by Max Domi
“You have to be disciplined about checking your blood and taking your insulin. Don’t take any chances,” said my dad.
“You know how important this is and what the consequences are,” my mom warned. “As long as you follow all the steps for managing your blood sugar, there’s nothing you can’t do.”
What I wanted to do more than anything else was play hockey. My parents were constantly thinking about my health and how to help me be a normal kid. But most of the time I was thinking, Having to poke myself with all these needles sucks, but at least I get to play hockey.
There were lots of kids my age who were diagnosed with diabetes and still played sports. But competing in AAA hockey was sort of pushing the boundaries. I had gained back most of the weight I’d lost when I was sick, but now I had to get back in my routine.
At first I forgot things all the time. I had a big backpack full of everything I might need throughout the day—insulin, snacks, juice, my glucose meter—but I hated carrying it. I didn’t want to stand out or look different from any of my classmates. I’d try to forget that I had diabetes and act the same as any other kid. But, like it or not, I wasn’t the same.
My diabetes was constantly reminding me of that. I would be walking from one class to another and then realize I hadn’t tested my blood for a few hours. That meant I would panic, not knowing what my blood sugar was, which only made things worse.
To help protect me, my parents sat down with my teachers and the administrators at my school to explain my situation. My mom went out and bought a ton of juice boxes, which she gave to the school. After the meeting with my parents, every teacher kept a little row of juice boxes right behind their desk. It gave me—and the teachers—a lot more peace of mind knowing we had that safety net there in case of emergencies. A few of the teachers in particular—Max Perron, David Bacon, and Richard Vien—went above and beyond to make sure that I felt like I never had to ask for help.
My mom was always the most on top of everything. She taught herself more about the disease than anyone else in my family, and she made sure I was prepared for everything.
That was so important in the early days of my disease. Early on, after I was diagnosed, I could never tell what my blood sugar level was. It took time to learn how to listen to my body. Some people can learn a new thing right away. That was never me. It took me a few months at least before I got a handle on how many blood tests I needed throughout the day.
My friends were really curious about my new routines. One day, at recess, my friends Rob Adamo and his brother, Victor, came up to me while I was testing my blood.
“What’s a good number?” Rob asked.
“It depends on what I’ve eaten, how I’m feeling, that kind of thing,” I said.
Rob looked at the glucose meter. “Can I try?” he asked.
I showed Rob how to prick the tip of his finger and deposit a bit of blood onto a fresh test strip. A few seconds later, the screen on the glucose meter lit up.
“4.4,” I said, using the Canadian measurement system for blood sugar levels of millimoles per liter (mmol/L), the equivalent of 80 milligrams per deciliter (mg/dL) in the U.S. system.
“Is that good?” Rob asked.
I laughed. “It’s good. It means you don’t have diabetes.”
Years later, Rob told me that, in that moment, he realized how much more I had to think through and consider my every choice on an everyday basis. At the time, though, I was just at the start of my learning curve. The more I learned about how my body responded to things, the easier my day-to-day became. I needed that, because hockey was starting to really pick up. Right after I was diagnosed in the spring of 2007, I attended tryouts for the AAA Don Mills Flyers. I made the team, which meant I would be leaving the Toronto Marlboros and starting the next season with the Flyers in the fall.
I had worn the number 13 my whole life because of Mats Sundin. I patterned my whole game after Mats, so I wore 13 in honor of him.
But when I went to Don Mills, it hit me that I was playing for the Flyers—Bobby Clarke’s team. Bobby Clarke wore number 16, and the number was available when I started with the team. The more I thought about it, the more I wanted to switch my number so that I could honor Bobby Clarke. But I was worried that I would upset Mats if I changed numbers, so I decided to run it by my dad.
“Dad, do you think Mats would be upset if I switched numbers?” I asked.
My dad laughed. “I don’t think he would mind at all.”
“Are you sure? Can you ask him?”
Of course, Mats was fine with it. As soon as I heard that, I decided that I would wear number 16 from then on.
Early into my first season with the Don Mills Flyers, I was in Whitby, Ontario, for the annual Silver Stick Tournament. The tournament is a big deal for youth—it brings out teams from across Canada and the U.S.—and the crowds are usually packed.
Between a couple of my games, my mom was sitting in the stands when she noticed some people approaching a man for autographs. When the crowd parted, my mom saw who it was: Bobby Clarke. She waited for a break in the crowd, and then she went up to him.
“I don’t usually do this, Mr. Clarke,” she said. “In fact, I have never done this. But is there any way you could come and meet my son? He has type 1 diabetes and he plays for the Flyers—he even changed his jersey number recently to honor you. He wants to play in the NHL someday, and I know he would love to meet you. Is there any way you could come talk to him?”
I was in the dressing room when one of my coaches came over.
“Max,” he said. “There’s someone here to see you.”
Then Bobby Clarke walked through the door. I was in awe. Neither of us said a whole lot—I didn’t know what to say. But we had our picture taken and he wished me luck in the tournament. A minute later, he was gone.
