Hockey hero loses battle with ALS
Norm McCauley admits he was responsible for his younger brother Chris getting his first stitches.
McCauley remembers he was about eight years old then and Chris about four or five. Norm was just learning to raise the puck, a huge rite of passage for any young hockey player.
"We were out playing road hockey and it was a winter night, just before supper, and it was dark already," he recalled of that night in their hometown of Exeter (about 50 kilometres north of London) sometime back in the late 1960s. "I got this beautiful wrist shot off. Chris was in goal and I remember, quite succinctly, I put it right off his right temple and gashed him for a few good ones.
"I was going, 'Oh, this is not good.'"
Chris and his twin brother Mike were younger than Norm. Tim, another brother, would also play.
"We would have epic ball hockey games," added the Barrie Colts midget 'AAA' coach. "In those days if you didn't have a goalie you would go and find somebody's six-year-old brother and put them in net. That was kind of the idea."
The warm childhood memories of Chris rush back to Norm just like they were only yesterday. Surrounded by wife Maria and his family at home in Barrie, Chris, 54, passed away peacefully Aug. 9 of complications from Amyotrophic Lateral Sclerosis (also known as ALS or Lou Gehrig's disease).
A standout hockey player with the London Knights and Western University Mustangs and a caring social worker, Chris fought long and hard against a disease that gradually paralyzes people because the brain is no longer able to communicate with muscles of the body.
Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, eat, swallow and eventually breathe.
Following his diagnosis in 2015, Chris dedicated his life and worked tirelessly to help find treatments for ALS and ultimately a cure.
"The thing about Chris, and this speaks to his character, he was still conducting his affairs right until the very end," McCauley said. "He was still trying to read and stay focused, and send out emails."
Chris was heavily involved with ALS Canada, specifically Project MinE. The initiative, which involves more than 15 countries, is aimed at making ALS easier to study and enable scientists to better understand the genetic signature that leads someone to develop the disease with the potential to identify new genetic causes that lead to effective treatments.
Chris served as ALS Canada's ambassador for Project MinE.
"If Chris can help fundraise for something that alleviates or makes somebody else's suffering and pain less, than that's a good thing," McCauley said. "In a beautiful world a cure, prevention would be incredible. But just to make somebody's life easier because you did a bit of work ahead of time, that would be terrific."
Marilyn and Terry McCauley had six kids of which Chris and Mike were born in the middle.
Norm said his brother was just a normal kid growing up first in Exeter and then Alliston when the family moved there in 1970.
And of course, like many Canadian kids, he loved hockey and playing the sport with his friends.
"He loved the brotherhood of the neighbourhood and the ball hockey games and hand hockey games in the living room before, during and after Toronto Maple Leafs games much to my dad's chagrin," Norm said, before laughing out loud.
Chris not only loved hockey, he was an excellent player. The sport, Norm explained, came to him naturally.
"Chris was one of those guys that he could skate the second he put on a pair of skates," he said. "There wasn't much of a learning curve. A lot of kids toddle around for many years, but Chris could just skate. He had that knack and ability.
"He played in era where the idea of a finesse defenceman wasn't valued. It was how big you were and how many guys could you cross check in front of the net. If Chris played in today's era, he'd be treated like gold because of his ability to skate and his hockey IQ."
He won two Ontario minor hockey championships in Alliston - the only two Alliston has ever won - one in 1977 with the midgets and the following year as a bantam along with Mike.
A defenceman, he was drafted by London in the second round (23rd overall) of the 1979 Ontario Major Junior Hockey League (now OHL) draft. He would play with the Knights from 1979-83, with his best season coming in 1981-82 when he recorded 47 goals and 67 assists for 114 points to finish eighth overall in league scoring.
The Pittsburgh Penguins would select him in the 11th round of the 1982 NHL Entry Draft.
"Chris was an elite player," Norm said. "He had comparisons to Bobby Orr when he was drafted by the Knights and he was uncomfortable with that. That's his personality."
Chris played hard, Norm explained, but his brother always wanted to attain more knowledge so he could go out and help people.
"He just loved being with his buddies and he loved playing the game," he said of Chris, whose funeral was held Monday morning at Alliston's St. Paul The Apostle Church. "I don't think he enjoyed the burden of being the next superstar, which was the label attached to him fairly early.
"At the end of the day, Chris just wanted to be an excellent human being. That was his main goal. He just happened to be an elite hockey player."
He was a standout on the ice at Western and in the classroom at the university he earned a physical education degree. But Chris realized he didn't want to be a teacher and ended up going back to school later on.
He got his bachelor's in social work at McMaster University going to school part time in the summers and then moved to Ottawa to resume his Masters degree at Carleton University.
Chris was a mediator, a helper and that would certainly be the role he would go on to play in his professional life as a social worker.
"He had that empathetic core of him that he just wanted to help people," Norm said of his brother, who also played a couple of years of professional hockey in Austria and Great Britain. "It wasn't shocking that he did social work. It didn't surprise me that he did choose that eventual pathway."
And he was really good at it, said Norm. He knew his stuff. He was focused, just like he was in a hockey game.
"It's sad," McCauley said of his brother's passing. "It's heartbreaking for our family, but (then) you realize someday that he's done all this good."
McCauley was devastated when Chris told him he had ALS.
"I couldn't breathe for a month," he said. "It was a complete kick in the balls."
Chris was always focused and passionate when he went all-in on something. His work on ALS was no different.
Sometimes Norm would tell his brother, "OK, relax. Slow down."
Chris would march on.
"OK, my brain is fine and I've got to do some emails," Norm, laughing, said of how his brother responded.
Not once did Norm hear his brother complain. Not once.
Chris left his mark and now his family and friends want to continue that legacy.
"He left something for my family and I, specifically, and his friends," McCauley said. "I know a lot of his hockey friends are devoted to assisting us with fundraising and to move that forward."
Norm says awareness is key and that people have to realize that they can truly make a difference.
With no cure and no effective treatments, approximately 80 per cent of people with ALS will die within two to five years of being diagnosed.
"Maybe it's not a cure, but maybe it's something that alleviates the toll of dependency, i.e. that you're in a chair 24/7," he explained. "Something that stops the progression of the motor neuron. This can only be done with sustained fundraising and sustained focus on research."
Up until the time he passed away, Chris had been working on a visual display on a day in the life of a person with ALS. Based around fundraising for Project MinE, the video will go into a package and a new initiative at Western University.
McCauley was amazed with Chris' work and the script, which he wrote himself.
"I thought someone came in from an ad agency," he said. "It was just awesome. He did that two or three weeks ago."
A loving stepfather to Aaron and Luc, Chris loved his family and his 12 nephews and nieces.
"He had no kids of his own, but he just loved his nieces and nephews," McCauley said. "He adored them. They adored him. He had that in him."
Close to the end, Chris still wanted to make phone calls. He was proud of continuing the work. He wanted to be himself to the bitter end and he was, says his older brother.
"He didn't let the disease define him," he said. "That was part of his strength for sure."