by Max Domi
I knew the difference between the two because I was living with the disease. But I wasn’t the most patient with others who weren’t as familiar with it. I was a typical teenager—I hated having to explain myself. Why can’t people understand the difference? I wondered.
Because of that, I often had “Why me?” moments. The constant blood testing, the explanations, the carb-counting—most of the time it was just par for the course, but there were times when I felt sorry for myself and complained silently about how unfair it was that I had this disease.
But no matter how badly I felt for myself, things were put in perspective every time I walked through the doors at SickKids. Every three months, as I walked through the hospital to the diabetes clinic at the back, I would pass by kids who were hooked up to IVs or oxygen tanks that were keeping them alive. And yet, when I saw those same kids shopping for a teddy bear or coloring with their family, they had smiles on their faces. In those moments, I was reminded of how truly lucky I was and how, in the grand scheme of things, I didn’t have much to complain about. I realized that life was precious, and I had to enjoy every moment with the people around me.
Everyone talked about my diabetes like it was a struggle or a challenge, something that I suffered from. But I wasn’t suffering. And the more I thought about it, the more I saw my diabetes as a positive. I told myself that I had my diabetes to thank for my preparation and discipline; it was helping me to mature quicker than many of my friends. I realized those kinds of things would make me a better athlete. Having diabetes was a part of who I was, but I would not let the disease define me. I would define the disease.
That improvement in my mind-set was crucial, because every variable in my life could play a factor in affecting my blood sugar. Even today, stress can make my blood sugar go high and then crash. Nerves or anxiety, whether on a game day or an off day, can have the same effect. Too much activity one day can throw off my blood sugar as much as if I am not active the next. Most of the time I was thinking about those diabetes challenges in the context of hockey—I always wanted to be able and ready to play. But that year, I discovered that there were other sports that had an effect on my blood sugar. Among people with type 1 diabetes, certain sports or activities can have an outsized impact on their blood sugar levels, causing them to go really low or really high. For some, it’s golf. For me, it’s basketball. I could guarantee that whenever I played some pickup basketball with my neighbors, my blood sugar would go low. Sometimes I’d use this to my advantage—exercise typically lowers a person’s blood sugar level, because the body burns sugar for energy. So, if my blood sugar was high, I’d go run around outside and shoot some hoops, and my blood sugar levels would drop right down. The same went for swimming—anytime I was in the water, the exertion of swimming and my body keeping itself warm would make my blood sugar go low.
I would often play basketball with friends, and they started to learn than, even when I was locked into a game, I would notice when my blood sugar levels were going low, so we’d stop to take a juice break and allow my blood sugar to climb back up. Today, continuous glucose monitors make it a lot easier to measure where blood sugar levels are and where they’re heading, but they weren’t an option for me at the time.
Another curveball came from being sick, or even just dehydrated. I had to keep myself constantly under the microscope. When I was sick, insulin interacted differently with my system. I typically found my blood sugar levels going very high, and it was a struggle to get them back down again. If my blood sugar levels went off—if I made even the slightest mistake—it could affect me for the next twenty-four hours. Sometimes if I had a severe low, it would take so much out of me that I would still feel drained two days later.
With all the games we were playing and all the intense practices we were having, I couldn’t afford those kinds of mistakes. There had been times in the past when I’d just tell myself I needed a day off from being a person with type 1 diabetes. But that year, with the OHL draft coming up, there was too much on the line. I was willing to do anything to make sure I played.
At times I might have taken that too far. When I was younger, my dad wouldn’t let me play if my blood sugar wasn’t in a certain range. A person without diabetes typically has a fasting blood sugar level anywhere between 3.9 and 5.5mmol/L (70–100mg/dL). After a meal, that number can spike up to around 7.8mmol/L (140mg/dL), but people without diabetes have a balance between their insulin (which lowers blood sugars) and glucagon (which raises blood sugars), so they keep themselves in balance. Almost everyone has felt edgy and hungry if their blood sugar is dropping. Usually that’s not because the person’s blood sugar level itself is low. Rather, their body feels the falling sugar and tells the person that food is needed. But in those cases, even if the person doesn’t eat for hours, nothing bad happens because the body’s natural systems kick in, quickly regulates their blood sugar levels, and maintains the balance.
For people with diabetes, though, the highs and lows are much more dramatic. Their insulin isn’t balanced, and any dose can be too much, causing their blood sugar to fall way too fast. Sometimes, that fall in blood sugar can be so fast that the person doesn’t even know what’s happening and they can lose consciousness. No doctor is holding your hand, telling you what dose of insulin to take. It’s always a calculation based on what you ate, how much you’re going to exercise, and what your blood sugar level is.
My optimal blood sugar level on a normal day off was anywhere between 5mmol/L and 8.5mmol/L (roughly 90mg/L and 154mg/L on the American measurement system). If I was in that range, everything was great. But on game days, there was a much wider range to my numbers, partially because my entire mind-set was focused on the game ahead. Sometimes, my blood sugar level on a game day could jump up as high as eighteen. In those periods of intense or prolonged exercise, I had to be careful to interpret my blood glucose readings really carefully. The high number on my glucose meter reading could be partly caused by the effects of adrenaline and other hormones, not just high glucose, an effect called a “false high.” When that happened, I still often had to give myself insulin to bring my blood sugar level down, but I had to use some guesswork to make a smaller correction than usual.