It was a blur, but in my mind it was the coolest thing that had ever happened to me. I was so fired up, as though nothing could stop me. Knowing that Bobby Clarke had done it—he’d not only made it to the NHL but been one of the best who played the game—gave me confidence that I could do the same.
Even now, there isn’t a day that goes by when I don’t think of Bobby Clarke; I wouldn’t be where I am today without his inspiration. At the time, between my diagnosis and hockey getting more serious, my days of living a stress-free life were over. I knew that the responsibility of taking care of my diabetes was now with me 24/7. I was going to have to think carefully about every single thing I did, not just to make it to the NHL, but just to survive. But with Bobby Clarke’s number on my back, I was ready for whatever came next.
3 ALWAYS HAVE A PLAN
Once I got over the shock of being diagnosed with type 1 diabetes, I didn’t have any doubts at all that I wanted to keep playing hockey—it was what I wanted to do more than anything. The rink was my escape. As soon as I stepped on the ice, all I had to focus on was hockey; everything else just melted away.
Still, I was worried about how far I could push my body. I was scared of what would happen if I went low. I didn’t want to miss a shift during a game. Anytime my blood sugar started to go low, it affected my play—when I started missing passes that I usually didn’t miss or screwing up simple drills, I’d know it was coming. Soon after, I would feel my skating slow down, and my stickhandling would become sluggish. It would make me frustrated, which would only make things worse.
As a person with diabetes, everything you do has to have a plan. When you wake up, you go through your checklist—your mental one, and, for me personally, a physical one—as you work your way through what will be going on that particular day. You visualize what you need to get through it, where you’re going to be, and what to bring with you. Preparation is the key.
Of course, I didn’t have that level of planning when I was thirteen years old. When I was off the ice, I’d often go to my buddies’ houses, where all my friends would be playing street hockey or basketball. I’d get there, and it would hit me that I didn’
t have my test kit with me, so I couldn’t monitor my blood sugar.
Forgetting your test kit is a crucial mistake for a person with diabetes, so you’d think it would be the one thing I would never do. If you’re at the movies and you go high, or you’re playing basketball in someone’s driveway and you go low, you need to know right away so that you can solve the problem.
But there are days when you wake up and you’re not thinking clearly, and training your brain to remember all of the little things takes a lot of practice. Every time I forgot my kit, I’d tell myself that I had to take my condition more seriously and be better about remembering the one thing I was supposed to do every day. Gradually I got better, but not without making a lot of mistakes.
Whenever I left the house, my dad was all over me, checking to make sure I had everything I needed.
“Max, take another juice box with you.”
“Dad, leave me alone—I feel fine.”
“You might need it later.”
“I’ll be fine.”
Sure enough, I would pay the price for my stubbornness later in the day. I would be in the middle of class or in the car, and my blood sugar would go low. This is not good, I’d think as I got the sweats and started to feel light-headed. I wish there was some juice around here.
In those first few months after my diagnosis, I was so shy that I didn’t even feel comfortable testing my blood in the hockey dressing room or in class at school, because I didn’t want to draw attention to myself. Whenever I absolutely had to, I tried to hide it.
The only person I wouldn’t mind testing myself in front of was Darnell Nurse. He was one of my closest buddies and I knew I could trust him. The first time Darnell saw me testing my blood in the dressing room, he asked what I was doing.
“It’s no big deal,” I said, trying to play it cool. “I just have to do a quick test.”
“Do you have diabetes?” Darnell asked.
I looked up in surprise. “You know about diabetes?”
“Yeah, man. My grandparents both had it. But I didn’t think anyone our age could have it.”
I was relieved to find someone who knew what diabetes could look like. But I was still self-conscious about it around people. A few months later, I was at the movies with my friends Robert and Charlie. During the movie, I had to test my blood. That alone was quite the process in the dark—the pop of the test kit container sounded deafening in the quiet theater, and it took me longer than usual as I fumbled around with the lancet, trying to fit the tip of my finger to the test strip. When I finally finished, my glucose meter showed I was a 2.7mmol/L (roughly 47mg/dL), which was too low. I stood up and was about to go to the snack stand to get a drink, when Robert stood up instead.
“I saw you’re low—I’ll get you a juice,” he whispered. I sat back down, grateful for having such good friends.
After the movie, I thanked Robert again for stepping out in the middle of the movie.
“No worries, man,” he said. “I knew you were excited for that movie.”
“I know, but I didn’t want anyone else to miss it,” I said.
“You don’t have to hide your testing from us,” Robert said. “It’s kind of cool.”
“What are you talking about?” I said. “It’s embarrassing. Can you imagine if I had to pull out my glucose meter in front of a girl?”
Robert and Charlie looked at each other. “Actually, that’d be great,” Robert said.
“I can’t think of a better icebreaker than that,” Charlie said with a grin.
I should have been comfortable testing myself in front of anyone and everyone—I know now that there is nothing to be ashamed of when it comes to our health, physical or mental. But I wasn’t comfortable, and that was a problem. The number one rule when you have diabetes at a young age is to communicate—you have to let everyone know what is going on.
My parents knew that none of that would stop me from playing hockey. But they also knew the kind of person I was and that I had a habit of forgetting things. So my mom made sure to tell the coaches of the Don Mills Flyers about my diabetes and what to look out for.
