Joost’s brave battle

200515 Former Springbok star Joost Van Der Westhuizen shares a laugh during an interview at his house in Dainfern Valley, north of Joburg. The star was diagnosed with Motor Neuron Disease in 2011 and his condition has deteriorated that he cannot walk and talk properly. Picture:Paballo Thekiso

200515 Former Springbok star Joost Van Der Westhuizen shares a laugh during an interview at his house in Dainfern Valley, north of Joburg. The star was diagnosed with Motor Neuron Disease in 2011 and his condition has deteriorated that he cannot walk and talk properly. Picture:Paballo Thekiso

Published May 23, 2015

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Noni Mokati talks to Joost van der Westhuizen who was in a fighting mood despite the fact that he can barely walk or talk.

 

Time is often harsh to heroes. The deeds of their golden youth jar with the the evidence of the slow insidious corrosion of age.

In the case of Joost van der Westhuizen, the ravages of Motor Neuron Disease (MND) are all too evident as he sits in his wheelchair on an autumn day at his Dainfern home. He is barely able to stand, or to move his feet and hands, and struggles to speak.

He is no longer the nuggety, swift and canny rugby scrumhalf whose darting runs struck fear into the heart of his opponents but lifted the hearts of South Africans – one of the men who helped this new Rainbow Nation to an improbable triumph in the Rugby World Cup 20 years ago.

But just as he ran at opponents, and brought down the unstoppable Jonah Lomu, he still refuses to give up. And he is still a team player, using his J9 Foundation to help others afflicted with MND.

“J9 Soldiers. That’s who we are. We go out and try and conquer. People out there have what it takes. You can never beat Mount Everest but you can conquer it.”

His words are interpreted by his older brother Pieter, because the MND has brought on speech impairment.

In the background is a canvas portrait of him as a Springbok captain in his former glory. A large green and gold Springbok book on the table contains an extensive history about South African rugby including that triumphant day – June 24, 1995 – at Ellis Park.

This year, the Boks will again try to lift the trophy… and Joost is steadfast in his support for them. Even within that shrivelling body, Joost’s blood will forever be ‘green and gold’

His bright blue eyes are filled with warmth as he waits to share his thoughts.

“My brain is 100 percent. I still think normal. My tongue is a muscle and might not move but I can still feel senses. Yes, you are prisoner in your own body but you are still a normal human being.”

It is has been almost four years since the father of two revealed he had amyotrophic lateral sclerosis, a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.

The J9 Foundation has assisted many MND sufferers who have been shunned by society because of their illness.

One of these people is a man known as Lucky Manganje from Ga-Rankuwa, north of Pretoria, who was once house-bound after members of his community concluded he had been bewitched or that he was HIV-positive.

When the Foundation came on board to assist him, like anyone who had been given a death sentence, Lucky had a wish: to meet Tendai “Beast” Mtawarira of the Sharks.

When this was arranged, Lucky’s dream was fulfilled.

As his family waits for the day they bid him farewell, Lucky continues to defy the odds and now educates many in the township about the disorder.

Through Pieter, Joost explains what he has learnt of the three “curses” of MND which are assumptions, misdiagnosis and the red tape around the access to healthcare.

“Before I was sick I never knew about this disorder. Now that I have MND I’ve realised how often people are misdiagnosed. The problem, especially in the townships, is that people believe something is wrong with you. That someone has bewitched you. They leave you to die. Moreover medical aid doesn’t cover MND. As it is, we are trying to place pressure on schemes to add it on to their dread disease list. It is a fight…”

As he says it, you know: he’s been in fights before and he’s going to take this one to the end.

He has learnt how people beyond the poverty line rarely afford primary and tertiary healthcare and are forced to save up money before they obtain the medical help they need.

But waiting is certainly something they can’t afford.

“The reality is that there is little time for that. You either act now or your life is cut short,” he says.

With Joost in tow, the J9 Foundation recently toured the UK and Scotland in a bid to establish if there is a cure for MND and conduct research on it.

Sadly there isn’t a cure.

But even so, Joost is impressed with the dedication those working with MND patients have shown and through this has forged relationships with those abroad in a bid to change the status quo in South Africa.

Joost doesn’t want people to feel sorry for him. He wants change, not sympathy.

He’s already proved some wrong – like the doctors who told him he only had a few months to live… and that he would never travel overseas again. Those months have passed and he has gone abroad.

“Who is anyone to tell me how long I’m going to live? I’ve learnt that if you are positive and have support, that is what gives you hope. When you visit someone with MND and to look into their eyes, you can see it in their eyes that they know and understand that someone is giving them support and understands them. That, for me, is always enough.”

Joost recently visited Deon Nel, a Joburg-based MND patient Saturday Star has reported on before. Joost says he and Nel understood each other and could even share jokes.

“You see, it is important to smile and laugh. There are two things we take for granted and that is time and health. I now understand what these things mean. In the past I would postpone important events. I now do everything I can do immediately.”

Meanwhile, Pieter explains that the Foundation has expanded its network of patients and those that have passed on.

“We keep their memories alive in this office and are in constant touch with their families to let them know that they still matter,” he says.

The J9 Foundation has also begun its own research and is busy with preparations for a new centre where MND patients in South Africa can be helped.

And, until the whistle finally blows, Joost will continue to help people.

 

*To make a difference or get help contact the J9 Foundation on 011 469 5621 or visit www.joost.co.za

[email protected]

Saturday Star

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