As our kids lay in their beds, my wife, Catie, and I sat at our kitchen table one evening across from my parents under a pale light.
It was May 2014. They had made the trip to our home in Kalamazoo, Mich., to see their grandchildren, but their visit was about to take a turn. They looked like they knew something was up: Their eyes darted back and forth between Catie and me.
In a tiny crevice of my brain, hidden in a dark place, I was terrified that there was something very wrong with me. I’d talked about it with Catie, and now it was time to tell my parents.
So, I began talking.
I told them what I had been noticing for the last few months, since January 2014, two years after my professional hockey career ended.
I told them what would happen to me even when I was performing the simplest tasks, like working in the garage or around the yard.
I told them what would happen to me in the car, when all I wanted to do was grab a couple of quarters from the middle console.
I told them what would happen to me when I went on a run with a couple of buddies or played with my kids at the park.
My hand and forearm muscles were randomly seizing and cramping. At first, I thought it was nothing.
I told them that, despite being in great shape and only 36, I had this weird sensation that something was out of whack. My hand and forearm muscles were randomly seizing and cramping. At first, I thought it was nothing. But the more it happened, the more concerned I became. It was like an invisible force was taking over my body.
After the first couple of mild episodes, I started googling my symptoms: muscle lock; inability to make a fist; fatigue. The things that popped up most often were pinched nerves and dehydration.
But there was also something else that kept showing up. And it scared me to death. Three awful letters and a name.
“I think there are a couple of things this could be,” I continued. “But there’s also this one thing — this black cloud — that keeps showing up.”
My dad looked right at me.
“Lou Gehrig’s disease.”
After a pause, I said, “Yeah.”
My mom jumped in: “What’s that? What are you talking about? What is that?”
Amyotrophic lateral sclerosis. ALS. Three terrible letters. I wanted to say, “Relax, Mom, it’s all going to be O.K.,” but I didn’t know. People hear the words Lou Gehrig’s disease and know it’s something bad. But they usually don’t know how bad.
I had done enough research to understand what ALS does to you, how your motor skills deteriorate and your muscles atrophy until you die because your body can’t support itself anymore. I told my parents that at one point that spring I had told Catie that I thought we should buy more life insurance. I had gone to see my general practitioner a week or two earlier, and when I explained my symptoms to him, his ever-present smile immediately vanished. He did some preliminary blood tests and ordered a spinal MRI, but those were to rule out other possible problems. ALS doesn’t show up in blood tests and can’t be seen on an MRI.
My family and I tried to make sense of all of this. But we had no idea what was going to happen. After an exhausting evening, we all went to bed. I had a brain MRI at six the next morning, and we all hoped that the results might bring some positive news.
My alarm clock went off at 5:30 a.m. My dad was already awake and ready to go. He drove, just like he had always done when I was playing youth hockey. I’ll never forget those car rides, which shaped our relationship.
But this car ride was obviously different. We weren’t laughing or listening to the radio like we used to. He wasn’t talking much. Because we weren’t going to a hockey game.
We were going to a hospital to try to figure out what was wrong with me. Because we still didn’t know.
I used to be a boy living his dream out on the ice.
When I was 17, I moved away from my home in Port Huron, Mich., to Omaha, where I played junior hockey for the Lancers of the USHL. I then went to the University of Michigan on a hockey scholarship. My freshman year we won the national championship. I’ll never forget that year with that group of guys. It was an amazing time.
It was my dream to play in the NHL, but after four years at Michigan, I wasn’t drafted and didn’t sign a free-agent deal. The best I could do was camp with the Predators, who released me. I eventually found myself in Atlantic City with the Boardwalk Bullies of the ECHL. The Atlantic coast of New Jersey isn’t exactly a hockey hotbed, but we had a talented team (we made it to the conference finals in the first year of the franchise and won the Kelly Cup in the second), an amazing coach and loyal fans.
If there’s one thing I know about the hockey world, it’s that the people in it look out for each other.
College prepares you for a lot of things, but playing minor league hockey isn’t one of them. When you play at Michigan, you get pampered: There are the tutors, the meals, the facilities and, of course, the gear. Everything is first class.
But in the minors, instead of taking chartered flights we were roughing it on 10-hour bus trips between Atlantic City and Toledo. I maintain that getting comfortable enough to fall asleep in those seats was one of the hardest things I had to do throughout my entire hockey career.
In Toledo, we used to play in the Toledo Sports Arena, aka the Old Barn. My goodness that was a crazy place. The glass around the boards was, at most, two feet high. There was practically nothing separating the fans from the visiting team’s bench, so you could hear every crazy alcohol-inspired chirp.
But nothing compares to what I saw in Newcastle, England. In 2010, I moved to Wales to play for the Cardiff Devils. My teammates there tried to prepare me for what to expect when we traveled to Newcastle, but even they admitted they couldn’t do it justice.
When I arrived, I understood what they meant.
