No Days Off

by Max Domi

  “Your blood sugar is very high, Max,” he said. “It looks like you might have type 1 diabetes.”

  My mom and I looked at each other. For her, time stood still for a second as our entire future as a family shifted. But I had no clue what the diagnosis meant. So I said the first thing that came to mind.

  “Can I still play hockey?”

  Dr. Strachan’s face broke into a wide smile.

  “Of course you can! Do you know who Bobby Clarke is?” he asked. I gave him a blank look. “He was one of the hardest-nosed players to ever play the game. And he has diabetes. If he could play in the NHL with type 1 diabetes back in those days, you can do it now.”

  I was relieved—my dream of playing in the NHL was still alive. Good, I thought. That’s the end of it. Little did I know, there was a long road ahead.

  “Right now, though, you need to head over to SickKids Hospital,” Dr. Strachan said. “I’ve called them and set up everything for you. You need to head there now.”

  “Why do we have to go now? Can’t we wait a little bit?” I asked. Up to that point, visits to the doctor had been straightforward—they found out what you were sick with, gave you some meds, you went home, and you got better. Going to the hospital made this diabetes thing sound more serious than I wanted it to be.

  “I’m afraid not,” he said gently. “You and your family need to talk with the doctors there as soon as possible.”

  “I know it’s scary, Max, but everything’s going to be all right,” my mom said.

  I was scared, but it wasn’t because of the diabetes. Going to the hospital meant getting tests, and getting tests meant needles. And I hated needles. They were my biggest phobia—a fear I shared with my dad. I once tried to skip school just so I could avoid having a flu shot.

  I knew I didn’t have a choice, so we left Dr. Strachan’s office and drove immediately to SickKids. On the way over, my mom called my dad and told him about the diagnosis. After a couple of minutes she handed the phone to me.

  “Your dad wants to talk to you,” she said.

  “Dad, who’s Bobby Clarke?” I asked.

  My dad started laughing. “Bobby Clarke was one of my favorite players growing up. He was the captain of the Philadelphia Flyers. He has diabetes, but he’s tough, he could score—he did everything.”

  “Dr. Strachan says I can still play hockey.”

  “Of course you can.”

  I passed the phone back to my mom and looked out the window. As we pulled into the hospital parking lot, I told myself that my parents were right—nothing would stop me. I would get through this.

  The second we arrived at SickKids, my life as a person with type 1 diabetes officially began. For the next week or so, I was at the hospital every single day. We arrived at seven a.m. each day, bracing ourselves for the long, grueling series of tests and meetings that would follow—not an easy introduction to living life as a person with type 1 diabetes.

  I started by seeing a specialist named Dr. Pearlman. He was a short, older guy with gray hair, and he was the head of a team of doctors, nurses, and dieticians who would be with me each day for the endless laundry list of tests, needles, and classroom training sessions. Every day in the hospital was like an extreme hockey practice—drill after drill, each one focusing on a different skill with a different expert.

  Dr. Pearlman and his team started right from the beginning and explained what exactly the disease was. The amount of information we were trying to take in was overwhelming. I’d learn about one thing, like how to use a glucose meter—the device that tests my blood sugar level—but before the lesson had sunk in, I’d be off to the next meeting, where we’d cover something entirely different, like how insulin injections worked.

  The specialists’ main goal was to teach me how insulin worked in my body. I had never even heard of insulin before I was diagnosed, so I didn’t have a clue what it was supposed to do. I could barely make sense of the medical talk going on around me, but the specialists broke it down for me.

  “In simple terms,” Dr. Pearlman told me, “insulin is a hormone that your pancreas produces.” He gestured to the top of his abdomen to show me roughly where the pancreas was. “Insulin helps your body use sugar from the food that you eat. It helps your body absorb or use glucose for energy. But in type 1 diabetes, the body can’t produce enough of its own insulin, so your body cannot use the glucose in the food you eat. Without insulin, your sugar levels could build up in your blood, which could be very dangerous. So you have to give yourself insulin every day—including every time you eat and before you go to bed—to keep yourself safe.”

  My point person at SickKids in those early days was a nurse named Ana. She ran the ship, and she gave me a handbook full of exercises that would help my parents and me manage everything that I ate. Ana also worked closely with my dietician, Anita, who made sure that I understood just how crucial it was to eat the right food and be aware of what I was putting into my body and what it might do.

  “It will be important to learn Max’s insulin-to-carbohydrate ratio. And you’ll have to count his carbs carefully,” Anita told my parents. “Max should eat a healthy diet just like everyone else. The difference is that he needs to make sure he calculates what he is eating and then gives himself the appropriate amount of insulin that he requires.”

  “Mom, what’s a carbohydrate?” I asked. I knew that foods like bread and pasta had something mysterious called “carbs” in them, but I didn’t know what they were exactly, and I had no clue you could count them.

  After reading the handbook, I had to pass a number of tests. For the first one, I was given a plate full of fake food—a banana, some bread, and mashed potatoes. I had to count the carbs on the plate, and then figure out the right amount of insulin I would need to give myself with that food.

  “What if I’m at a birthday party? Can I have cake?” I asked.