My coaches worked hard to educate themselves about my diabetes, and they were always dialed in. But knowing the warning signs didn’t mean much if I didn’t speak up. If I didn’t tell the coaches I was feeling unwell, they wouldn’t know there was a problem. And I never spoke up. I never wanted to be seen as different than anyone else or draw attention to myself. I wanted to fly under the radar and do my thing. I already had enough attention because of my dad; I didn’t need any more. Extra attention just made me uncomfortable.
In my first few practices with the Flyers, I tried not to say anything. I didn’t want anyone to think I was looking for special treatment. But that approach didn’t last long.
My coaches quickly learned that if I started to gaze into space, or if I wasn’t making sense with my words, or if I was easily turning pucks over in practice, something was wrong. They’d quietly come over and suggest that I test my blood sugar levels, and sure enough, I was usually low.
I didn’t realize how much easier it became once I made sure everyone around me was kept in the loop. When I finally started letting my coaches know what was going on, they were completely understanding. They would tell me, “Your health is number one. If you don’t feel right, don’t ever feel bad about just going to the bench until you’re good to go.”
Sometimes, though, it was just a matter of grinding through whatever I was facing. When I was fourteen, I played on a summer hockey team called the Regional Express Gold. Coach Dalt ran the team, and his practices were insane—some of the hardest I’ve ever had. He was strict, to say the least—Coach Dalt was also a corrections officer.
I knew some of the guys on the summer team, but most of them played in a different league than me in the fall, so I’d never seen them before. Because I didn’t know anyone that well, I wasn’t comfortable telling them about my diabetes. I didn’t want them wondering why I was the one guy who stopped partway through drills to go to the bench and drink Gatorade. The way I saw it, if someone ever bailed on a drill in practice, it was a sign they couldn’t take it. Needless to say, I didn’t want to be that guy.
Sure enough, we were in the middle of a brutal practice, and my blood sugar started to go low. As I waited in line for one drill, I could feel my energy lagging. I don’t want to be here anymore, I thought. It wasn’t a thought that would ever cross my mind when my levels were normal.
I had already finished the one Gatorade that I had brought, and I didn’t have anything else with me. The combination of the active insulin and the intense practice had caused my blood sugar level to plummet, and the Gatorade wasn’t enough. For the first time ever, I started looking at the clock, hoping the practice would end.
Coach Dalt screamed at us, “Go hard!” He used to call me “Boomer.” I have no idea why. As I struggled down the ice, he kept yelling, “Let’s go, Boomer! Move it!” I was in so much pain that I could barely think straight—I had to will myself to the end.
Somehow I made it through the rest of the practice. Afterward, I sat in the dressing room silently, feeling as though I was going to faint. It had been tough physically, but more than that, mentally I was completely shot. No doctor or nurse, no parent, no coach would ever have condoned what I did, but in that moment, I was trying to find my way and see how far I could go.
Moments like that showed me how much easier it would be to compete when I was fully prepared. At first it seemed overwhelming—I’d have to do this forever, after all. But the more I thought about it, the more I realized that if I just added a few more things to my checklist when I was getting ready, I could avoid all sorts of pain later on.
Treating my diabetes became part of my daily routine, like getting my sticks ready on a game day. The same way that I would never go on the ice if my sticks weren’t taped properly, I needed to take the extra time to make sure my body was ready. And the same way that I would never pack m
y hockey bag without my skates, I made sure to never go to the rink without my test kit, insulin, and something to treat my lows. What had seemed like such an insurmountable challenge before suddenly became much more manageable. I just had to stay disciplined.
My parents had the same line of thinking. They were great about making sure that my diabetes never held me back from doing the same things as other kids. But they both drew the line when it came to parties. Their attitude was that, if I wanted to be a hockey player, they were going to invest a lot of time and money in me, and I had better take it seriously. My mom was a little looser about it. But my dad was incredibly strict.
When I was eight years old, my dad told me, “I am going to treat you like an NHL player. I will help you in every way I can. But you have to take this seriously.”
That meant not just playing hockey, but training like an NHL player in the off-season. Luckily, I really liked running. It started when I was kid. One of my first trainers was Charlie Francis. Charlie was one of the best track-and-field coaches of all time. At times, though, it seemed as though Charlie was less coach, more wizard. If I wasn’t running well, he would walk to me, pinch the skin on the side of my arm, and, if he didn’t like the feel, he’d look at me and say, “You didn’t drink enough water today.” He was always right.
I loved working with Charlie, so I didn’t see our training sessions as work. Still, I had to approach the sessions with the same level of discipline I brought to any game or practice. Training in general was a challenge. Different types of workouts—weight training versus cardio—taxed my system in different ways. And as a person with diabetes, changes in each energy system would affect my blood glucose in different ways.
On the days when I hit a wall on the track or didn’t have a great day on the ice, I took my dad’s words to heart and tried my best. There were ups and downs—a few times, I said, “Screw this, I want to go to a movie with my buddies. I don’t care if I have a game tomorrow.” My dad wasn’t pleased when I pushed back like that, but I knew that he wanted the best for me.