When the game was about to start and I tested my blood, if I was around a 7 or 8, I could almost guarantee that I would have a good game that night. But if I was a 3 before the game, no matter what I told myself, I knew that if I was going to play to the best of my abilities that night, it was going to demand a lot more mentally and physically. Every game, I learned a bit better where my limits lay and how far I could push them in a healthy, safe way. I’m still learning that to this day.
Even when I was that low, though, I didn’t want others to know it. I wanted to be on the ice, no matter what. If my dad or one of the assistant coaches caught my blood sugar at anything under 4.5, they would force me to sit for ten minutes until my level came back up. It was the right call for a parent and coach to make. But ten minutes is an eternity during a hockey game to sit there and not play.
I didn’t want those sorts of things holding me back. I wanted to stand out that year and catch the OHL scouts’ attention. How else was I going to stay on track for the NHL?
“How’s your blood sugar, Max?” an assistant coach would ask me right before a game.
“It’s a six, I’m good to go,” I’d say. In reality, I could have been as high as 20 and I would have foolishly said the same thing, because I wanted to play.
My parents had my best interests at heart, and after a few games where I went low, they caught on that I wasn’t being honest about my blood sugar levels. They said to everyone on my team, “Whoever is with Max, don’t just ask his level—make sure you look at his glucose meter yourself.”
I tried to work around the system. I’d reassure my coaches that I had just tested by blood and that I was fine, or I’d try to avoid their check-ins.
Looking back, I can’t believe that I thought that was a good ide
a—it was so dangerous, and I wouldn’t recommend that anyone ever try it. But when I was in my mid-teens, playing hockey and getting to the next level meant more to me than always being on top of my diabetes.
That mentality is crazy, and scary for a parent. And I can only imagine how much it screwed up my performance on the ice—I have to admit that, if I’d had perfect blood sugar when I was a minor midget, I would have been a lot better and a lot more consistent. But at the time, I was putting hockey ahead of my health.
Thankfully, that was about to change. That year, my parents and I were connected with a doctor named Bruce Perkins. Bruce was special. For one, he had type 1 diabetes himself. He understood what it felt like to go low. He also understood wanting to push boundaries. Bruce had always done things that were challenging for people with type 1 diabetes—hiking, scuba diving, cycling. He was a well-respected physician, too, so my parents and I sat down with him and asked him for some advice.
“Max, I expect your blood sugar levels are all over the map,” he said when we met.
I was shocked. Because of the competitive level of the hockey I was playing, it was hard to keep my blood sugar levels dialed into an even level. I dreaded the days where I had to go into SickKids and look at the unimpressed expressions on the faces of the doctors and nurses as they reviewed my data.
“Yeah, it can be hard sometimes,” I said.
“I get that,” Bruce said. “Actually, I think I’m a little high right now.”
“Really?” I asked. I couldn’t believe that even a successful doctor who specialized in diabetes wasn’t always perfect when it came to his blood sugar levels.
“It happens to all of us,” Bruce said. “I have so much respect for what you’re doing. I can’t even skate backwards.”
“I want to keep playing hockey,” I said.
“And you will. We will figure this out,” he said. “It will take some time, but we’ll get there. One thing I will say, though, is that no matter how much you want to play hockey, you’re only going to be able to do that if you put your health first.”
I appreciated Bruce’s approach—I got the sense that he wasn’t there to lecture his patients, but to help them find a new way forward.
I listened to Bruce’s advice, and I ended up having a good year with the Flyers. Our team made it all the way to the OHL Cup final, a showcase tournament for the top minor hockey teams across the region.
Leading up to the OHL draft, I had all sorts of different voices—my parents, teammates, classmates, scouts—telling me what I should do next. I changed my mind every day. Monday I was going to the OHL. Tuesday I was convinced I was going to play in the NCAA. Wednesday I was looking at the USHL. I was getting different advice from my mom, from my dad, from my teammates, from my friends at school, everyone. I knew I was going somewhere, I just didn’t know where!
More important, though, I was learning how to get my on-ice temper under control.
During a hockey game, guys will chirp, or insult, you to make you mad and get you off your game. When I was a young kid, that kind of stuff would frustrate me way more than it should have. A guy would slash me in the corner or shadow me wherever I went on the rink, and I’d quickly get upset. I would never complain to a ref or a coach about what the other guy said. I would take care of it myself. Often, though, that meant I’d take a dumb retaliatory penalty by slashing the guy back or pushing him as we went to the bench.
I saved all of my complaints for my parents after those difficult games. They would listen patiently, letting me get it out of my system, before answering. My dad always gave me the same response.
“All those people are just trying to get under your skin,” he said. “If they didn’t say anything to you, then you’d have a problem, because it would mean you’re not good enough to get that kind of attention. If they’re chirping you, that means you’re doing what you need to do to be successful. All they’re doing is trying to get you off of your game.”