  “Of course,” Ana told me. “You’re like everyone else.”

  “There’s nothing that you can’t eat,” Anita added. “You just have to do everything in moderation.”

  Ana and Anita, along with the rest of the team at SickKids, emphasized that message a lot—they made it clear that it was important that I continue my life as normally as possible. Although my life was now different, I was still allowed to be a kid and eat cake and other good things. The dietician put it simply for my parents: “You wouldn’t let your other children eat candy or cake constantly, so neither should Max.”

  Learning about carb-counting was one thing, but even with the most careful counting, there was always the chance that something could go wrong. The next step, then, was for me to learn about the danger signs and what to look for if, as the doctors called it, I “went low.”

  “You might feel shaky, weak, or sweaty,” the doctor said. “If it gets worse, you could find your speech slurring or your vision blurring.”

  That doesn’t sound so bad, I thought.

  “It’s important you pay attention to those warning signs, Max,” the doctor continued. “If you don’t and your blood sugar keeps dropping, you could pass out and potentially even have a seizure. Worst case scenario, you could go into a diabetic coma and die. I don’t want to scare you, but you have to know the risks. It also means you should have simple sugar—like juice—with you so that you can treat your lows before they get serious.”

  That news hit me hard. A week before, all I’d worried about was whether we’d win our next game. Now the doctors were telling me I was living with a potentially deadly disease. As the seriousness of my type 1 diabetes sank in, all I could wonder was, Why me?

  In between all of these educational sessions, the doctors were constantly doing blood work to monitor my blood sugar. Short term, I had to pay attention to the risks of high and low blood sugar levels. If I didn’t, there were potential long-term dangers, like eye, kidney, and nerve damage. All of those were preventable if I maintained normal blood sugar levels, though, so the doctors reinforced how important it w
as that I monitor my blood sugar levels regularly. For a little while it just seemed like an interruption, as though this were a onetime sickness that would pass. But after a few days, the reality sank in—I would be testing my blood and giving myself insulin every day for the rest of my life. This wasn’t an interruption, this was my new normal.

  We spent our downtime between meetings in a tiny waiting room near the doctors’ offices. One day we were hanging out waiting for some test results to come back. We had TSN on the TV in the background, and a feature story came on. I wasn’t paying much attention, but suddenly my dad said, “Check it out—it’s Bobby Clarke!”

  I knew from what my parents and Dr. Strachan had said that Bobby Clarke was a big deal, but I didn’t realize until that moment that he was a legend in the NHL. The opening montage included a clip of Clarke raising the Stanley Cup, smiling with no front teeth and long hair. They showed a montage of his best goals and hits. He’s tough as nails, I thought. It reminded me that, although things weren’t easy, I could get through it.

  After several days of intense training and studying with the team at SickKids, my family and I were sent on our way. I was completely drained, physically and emotionally. The doctors and specialists at SickKids had taught us so much about the disease. But everyone reacts differently to type 1 diabetes, so it’s like anything in life—you can only really learn by experiencing it.

  We came home with our arms full of charts, including carb-counting posters and warning charts that displayed the crucial symptoms of low and high blood sugar levels. During those first few days when we came back home, everyone was in a bit of a fog as we tried to figure out how I would live life as a person with diabetes outside the hospital.

  My sisters, mom, and I had moved to a new house not long before I was diagnosed. The week before I had gone to the camp in Michigan, a woman had come to our door with her two young kids. Mrs. Suzanne Ross introduced herself as our neighbor across the street. She said they were collecting donations for the Juvenile Diabetes Research Foundation (JDRF), and she introduced her two boys, Noah and Jamie, who both had type 1 diabetes. My mom donated some money to the foundation, and she paused, as the idea of how difficult it must be having kids with diabetes registered with her.

  A week later, on one of the mornings when we were about to head to SickKids, my mom ran into Mrs. Ross’s husband.

  “Sorry, we’ve only met briefly,” my mom said. “But you’re Noah and Jamie’s dad, right?”

  “Yes. I’m Larry,” he said.

  “I met your wife recently while she was collecting sponsorships for the upcoming JDRF walk,” my mom said. “You aren’t going to believe this, but Max was just diagnosed with type 1 diabetes.”

  For a moment there was silence, and then Mr. Ross gave my mom a hug. They may have been newly acquainted, but suddenly they shared an undeniable bond as parents of a child living with type 1 diabetes.

  “It’s hard to describe what you’re in for,” he said quietly, “but we are here to help you.”

  Mr. and Mrs. Ross promised to share whatever information they had about living with the disease. It meant the world to my family to know that we had friends like that we could rely on.

  While the team at SickKids had been so helpful and given us the essential information about living with type 1 diabetes, there was still so much to learn that was individual to my body alone. By talking with people like our neighbors and experimenting day by day, my family and I were able to slowly learn how my body worked and what “my” diabetes looked like. There are many aspects of living with diabetes that doctors can’t prepare you for—you just have to experience them. Every person’s body is different and so is every person’s lifestyle, so there’s no exact “how to guide” in managing the disease.

