Glory Game: The Joost van der Westhuizen Story

By Joost Van der Westhuizen and Odette Schwegler

In 2011 the world was shocked when the news broke that Joost van der Westhuizen, known for years as the golden boy of South African rugby and a former Springbok captain, had been diagnosed with motor neuron disease (MND). This rare condition attacks the central nervous system, causing progressive disability. There is no known cure. All who have seen Joost in action will know that he is not one to give up without a fight. His game-changing prowess as a brilliant scrum half is now focused on a battle for survival and, more importantly, on making a difference to the lives of others with the disease. In a race against time, Joost has a dream to fulfil. He says: "In the beginning you go through all the emotions and you ask, 'Why me?' It's quite simple. 'Why not me?' If I have to go through this to help future generations, why not me?" His acceptance of his symptoms is equally pragmatic: "One day you can't move your arm, another day you don't have speech. Every day you are reborn and you take the day as it comes." Glory Game – The Joost van der Westhuizen Story is a compelling narrative of redemption set against the backdrop of an illustrious career in rugby. It is the story of a modern-day warrior forced to face his own human frailty. Joost shows us that beyond ambition, success and fame lies the true wealth of family and friends, and that within a ravaged body the spirit can remain invincible.

• Language: English
• Publisher: Tracey McDonald Publishers
• Release date: Nov 10, 2016
• ISBN: 9780620711005

Book preview

GLORY GAME

The Joost van der Westhuizen Story

JOOST VAN DER WESTHUIZEN

and

ODETTE SCHWEGLER

First published by Tracey McDonald Publishers, 2016

Office: 5 Quelea Street, Fourways, Johannesburg, South Africa, 2191

www.traceymcdonaldpublishers.com

Copyright © Joost van der Westhuizen and Odette Schwegler, 2016

All rights reserved.

No part of this book may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior written permission from the publisher.

ISBN 978-0-620-71099-2

eISBN 978-0-620-71100-5 ePUB

eISBN 978-0-620-71101-2 PDF

Narrative compilation by Tamara Oberholster, Word Chef

Text design and typesetting by Reneé Naudé

Cover compilation by Apple Pie Graphics

Life is not measured by the number of years lived but by the number of memories created.

JOOST VAN DER WESTHUIZEN

CONTENTS

Prologue Chapter 1: Things fall apart

Chapter 2: Joost – South Africa’s famous number 9 player

Perspective: John Webb

Chapter 3: Life with MND

Chapter 4: Joost’s darkest days

Perspective: Ruda Landman

Chapter 5: Understanding MND

Perspective: Michael Yelseth

Chapter 6: A medical perspective on ALS and algae

Chapter 7: A holistic approach to ALS/MND

Chapter 8: Recovering family values

Perspective: Pieter van der Westhuizen

Chapter 9: A story about all of us

Chapter 10: What do zebra fish and stem cells have to do with MND?

Chapter 11: Getting to do life with Joost

Chapter 12: The rugby family

Perspective: Gavin Varejes

Chapter 13: Creating special memories for MND sufferers

Perspective: Jan du Plessis

Chapter 14: A man on a mission

Epilogue

MND quick reference guide

PROLOGUE

Making the documentary Glory Game, The Joost van der Westhuizen Story has been a life-changing experience for me. It’s more than a beautiful story we got the chance to tell of a hero, his fall from grace, his redemption and his life lessons. It’s given me a friend for life in Joost, and taught me about what it means to be human. It has become a defining project for me and for the whole team that was involved in making the documentary. It’s been a heart project and I am really proud of Glory Game. It’s more than my first feature-length documentary – it’s actually done something in this world and there is no greater reward than that as a film maker.

The film almost didn’t get made though. I had met Joost when we did a piece on him and his Motor Neuron Disease (MND) diagnosis for the TV investigative journalism series Carte Blanche in 2012, and had been moved by his story. Previously, I had known him only as most people did – South Africa’s celebrated rugby legend and Springbok scrum half. But, making that twenty-minute film segment for Carte Blanche, I got a glimpse of something more.

I must admit that we weren’t expecting the response we got when the programme aired. Our viewers went nuts, the media took it on and social media exploded. There were people setting up Facebook support pages for Joost, and international media were covering his story. And this came out of a context where people hadn’t believed Joost was sick. This was the first time he had engaged about his illness, and manned up properly about the scandal that had earlier rocked his reputation (involving a sex tape of him and a woman who wasn’t his wife). People could also see he really was sick.

The way people reacted, and the way I had been moved myself, made me think that maybe there was an opportunity here to tell the full story. It was more than Joost, the man. It was a story that people could identify with deeply – a story about human fallibility, courage and redemption, and I believed that through Joost’s own story, all of those things could be explored.

But how could I ask a man who had been given so little time to live if I could have a chunk of his time? How could I ask a man with a progressive disease if I could come into his life with cameras and film the reality of that disease, with all the challenges it would throw at him?