My dad told me to watch Sidney Crosby. He would make me watch what Sid went through every game and how he fought through the chirps or the hacking against his wrists, all in the name of being the best player in the league. Everyone was trying to get Sid off of his game, but Sid just did his thing. He took a lot of abuse, and I admired him for that.
Bit by bit, my skin started to thicken. I learned that that kind of talk meant nothing. I knew that, whatever happened on the ice, I had to maintain my focus on what I needed to do that game. As soon as I reacted and took a retaliatory penalty, I lost, and the other guy won. And I always wanted to win.
Of course, that was easier said than done, because my temper could get the better of me. There was a player on the Mississauga Senators named Matt Donnelly who drove me crazy. Driving to games against the Senators, I would get more and more worked up knowing that I was going to have to battle with him.
The most common chirps I heard from Matt and other guys like him who were trying to get under my skin were about my dad. Hearing a guy compare me to my dad, or tell me that I wasn’t him—or even that my dad wasn’t any good—could really throw me off.
Matt and I crossed paths years later, and he turned out to be a great guy—he even came to my defense a few times. Eventually I came to realize that even when someone was trying to get me going on the ice, he might not be a bad guy off of it; that was just the role that he played for his team. When you let those kinds of mind games get to you, it turns a team sport into an individual sport. And when it comes down to it, that’s what matters—the team. You do whatever you need to for the guys on either side of you.
* * *
In February 2011, I had the chance to take part in the Canada Winter Games in Halifax. The tournament was kind of like a mini Olympics for youth—it featured competitions across several sports, and each province sent a team to the competition. I was playing for Team Ontario in the hockey portion. It was my first time representing something bigger than my local hockey team—now I was representing my province. The first time I pulled on my jersey, I was filled with awe and pride.
We had a fantastic team—Jordan Subban was on it, and so were Darnell Nurse and Bo Horvat. Every guy in the room was one of the best—if not the best—player on his minor team. I’d gone head-to-head with a lot of them before, and some of us had long-standing rivalries, but we put all of that aside to focus on winning together.
Our coaches were clear—each of us would have a role on the team, and we were expected to do our job. It was the first time I had ever been part of a team where everyone had been told so clearly to park their egos. Looking around, I could see that the other guys took the message as seriously as I did.
I also recognized that managing my blood sugar was going to be more important than ever during the tournament. Luckily, I had a familiar face to help me out. The trainer with Team Ontario was Dr. Johanna Carlo, or Dr. Jo, as I called her. She was also the trainer for the Don Mills Flyers, so she knew all about my diabetes and how I should be handling it.
Each night, Dr. Jo set an alarm so she could wake up and check my blood sugar levels. Like clockwork, Dr. Jo would come into the room at three a.m. and wake me. My roommate was Darnell Nurse, and he never complained once about the disruption. We never talked about it, but I was always so thankful that he never made a big deal out of this—it helped me stay calm and meant I never felt like I had to hide anything.
Dr. Jo was a great trainer, but she’d only ever seen me at the rink. Now she was with us twenty-four hours a day for the tournament, and some of my methods for staying balanced came as a bit of a shock to her.
One night, Dr. Jo checked my levels on the glucose meter and frowned.
“Max, you’re really low,” she said. “I’m a little concerned about this.”
“It’s all good, Dr. Jo,” I said. I reached to my bedside table, grabbed a package of Swedish Berries, and started devouring the candy. Dr. Jo seemed surprised—it wasn’t the most scientific solution, but when we checked my blood su
gar a little while later, I was fine.
Candy couldn’t solve the problem every time, though. A few nights later, my blood sugar was low again, but this time it was stubborn. No matter what I tried, my blood sugar wasn’t coming up. We had a game the next day, so I couldn’t afford to stay low. After an extended period of time, Dr. Jo was starting to get worried.
“I’m sorry, Dr. Jo,” I said. “I must have given myself too much insulin.”
“It’s all right, Max,” she said. “But I think it’s time we called your mom.”
“No, please don’t,” I said. It wasn’t anything against my mom—at that age, I just didn’t want help from anyone. “I’ll be fine. My levels will come up.”
“You don’t know that, Max. We have to be safe.”
I kept trying to negotiate, but Dr. Jo wasn’t having it. She texted my mom, and the next thing I knew, my mom was running over from her hotel in the middle of the night with toast and peanut butter for me. My mom had come prepared—her hotel room was stocked with snacks and foods just for me. There weren’t as many gluten-free options readily available back then, so she’d even brought a pasta maker and griddle in case she needed to make gluten-free meals for me.
In the end, I was thankful that Dr. Jo contacted my mom. With her help, we managed to get my blood sugar levels back to normal, and I was able to play the next day.
While my mom was very involved, she was also good about staying out of my way—that’s why she was staying in a different hotel than me. She didn’t want me to feel that there was a parent always hovering over me wherever I went. She knew I was a normal teenager—I was stubborn, and I didn’t want to listen to anyone. And I was extremely hotheaded when it came to people telling me what to do. I wanted to do whatever I wanted to.