  My body changed quickly in the weeks following my diagnosis. Now that my family knew what was wrong with me and how to deal with it, I started to gain back my weight. Every time I tested my blood, I appeared to be fairly stable. More than once we said to each other, “We’ve finally got the hang of this.” It seemed that things wouldn’t be so bad after all.

  The team of specialists at SickKids had warned us this might happen. After a diabetes diagnosis, most people go through what’s called a “Honeymoon Phase.” In simple terms, it’s the period after a diagnosis when your body is still producing a small amount of insulin and you need to take fewer insulin shots. Unfortunately, it doesn’t last forever. We’d been warned that we would all know when I was coming out of that phase. And when that happened, things sure changed.

  Once you experience what it is like for your blood sugar to go low, you realize just how dangerous it is. When I go low, it brings out the worst in me. I get very cutthroat and mean. It can get so bad that I don’t want to talk to or see anyone. I also get incredibly hungry when I’m low. In a lot of ways, going low is the same sensation as if you’re really drunk. You wobble around like you don’t really know where you are, and you have fuzzy vision. Your anxiety can go through the roof, too. Sometimes I’ll be in such a haze that I’ll catch myself staring at an object for ten minutes straight.

  Going high wasn’t any better. When my blood sugar levels spike, my palms and feet immediately get sweaty. My head starts pounding, and I’m constantly thirsty, even though, at the same time, I also constantly have to pee. I don’t feel loopy like I do when I go low, but I still get irritable and snap at anyone around me.

  When I was first learning how to recognize all these symptoms, I was afraid of going high or low—it all seemed so far out of my control. But it was so much worse for my family, who had to deal with my nasty moods. The problem with diabetes is that there is no tried-and-true mathematical formula for telling you the exact right thing to do in every situation. For example, if I was low one day and had a juice box with 15g of carbs, fifteen minutes later, I would be fine. But the next day, if I was low again, that same juice box might not be enough. Lucky for me and my family, I could usually tell when something wasn’t right. But my mom wasn’t taking any chances.

  Each night, my mom would set her alarm for three a.m. so that she could test my blood. It didn’t matter how tired she was or how much else she might have done for me and my sisters that day—she was always there, looking out for me and making sure my blood sugar hadn’t dropped in the middle of the night. I was just entering my teens, so most times, when my mom woke me up, I’d grumble, “Mom, leave me alone. I just want to sleep!” But it never stopped her from making sure I was safe. My mom is a special person.

  Toward the end of the school year in 2007, my class was scheduled to go on a big field trip north of the city. It was going to involve a long bike ride and a short flight in a small plane—we were going to study mapping as part of our geography class. It seemed like a cool way to learn to me, and I was excited for the unique experience. But my dad really didn’t want me going on the field trip. He was worried it was too soon after my diagnosis for me to be going away like that.

  My mom worked at convincing my dad.

  “He has to be able to do the same things as other kids,” she said. “We can’t smother him in bubble wrap or have him feel afraid.”

  My dad eventually agreed. But there was a catch—my mom insisted that she come along to make sure nothing went wrong.

  The school drove us all in a bus to Norval, where we rode our bicycles along country roads for what seemed like forever. When we finally got to our destination, we would board a small Cessna plane that would fly over the countryside so we could study the lakes and forests.

  As we biked, I felt myself getting more and more tired. It wasn’t a difficult ride, so I knew it wasn’t a question of fitness—it was my diabetes. I refused to stop, though. I didn’t want to make a scene or be the reason everyone had to pull over. So I cracked open one of the many juice boxes I had with me and kept pedaling. The farther we went, the harder it became to keep my focus. I was getting antsy and was just about to snap when finally our destination came into sight.
/>
  As I put my bike away, I felt a glimmer of hope through my sour mood. It was the first time I’d gone low while exercising, and I’d made it through.

  My mom was the only parent on the trip, but she did a great job of hanging in the background. She waited at all the check-in stops along the bike ride, just in case I needed anything. She was like a ninja—nobody even knew she was there.

  I was still a typical kid, trying to pretend that I didn’t need my parents for everything, but the truth was that I was so relieved to know that my mom and dad were there for me like that. And it wasn’t just my parents who helped me—my sisters were also a huge help. Looking back, I’m so thankful for everything my sisters Carlin and Avery did for me over the years. Both of them were living their lives and trying to reach their own goals. But even while they were doing their own thing, they were patient and compassionate as we figured out how to manage everything. I don’t know where I would be without my sisters.

  That whole summer of 2007, I was under a microscope. Somebody was always watching over me. But I was still playing soccer and hockey, and as a family we did all of the things we would normally do—day trips in the city, barbecues, visits with friends. I never wanted to miss any sports, and to their credit, my parents never told me that I couldn’t play or that I had to stay back from anything. I knew my parents were stressed, but we sat down one day and had a serious conversation about what they needed from me.

  “Max, we want you to be able to do all the things that your friends and any other twelve-year-old would do,” my dad said.

  “But if you’re going to do that,” my mom said, “you have to be smart and always be prepared. You need to always have your glucose meter with you, as well as juice and snacks in case you need to treat low blood sugar.”