Former South African rugby player Joost van der Westhuizen is considered by many fans and commentators to be one of the best to ever play the game. Yet, for the last two years he has been struggling with an opponent far tougher than any he encountered on the field: amyotrophic lateral sclerosis, better known in the United States as Lou Gehrig’s disease.
Van der Westhuizen is on a 13-day tour of the United States in order to raise awareness about ALS, learn more about how it is treated in the United States, and assist researchers in their study of the disease. Van der Westhuizen’s travels are being recorded by filmmaker Odette Schwegler, who for nearly a year has been making a documentary on his battle with ALS.
As a part of his visit, Van der Westhuizen visited the National Baseball Hall of Fame in Cooperstown on Jan. 30, specifically to see its exhibits on Lou Gehrig.
“I had to come here. I wanna know more about the person, how he was treated, how he realized about the disease,” said Van der Westhuizen.
“The Lou Gehrig story is central to the story of ALS,” said Schwegler.
Gehrig, a Hall of Fame baseball player with the New York Yankees, died from ALS, two years after being diagnosed.
ALS is a motor neuron disease that causes muscle weakness and atrophy because of to the decay of motor neurons in the brain and spinal cord. Eventually, afflicted persons lose the ability to control their movements and paralysis and death ensues. The life expectancy of those diagnosed with ALS generally averages between two and five years.
At the Hall, Van der Westhuizen was met by Hall of Fame President Jeff Idelson, and was given a tour by the Hall’s director of communications Craig Muder, which started with the Hall’s exhibits on Gehrig.
“It was our honor to host Joost, a world-class rugby player, and the crew documenting his courageous fight against a disease similar to the one that took the lives of Hall of Famers Lou Gehrig and Catfish Hunter. Joost’s desire to learn more about Gehrig’s story and his willingness to share details of his own battle were both humbling and inspiring,” said Idelson.
“I love it, great people,” said Van der Westhuizen, when asked for his thoughts about Cooperstown. “Everyone is so … friendly and accommodating.”
Diagnosed in 2011, ALS has confined Van der Westhuizen to a wheel chair, and has made it difficult for him to speak. This has not stopped him, however, from becoming an advocate for people with the disease.
Van der Westhuizen has founded the J9 Foundation, nine was his number when he played rugby, which provides support for South African individuals and families afflicted by ALS and other motor neuron diseases.
Financial support, education and home visits are some of the methods by which the foundation helps those with motor neuron diseases, with a focus on improving quality of life.
“We have over 40 ALS beneficiaries,” said Van der Westhuizen, who says it is the only foundation of its kind on the continent of Africa.
Van der Westhuizen recently visited the Euan MacDonald Centre in Scotland, which is dedicated to the study of motor neuron diseases, as part of a tour of the United Kingdom. The visit resulted in the center and the J9 Foundation entering into a collabaration. Van der Westhuizen hopes to found a similar center in South Africa.
It is for this reason that Van der Westhuizen visited the Eleanor and Lou Gehrig MDA/ALS Multidisciplinary Care Center on his trip, in order to learn about how the disease is treated in the United States.
“With all of the information, my aim is to open a center … for ALS patients back home,” said Van der Westhuizen.
He also praised work being done on ALS in the United States.
“To see the dedication of the people in America towards ALS is phenomenal,” said Van der Westhuizen.
There are many theories surrounding the causes of ALS, one of which posits a link between head trauma and the disease.
“That is why I’m going to Boston,” said Van der Westhuizen, who visited Massachusetts General Hospital on Jan. 31 for clinical studies by researchers examining this theory.
Van der Westhuizen is also going to New Orleans to visit former New Orleans Saint’s football player Steve Gleason, who was diagnosed with ALS around the same time that Van der Westhuizen was. Gleason is the founder of Team Gleason, a foundation dedicated to providing quality of life for ALS sufferers.
Van der Westhuizen played rugby from 1993 to 2003, was part of the 1995 South African team that won the Rugby World Cup, is a former captain of South Africa’s rugby team and has been called the greatest scrum-half to have ever played the game.
When asked if he saw any parallels between himself and Gehrig, who played 2,130 consecutive games and is considered one of the greatest hitters of all time, as an athlete, Van Der Westhuizen said, “He sound(s) like me. I’m a self confident, bad loser. I hate to lose.”
Schwegler also sees similarities, noting Gehrig’s nickname as, “The Iron Horse.”
“Joost played the finals of the Rugby World Cup with a broken rib, it’s the same sort of person,” said Schwegler.
Schwegler first encounter Van der Westhuizen about a year and a half ago, after doing a story on him and his struggle with ALS for the South African television program Carte Blanche.
“That went really well. The country went mad,” said Schwegler.
Six months later, she asked Van der Westhuizen to do a documentary on him.
“Straight away he said yes,” said Schwegler.
While Schwegler said she’d expected the documentary to take only six months, it has now been filming for almost a year.
“The documentary has just taken on its own life really,” said Schwegler.
Schwegler says that part of the reason for this is that she and her fellow filmmakers have become emotionally invested in Van der Westhuizen’s cause.
“We started by doing a documentary but it’s become much more than that,” said Schwegler.”It’s become personal.”
Indeed, Schwegler, has accepted a position as a trustee of the J9 Foundation, something she describes as “an absolute privilege.”
Van der Westhuizen is similarly excited by the documentary.
“It motivates me,” he said. “I want to get up every morning.”
Schwegler says that one of the reasons for the documentary is to raise awareness about ALS and Van der Westhuizen’s efforts.
Currently, Van der Westhuizen is in negotiations with the University of Cape Town for a business plan for the ALS center he hopes to establish. After this negotiation is complete, Van der Westhuizen says he plans to go “full steam ahead” with fundraising efforts to establish it.
“Obviously it’s gonna cost a lot of money, but … you have to start somewhere,” said Van der Westhuizen.
Schwegler says she plans to finish filming in a few months, and editing the documentary by June. She say that it will first be broadcast on television in South Africa, after which she plans on taking it to various film festivals around the world, including the Sundance Film Festival in the United States.
Asked what his plans are for the future besides working with the J9 Foundation, Van der Westhuizen said, ““I’m (going) to live a long happy life with my family,” as he believes scientists are on the brink of a cure.
Indeed, family is a focus for Van der Westhuizen, who has two young children. Early on in his struggle with ALS, he said that he told his family that he wanted them to stay positive.
“I told them, if you’re going to be emotional, and cry all the time, you’re going to make me negative,” said Van der Westhuizen. “For now, I’m still alive. We’re gonna have fun, we’re gonna make memories, and we’re gonna enjoy life.”