“There are two things people take for granted every day: Time and health. When you lose those, then you wake up.”
— Joost van der Westhuizen
In 1994, Nelson Mandela became the first black President of South Africa. That same year, South Africa also hosted the Rugby World Cup. In that tournament, the home team, the Springboks, overcame considerably unfavorable odds and decades of international isolation (due to the government’s policy of apartheid) to win the Rugby World Cup. This is widely considered one of the greatest moments of South African sporting history and was the basis for the 2009 film Invictus. On that team was a young scrum-half named Joost van der Westhuizen.
In 2003 Joost retired from rugby. By then he was a superstar of South African rugby, having more caps than any other South African player. In 2011 the rugby world suffered a blow with the news that Joost had been diagnosed with ALS. Rather than retreat from the world, Joost decided to make a difference in the lives of people also coping with this dread diagnosis. He formed the J9 Foundation to educate the general public and medical practitioners about ALS, grow ALS research in South Africa, and to aid other South African PALS.
Joost’s story has been made into a documentary called “Glory Game“. In addition to the trailer, you can read about the movie here. The film has done well in South Africa and is now going to be shown first in Vancouver, British Columbia, on April 10, 2016 and in Los Angeles, California, on April 15, 2016. I urge all my friends in those areas to go see it. I have seen it and it’s simultaneously hilarious, upsetting, and uplifting. It shows the courage and determination which made Joost van der Westhuizen such a force on the rugby pitch. I am proud to call him and the Director of the film, Odette Schwegler, my friends.
On Monday of last week, this excellent PSA was released by Team Gleason. It was shown on the big screens inside the Superdome but needs to be shown repeatedly on major network television (ie ABC/CBS/NBC). Please watch, share with friends, and send to your local network television stations. This is the kind of message that needs to get in front of the eyeballs of America. This is the celebrity action we have been asking for. Now let’s do our part in getting it out there.
People often ask, “How do you do this?” The simple answer is, I have no choice. There is only one alternative and that only interests me in terms of rhetoric not experience.
But there is a deeper answer. Anyone who knows me will tell you that I can be one stubborn cuss. My grandmother used to say that I would argue with a fence post. I have always lived on my terms (often to my detriment) and this presented challenges which I learned to overcome. My chosen profession (Information Technology) gave me unique and complex challenges every day.
Motor Neuron Disease is just another challenge. I see no reason why this one can’t be overcome. MND tries to define you: how you look, how you act, how you live, and how you die. I have defined myself and am not about to change. Instead of MND defining me, I define it. It is hurdle to jump. It is a hill to ski. It is just another event in which I compete.
Like an Olympic athlete, technology gives me the equipment to compete. Assistive equipment allows me mobility, helps with personal tasks, and keeps me nearly as engaged with the external world as when I was healthy. And it keeps me alive.
As with Olympic athletes, I am part of a team. I have a personal team of family, caregivers and doctors without whom I could not succeed. These are my coaches, trainers, and equipment handlers.
I compete for them as well as for myself. And I am competing for the Gold.
That is why I do this: I intend to win.