We entered the rink, and it was about 150 feet long by 70 feet wide. Most rinks are about 200 by 85. It was nuts. But that was only the beginning. The ice was hollow, so it felt like you were going to break through it at any moment. In the locker room, the toilets were constantly overflowing; the lights would flicker every time you flipped the switch; and the smell of the place took ages to get out of your nose. It was just so dilapidated.
I played minor league hockey for 11 years. Some of my career was in the U.S., in Atlantic City, Grand Rapids, Cleveland and Kalamazoo, but much of it was also in Europe, where I played in Germany, Denmark, Sweden, Finland and, yes, the U.K. I made some of my best friends in those 11 years, partly because hockey took me to places I never would have gone otherwise. There are so many good people in this country and around the world.
And recently, I’ve been getting back in touch with a lot of those people. If there’s one thing I know about the hockey world, it’s that the people in it look out for each other. They know that playing professional hockey is every little boy’s dream — everyone who laces ’em up is connected through that common bond. We care for each other. We feel each other’s pain.
And I’m so fortunate to have them by my side.
A few days after the 6 a.m. MRI, I had a follow-up visit with my general practitioner to discuss the results. To that point, my general practitioner had never mentioned ALS. Not at my first appointment and not at any follow-ups. Never. I hadn’t either.
But that didn’t mean that I wasn’t thinking about it all the time. And while he was explaining to me and Catie that my MRI had shown no abnormalities, I couldn’t help but think, Well, yeah, of course there aren’t. ALS doesn’t show up in these tests.
But Catie decided to come with me to this particular appointment. And she wanted answers.
“I have to ask you, doctor,” she said. “Could this be ALS?”
He paused. Then he looked right at Catie.
“I can’t rule it out,” he said. “Yes, it could be.”
And then the doctor said something that made Catie’s eyes brighten up, and her heart start to race.
It was the first time a professional told us that this awful disease could affect our family. I was 36 years old with a beautiful wife and two young kids. I knew that most people with ALS die within three-to-five years after the diagnosis. So with that thought rattling our brains, and knowing that ALS is a disorder of the nervous system, our first call was to a neurologist.
Catie came with me to my first neurological appointment. With her at my side, I told the doctor my symptoms, and how they had been worsening since I first felt them in January.
“Well,” the doctor said, “are you feeling any tremors in your legs or feet?”
I didn’t quite understand what that meant exactly, so I told him I hadn’t.
“We’re afraid this could be something serious,” I said, turning to Catie. “But I’m still running two to three times a week, lifting regularly and playing a bunch of sports. I feel healthy … it’s just these weird episodes that concern me.”
We spent about 30 minutes talking, going over everything from my cramping episodes to my diet. I told him how my general practitioner had said he couldn’t rule out ALS. And then the doctor said something that made Catie’s eyes brighten up, and her heart start to race.
“Scott, your symptoms aren’t progressing like normal ALS patients. I don’t think this is ALS.”
Catie’s shoulders dropped as she exhaled. I put my hand on hers. We both smiled and laughed nervously.
“Really?” I wasn’t so sure. I just had this inclination about how the appointment was going to end.
“Yes,” the doctor replied, “But we’ll want to perform some tests just to make sure.”
Properly diagnosing ALS is incredibly difficult. There are no definitive tests for it, but there are some diagnostic tests that can help doctors detect its presence. At first, the doctor gave me a brief neurological exam, pushing against my hands, fingers and knees and asking me to resist. I did everything without much trouble.
We then moved to an electromyography, or an EMG. During an EMG, doctors apply electrode needles all over your body and send electrical signals through your muscles with a two-pronged device. Basically, the doctor records how these signals move through your muscles: For healthy individuals, the signals move a certain way; for those with ALS or other neuromuscular degenerative diseases, they move another way.
The doctor applied the electrodes to my hands, arms and legs and started the test. He asked me to engage my muscles, so I started moving my hand. On the nearby computer screen, we could all see lines shooting up and as I flexed and relaxed.
He peeled the electrodes off. I can still remember the feeling of him doing that.
“Can you move your hand again, Scott?”
I did. He looked back up at the monitor. He inched a little closer to it.
“Hmm.” He looked back at us. “I’m going to go talk with a colleague for a moment. Stay here. I’ll be right back.”
Catie and I sat there looking at each other. She turned pale. What was going on? Why was he going to get another doctor? What was happening?
A few minutes passed before an older man — definitely a more senior doctor — came into the room. He asked me how I was doing, and then he asked me to give him my hand. He had me point with my index finger.
“Now try to resist me when I push your finger back toward your hand.”
I did. Then he asked me to do it again. He looked up at the monitor.
“Please, give me and my colleague a moment to discuss this.”
The moment he said that, my fears were confirmed.
I knew I had ALS.
And when they returned, you could just tell on their faces that the worst was true.
The younger doctor asked if we would come sit down in his office. He peeled the electrodes off. I can still remember the feeling of him doing that.
Catie and I sat in two chairs across from his desk. His diplomas covered the wall. He leaned over his desk, took a deep breath and pushed the words out of his mouth:
“I am really, really sorry,” he said. “I believe you have limb-onset ALS.”
I sat there motionless. My mind was racing. Catie … she just completely lost it. “No,” she said as the tears started coming. “No!”
