.

Van der Westhuizen was only ever direct and engaging, bursting with humour and enthusiasm. Despite a life that has been in freefall since he was diagnosed with motor neuron disease (MND) 43 months ago, he retains that impish persona. His speech, as jarred as it is, is interspersed with cheeky comments and his mood throughout is improbably resolute and determined.

No one knows precisely what causes MND. What we do know is it is a savage disease that affects the body’s muscular activity yet has no impact on brain function whatsoever. Victims, mostly men, generally survive for three to five years from diagnosis.

Van der Westhuizen is as lucid and as engaging as possible under the circumstances. The irony of seeing this once magnificent physical beast – the man they broke the scrumhalf mould to create – reduced to a frail shadow of his former self isn’t lost on him. Yet he’s not bitter or angry. Anything but.

‘I’m happy I got MND,’ he says, incredulously. ‘I now know what life is all about. The more positive you are, the longer you will live.’

It’s a remarkably sanguine outlook for someone with his condition, but Van der Westhuizen has clearly worked hard at coming to terms with it. He’s always been a pragmatist. First, when working his way from the wrong side of the Pretoria tracks into the heart of the Springbok team, all the way to captaincy. And then redefining what scrumhalf play meant through force of will and physicality.

As the most high-profile sufferer of MND in South Africa, Van der Westhuizen has shone a light on a disease said to affect 400,000 people worldwide.

Locally, the numbers are unknown, not least because many sufferers are said to go misdiagnosed. In many rural communities it is   mistakenly claimed they have HIV or are possessed by demons. Such is the mystery that continues to surround the affliction.

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Van der Westhuizen’s days are carefully planned to negate fatigue and include constant care. He has tried traditional medicine, and continues to consult neurologists, but has vested his immediate hopes in alternative medicine. He reasons, quite understandably, that he has little to lose.

Part of his regimen includes two daily doses of Tasmanian goat serum, prescribed by a doctor in London. At £200 (R3,600) a shot, the costs are horrendous. He also continues to work with self-described detox specialist Anton Neethling, notwithstanding an outcry over Neethling’s unorthodox methods, described as ‘alternative therapy’.

Van der Westhuizen couldn’t care less about those who claim Neethling is a quack. He says Neethling has helped slow the devastating consequences of MND, of which he has the worst strain, ALS (amyotrophic lateral sclerosis).

‘Our bodies are made to recover. If you cut yourself, your body heals you,’ says Van der Westhuizen. ‘If I can get my body as close to normal [with Neethling’s help], don’t you think there’s a chance it will heal itself? The more positive you are, the longer you’ll live.’

He’s also benefited from the generosity of Steve Gleason, a former NFL star diagnosed with MND in 2011. Gleason, who starred in a Microsoft advert broadcast during the Super Bowl, sent him a Microsoft Surface Tablet. Using eye tracking software, users can type out words, which the machine then speaks. Another smart piece of software allows for basic household chores, like putting on the kettle or switching on the lights. For now, it’s packed away in a cupboard. ‘I’ll use it only when I need to,’ says Van der Westhuizen, barely hinting at the inevitable further erosion of his faculties. He knows, with shuddering certainty, that day will come.

He enjoys his role as a crusader, not least because it gives his life more meaning. ‘It’s not about me; it’s about what I can do. I have amazing, positive friends, people who want to assist.’

These include rugby’s great brotherhood. International icons like Justin Marshall, George Gregan and Matt Dawson, scrumhalves all, have done yeoman work supporting Van der Westhuizen and his foundation. They will happily hop on a plane at short notice to attend a fundraiser, having done so numerous times.

Last year, at a fundraising dinner auction in London, Shane Warne sheepishly asked if he could offer anything. An hour in the nets at Lord’s, someone suggested. ‘But what if no one bids?’ Warne asked. He hadn’t reckoned on the warmth and empathy that surrounds Van der Westhuizen – one punter snapped up the session for £10,000 (R180,000).

‘What Joost has done is give MND an identity,’ says Varejes. ‘No one knew about it, but as more cases come to light, the more we understand.’

One happy consequence is that Tygerberg Hospital is in talks with the J9 Foundation about the possibility of establishing a wing for MND sufferers. With Van der Westhuizen the driver of this initiative, there is also hope of a virtual laboratory, perhaps also a satellite one, taking hold.

He is determined that his legacy will amount to more than mere rugby.

His eyes light up at the prospect, although reality tempers his enthusiasm. The sad truth, he says, is that there are more neurologists in one building in the United Kingdom than in the whole of South Africa. It is a situation that only adds to his fight for self and for others.

It’s this attitude that informs his daily existence. His initial loss of strength, the first hint of which was a simple arm twitch in September 2010, was shattering. For a man who traded so emphatically in his rare physical gifts, the possibility of losing his strength amounted to nothing less than a loss of manhood. It hit him hard. But then he did what he always does: he sucked it up.

‘Adapt or die,’ became his motto. ‘There was no good sitting and moaning, not even when the neurologist told me to go home and rest.’

Indeed, asked if he does rehabilitation, he sniggers. ‘No. Too busy.’ He reckons he gets more done this way.

‘What’s served me well is my will to live … my two kids, they need a dad. Also, everyone around me treats me as normal. There’s no room for pity.’

Asked if his faith had been rocked by the terrors of the disease, Van der Westhuizen was unequivocal.

‘There’s a difference between belief and religion. My religion is the same, but my belief is 100 times more than it once was. I’m very comfortable, very happy. This thing has humbled me. I now know what life is about.’

As indeed he does about his own mortality, acknowledging that MND is a death sentence no matter his sunny outlook. ‘But there’s no time to worry about that.’ There are people to see and work to be done.

As he reflects on a recent Bulls win in Super Rugby, we both marvel at how time has flown by, with next year marking 20 years since Van der Westhuizen and his beloved Springboks won the World Cup so heroically.

A 20-year reunion is planned. Van der Westhuizen, who tackled Jonah Lomu so fiercely and made that pass to Joel Stransky in the final, promises to be there.

‘You bet your life on it,’ he says, bursting into laughter.

For just a moment, he’s the Joost of old. It’s the perfect memory to walk away with.

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