It took me six months to work up the courage to ask him. It was a very difficult thing to ask. As the media we have a reputation as vultures or predators who prey on people’s lives and benefit from their stories. I really didn’t want to be that person.

I had mentioned my idea to John Webb, my colleague and fellow journalist, and he was keen to be involved. He pushed me towards asking Joost. Still, I hesitated. Eventually I thought, Well, maybe he would want to tell his story. So we set up a meeting.

I put my proposal to him, and the only thing he asked was, How much of the next two years of my life do you want?

We had taken a very clear decision that this wasn’t going to be a story where we followed him to his deathbed, so I told him we would need six months at most. And he agreed. And so we started. He agreed on 16 February 2013, and we started filming at his forty-second birthday party on 20 February.

We didn’t have funding and for nine months we filmed unfunded, which were some of the scariest months of my life. In the end, it took us eighteen months to make the film. And although it took longer than I’d promised him, I honestly believe that making Glory Game became an integral part of Joost’s journey.

Through making the film, he was able to look forward, set his eyes on the next goal and do something proactive. This isn’t a man who was going to sit around and wait for death. He was game for anything. No matter how difficult things were for him, emotionally or physically, he almost never said No when we asked something of him.

Over the course of filming we grew to trust each other, and even his family, who are understandably not particularly fond of the media, eventually chose to trust us in their lives. That was so valuable to us, and I don’t think the film would have been the success it has been without that level of trust.

There were parts of filming that required us to live together, and that sometimes meant helping Joost with daily living – getting up and down stairs, eating breakfast, or helping him to play a prank on one of the crew members (and there were lots of pranks). He was so easy to work with. He surprised me again and again with how willing he was, and how he would always be the first one to crack a joke, even after a long day of filming when things hadn’t gone to plan.

From being strangers at his forty-second birthday party, we became friends and then extended family. On our final day of filming, I said to Joost. This is it – the last day. And he looked at me and said, What now?

I’m proud that making Glory Game has helped Joost in his quest to educate people about MND, to fund research around the disease and to generate support for South African beneficiaries of his J9 Foundation, who have also been diagnosed with MND.

During the making of the film we travelled with Joost to the UK and the USA. Through the vehicle of the film Joost was able to visit the Massachusetts General Hospital in Boston, USA, to take part in clinical trials, and The Eleanor and Lou Gehrig Center in New York City. The latter inspired him to work towards creating multidisciplinary care centres for MND patients in South Africa. The Joost van der Westhuizen Centre for Neurodegeneration was founded to do just that, and works to establish a network of multidisciplinary clinics at public hospitals across the country.

It’s been a journey of personal growth and discovering a new passion for me, too. As well as getting to know and love Joost like a brother (and he teases me just like a brother would!), I have become involved in advocating for MND research in South Africa.

I sit on the board of both the J9 Foundation and the Joost van der Westhuizen Centre for Neurodegeneration. We have also been able to establish dedicated MND clinics at the Tygerberg, Groote Schuur and Chris Hani Baragwanath hospitals, offering patients regular access to a range of therapies.

The film created the pathway for all that to happen.

I am immensely proud of the team who created Glory Game and grateful to Joost for his willingness, his unfailing sense of humour, his positive approach to life and MND and, most of all, for his trust and friendship.

I see this book as a way of continuing our journey in bringing MND into the spotlight, and in introducing people to the real Joost. He’s more than one of the greatest number 9 Springbok jersey wearers ever to have played rugby. He’s also more than a hero who fell, redeemed himself and is now serving others who have been diagnosed with the same disease he has. He is a special individual who is teaching us all about what it means to be human.

Odette Schwegler, director of Glory Game

Chapter 1

Things fall apart

Birthdays are happy times – times of celebration, with gifts and cake and family. But as the final touches are put on this birthday cake – the chocolate icing, sprinkles and candles – there is also an air of sadness lurking beneath the party atmosphere. As friends and family gather, dressed for an Oscars theme, everyone is putting on a brave face, but there’s only one man cracking jokes – the birthday boy.

Dressed as Forrest Gump, Joost van der Westhuizen, one of South Africa’s greatest living rugby legends, speaks slowly into the microphone. My momma always said, ‘Life is like a box of chocolates. You never know what you’re going to get.’

There’s laughter from the crowd and some cheers, but mixed in there somewhere there are also tears. Diagnosed with motor neuron disease (MND) in 2011, Joost has been given just two years to live. This celebration, held on 20 February 2013, is on the night of his forty-second birthday, and everyone present is acutely aware that it might be the last birthday he celebrates. MND causes progressive paralysis and there is no known cure. Joost is living on borrowed time.

Despite this, Joost is in good spirits – determined to enjoy his party with the people he loves. He calls his father, Gustav van der Westhuizen (Senior), to the stage. Their birthdays are just three days apart. With tears welling in his eyes, Gustav says that he has promised his son that he will sponsor the following year’s birthday party. Now there are more tears. Still, Joost seems unperturbed.

Joost said to me, ‘ They think they aren’t going to see me again, but I’ll show them,’