I hugged her as hard as I could.
Everything the doctor explained, I already knew about from all my research. I knew that my motor neurons were getting sick. I knew they would stop transmitting signals from my brain to my muscles. I knew that when muscles aren’t being told to do something, they die. I knew about atrophy. I knew about weakness. I knew limb-onset ALS starts in a foot or a hand and works its way in toward the center of the body. I knew that it would slowly paralyze me. I knew it would eventually render me unable to speak or breathe.
I knew that this disease was going to kill me.
Catie and I cried more that day than we ever had before.
When we arrived home, I entered the house and saw my son and daughter, who were two and four, respectively. We didn’t know at that point how fast the disease would progress. (We still really don’t know.) But for a moment, my kids’ laughter filled my heart with love and joy. Looking into their eyes, I saw pure happiness. And for just a moment, I forgot all about ALS.
That night, Catie and I met some of our closest friends for a glass of wine. We talked about what we were going to do with our lives the next day, the next month, the next year.
The two of us decided pretty quickly that we had to live without fear. So the next day, Catie and I, together with her father and our children, went up to Traverse City for the weekend. I often look back at the pictures we took that weekend — us climbing sand dunes, my kids running through a field of sunflowers — and experience the roller coaster of emotions all over again. We were so happy. For two days at least, love was all around us.
And throughout the rest of 2014 and ’15, I tried to take advantage of every moment with my wonderful friends and family. One day, one of my close friends surprised me by showing up at my doorstep with a travel itinerary. We were going to fulfill our dreams by attending the Masters. Later that year, Catie and I went to Maui, where we rented a beachfront house with four other couples in Kapalua. We tried to do everything we had ever dreamed of doing. We were going to have to speed up checking things off of our bucket list.
But over the past couple of months, my symptoms have gotten worse. The muscle atrophy has progressed pretty severely up my arm and into my shoulders. Two years ago, I might have attempted to run a five-minute mile, a huge challenge. Now, walking to the mailbox, buttoning a shirt, showering — those are challenges. And when I get out of the shower, I have to lie down on my bed because I’m exhausted. This is my new normal — taking a shower is my new five-minute mile.
Nothing compares to the difficulty, though, of looking at my kids and knowing they’re going to probably only remember me as a sick man. They are four and seven years old now. They don’t know what ALS is. All they know is that daddy can’t run or skate with them.
And when my kids read this story someday, I want them to know that I fought this disease and that I did everything in my power to defeat it.
And the worst part, the part that wrenches my heart, is reminding them that daddy is probably not going to get better. That’s one of the things with kids — they get a cold and they know they’re going to get better. They scrape their knee and they know it will heal. But I’m sick, and we have to tell them that I won’t get better. It’s confusing. And that hurts. That really, really hurts.
Every time my son or daughter makes me smile, I’m reminded that I won’t be able to talk to them much longer. For me, my ability to communicate with them is so huge. But the disease has already started to affect my voice, which is very troubling. I’d hoped that things wouldn’t progress this far this quickly. And it’s disheartening that their memories of me won’t be teaching them to throw a ball or to take a wrist shot — they’ll be of me struggling to speak.
For however long I have with them, I will cherish every single moment. Thank God that they have an amazing mom, whose love for them will shine through any darkness that we may experience.
Coping with this disease is incredibly hard, and one of the most difficult parts is the financial burden it puts on families afflicted with it. From the respirators to the home care to the medical appointments — it adds up. And when I start to get very sick, I want to make decisions on a quality-of-life basis and not on a financial one. And when my kids read this story someday, I want them to know that I fought this disease and that I did everything in my power to defeat it.
Early this year, I was lucky enough to meet John Frates. John’s son Pete had been diagnosed with ALS in 2012. Two years later, Pete created the Ice Bucket Challenge, which raised $115 million dollars to fight ALS. Pete is now in an advanced stage of the disease, and John and I were discussing what I could do to help. One thing he said really stuck with me.
“Pete had his time carrying the torch,” John said. “But the disease has silenced him. Now it’s your turn.”
That … was … it! Catie and I decided to create an organization called My Turn, which has become a movement, a mantra and a mission. While I have the ability, I’m going to take my turn in doing everything I can to help people who are or will be affected by this terrible disease. It’s all about fighting for other people and spreading a message of hope. I know that my work will most likely not help me survive, but I hope that it will someday help others survive — and thrive.
Life does not end with a diagnosis of ALS. In a way, it’s like a new life has begun for me. And I don’t want to waste it.
This disease can do a lot of terrible things. But it won’t erase my memories, or the thought of my wife and kids smiling. I will never forget our trip to Traverse City the weekend after I was diagnosed. The pictures we have will never degrade. The irony of ALS is that while it destroys your body, your mind remains as sharp as ever. Those moments are moments I’ll never forget — this disease will not take that away from me.
I love my wife and kids so much. I love my family and friends so much. This disease may silence me, but it cannot silence all of us.
Scott and Catie are the founders of My Turn. Please visit http://scottmatzka.com/ to learn more about the disease and how you can help.