At the rink where he has coached boys’ ice hockey for more than 10 years, Adam Welburn-Ross, 43, is fondly known as “Coach Sunshine.” He wears his positivity as a badge of honour and now that he is living with ALS, his disposition is helping everyone around him appreciate every precious moment of the day. Shortly after learning about her son’s diagnosis, Adam’s mom, Gail, told him, “It’s your positivity that’s going to get us all through!”

Adam acknowledges that ALS has dealt him a level of adversity he has never faced before, but he feels confident he has the kind of nature that makes him well equipped to deal with it emotionally. Looking on the bright side doesn’t stop him from facing the disease head-on. “I am a realist. I can tell you what this disease is going to do to me down the road. I am not blind to that, but I don’t think I need to get too far ahead of myself. I live in the moment,” says Adam.

Accepting his diagnosis with grace and courage allows Adam to continue finding joy in each day. He makes a point of reminding himself that any negative turn of events is not necessarily a permanent change. One bad day can be followed by a better one.

Adam’s coaching career has been a key factor in helping him discover meaning in his life. For years, he has been preaching the Erindale Spitfires hockey team motto: “Skill, determination, and a never quit attitude.” “Now that I have my own adversity,” he says, “and as I learn new skills to deal with ALS, I have to practise what I’ve been telling the players all along. It’s been a really important factor in my attitude since my diagnosis.”

Adam says kids define who he is — not only his two biological children, but also the players he’s coached over the years.  He started out coaching his kids , Emma and Zander. For a young father who had dreamed of having children since his teenage years, Adam found that coaching was a wonderful way to spend time with his kids. “As time passed, I realized I was also adopting hundreds of other kids into my life and being a positive role model and influence for them,” says Adam. “You talk about what you’re doing here on this planet – helping to raise these young adults  and providing guidance gives me meaning. It keeps me motivated.”

ALS progresses at different rates for different people. Although the typical prognosis is from two to five years, Adam knows that some people can live much longer. He is uncertain how quickly his symptoms will change, but he remains optimistic. And he’s already looking forward to coaching the Spitfires again next season. “I want to live vicariously through my players to see what they will do,” he says. He’s grateful for all the support he receives from his extended family and his hockey family, but he is also focused outwards, thinking about others he has influenced, and wondering how those lives will turn out.

Adam is doing his part to get the message across. He is fundraising for the Walk to End ALS and in considering ways he can help to create change, is one of the faces of ALS Canada’s advocacy campaign that is running throughout June for ALS Awareness Month.

He is also raising awareness close to home. Getting out in the community and talking openly about ALS is important. “I need people to see what is happening and how I’ve progressed,” he says. “ALS doesn’t change who I am and what I’m about, it’s just something I have to deal with.”

Adam’s zest for life is a rare gift. He makes every day, every moment, count.

“I’ve found a lot of purpose in this disease – something I can contribute to positively and that’s my intention.”

It’s about time for Adam and others facing ALS to have a different reality – one that gives them more time with their friends, family and loved ones. It’s about time to let them know that they need to make people living with ALS a priority. 

Posted in: Advocacy