Three Letters That Changed His Life

Scott Matzka, who spent parts of two seasons in the AHL with the Griffins and Cleveland Barons, had dreams of playing in the NHL. Fate, however, had different plans for his life.

Story by Mark Newman

Like thousands of hockey players, Scott Matzka saw the AHL as an opportunity, another step closer to his dream of making it to the NHL.

A native of Port Huron, Matzka excelled at the University of Michigan, where he assisted on the game-winning overtime goal by Josh Langfeld in the 1998 NCAA title game, the last national championship claimed by the Wolverines.

Matzka started his pro career in the ECHL with the Atlantic City Boardwalk Bullies in 2001-02 and, like Langfeld, would eventually play for the Griffins that season, recording one goal in four games with Grand Rapids.

He returned to the AHL the following season with Cleveland, registering one goal and six assists in 14 games with the Barons. It would prove to be his last appearance in the AHL as he opted to head overseas, where he spent seven seasons playing hockey in Germany, Denmark, Sweden, Finland, and Great Britain.

Matzka, who had studied computer science at Michigan, left professional hockey in 2012 after 10 seasons to enter the business world, working for a software developer in Kalamazoo, where he settled with his wife, Catie, and their young family.

As a professional athlete, Matzka had spent a lifetime paying close attention to his body and the signals it sent him, so he became concerned during the spring of 2014 when he began to experience stiffening in his fingers, cramping, and eventually muscle twitches and tremors.

What followed was a seemingly endless string of consultations and tests – MRIs of the brain and spine, electromyography (EMG) and neuroconductivity evaluations – that led to the diagnosis he feared: ALS.

Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s disease, is a rapidly progressive, invariably fatal neurological disease that attacks the nerves (neurons) responsible for controlling voluntary muscles, including the ability to speak and breathe. The life expectancy of ALS patients is three to five years from the onset of symptoms.

During a TEDx talk that he delivered at the University of Michigan in 2017, Matzka remembered the fateful day that he went to Bronson Hospital in Kalamazoo and received the news.

“It was August 20, 2014,” he recalled. “The neurologist brought us back into his office, shut the door, and asked us to sit down. I knew something was wrong. I don’t remember much about what he said over the next several minutes, but I do remember him using three letters that changed my life forever: ALS.

“I prayed that he wouldn’t use those letters. I had Googled my symptoms more times than I could count over the previous few months and I knew what those letters meant. ALS is 100 percent fatal. There is no treatment and ALS has no cure. Wow. What do you do with that kind of news?”

As a hockey player, Matzka knew he had to fight, to do everything in his power to make the most of the time he had remaining.

“I had a choice,” he said. “I could play the victim and blame a higher power or feel sorry for myself and stop living, (but) honestly, it didn’t feel like I had much of choice at all. That’s not how I had lived my life before, so why would I start now?”

And yet living with ALS was a sobering experience. Suddenly simple tasks like buttoning a shirt weren’t so simple anymore.

“ALS is paralyzing my body and taking away my ability to speak and breathe on my own. More than that, ALS is stealing my future,” he said during his TEDx talk. “I will not walk my daughter Reece down the aisle someday. I will not meet the wife of my son Owen. I will not hold a grandchild. ALS is going to kill me. I’m 38 years old… a sobering thought, I know.”

Nevertheless, Matzka refused to let his disease defeat him.

“We all have choices,” he said. “It’s not much different than the choices we all make after losing a loved one, a job, or as an athlete suffering a career-ending injury. I felt like I had a choice. I could lie down or I could stand up.

“I chose to live life to the fullest: to love, to laugh and to soak up every moment that I had left. More importantly, I have chosen to be a difference maker. I formed My Turn, an organization dedicated to spreading awareness about ALS. It has become my guiding light, my reason to get out of bed every morning, and my legacy – my opportunity to do something bigger than myself.”

Many people go through life never knowing their purpose, but Matzka believed that ALS revealed his. He became an advocate, telling his story as a means of helping his family while furthering the cause of ALS research and assisting others affected by the condition.

His organization was formed to energize a network of family, friends, colleagues, and associates to rally behind the cause of creating a greater awareness of ALS and its impact on millions of lives.

“It would be easy to see the world as a dark and scary place, but what we have seen is almost the exact opposite,” Matzka said. “We have seen unwavering support and compassion from our friends and family, of course, as well as from ex-teammates and teams I’ve played for, but also from people I had never met and from places I have never visited.

“The support and messages of encouragement hoisted me up and allowed me and my family to face this stressful disease head-on. It has pushed me to be a better person, a better father, a better son, a better husband and a better friend.”

As long as Matzka had a voice, he vowed to continue to speak out and share his story. He held charity golf outings in Kalamazoo to raise money for his cause. He refused to go quietly even as his days were numbered.

Griffins head coach Ben Simon played against Matzka in college and again in Great Britain. They played for Sheffield (43-10-0-1) and Cardiff (42-9-2-1), respectively, the top two teams in the British Elite Ice Hockey League during the 2010-11 season.

“Scott was one of those guys who was considered a bit undersized (5-11), but he worked hard for every opportunity that he ever got,” Simon said. “Now as a coach, I can see he was one of those guys you can count on to be a hard, dependable worker. He was a fighter.”

With Simon’s wife being from Kalamazoo, it was inevitable that they would meet again in their post-playing days. “We had a lot of mutual friends,” Simon said. “I didn’t know him that well, but something like ALS draws the hockey community closer together.

“He did a tremendous job of generating awareness about ALS, not just from the standpoint of financial donations, but also by getting people to talk about it and increase the overall awareness of ALS in the hopes of finding a cure.

“It’s really unfortunate what happened, but he managed to put a happy face on it every day for his wife and his kids, and I think he touched a lot of lives… all for the better.”

For his part, Matzka remained steadfast. He faced his daily challenges with unfailing courage.

“I have not looked at my diagnosis as the end but rather as the beginning of a new opportunity, a beginning of a movement – My Turn,” he said during his TEDx talk, which can be viewed on YouTube. “We might only be a tiny pebble in a pond, but I can see the ripple. With enough ripples, maybe we can make a wave. With enough waves, we can create a tsunami.

“Now it’s your turn to stand up, it’s your turn to look at your life differently, and it’s your turn to become a difference maker. This disease is going to silence me, but it’s not going to silence all of us. Together, we can’t be stopped.”

Matzka died on Dec. 16, 2018, at the age of 40. He is survived by his wife Catie, daughter Reese, 9, and son Owen, 6.