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TYPE 1 DIABETES, which is the kind that I have (as opposed to the far more common type 2), is an autoimmune disease where the body’s own immune system mistakenly attacks and destroys the insulin-producing cells in a person’s pancreas. As a result, the body is unable to produce enough insulin to regulate glucose (sugar) levels in the blood. It’s unclear what causes the immune system to malfunction in this way, but there is a genetic component (hence my family tree). The only effective treatment for type 1 diabetes is regular doses of insulin to make up for what the body cannot produce on its own combined with careful monitoring of diet and exercise. If you don’t do this, there can be both short- and long-term complications.
I suppose that much of this was explained to me when I was a child, but I don’t really remember learning about the details. What I remember most from that time are the shots.
By the time I was diagnosed, a type of long-lasting insulin had been developed, which meant I only had to have shots twice a day on a set schedule, one before breakfast and another before dinnertime. (That was much different than how things were when my dad was young. My mom remembers him having to test his blood sugar regularly throughout the day and then have at least three shots, depending on the results.) I remember we paid $25 for a vial of insulin. That may not sound like a lot now, especially considering the skyrocketing price of insulin these days, which some estimates put as high as $600 per vial, cartridge, or pen, amounting to more than $1,000 a month without insurance unless a person rations their vials. But it felt like a lot of money even then. Thankfully, Dad had a good job working for Sears, Roebuck and Co., so I never had to worry about not having enough.
The insulin came in vials that were kept in the refrigerator. Mine would be in the fridge right next to Dad’s. They were basically the same except that I had a lower dosage. Back then insulin came from animals, specifically from the pancreases of pigs and cows. Dad and I both took a version that was a combination of both. One was faster acting, and one was slower acting, so together they made for a long-lasting medication.
I remember those details all these years later probably because from a very young age, I was put in charge of giving myself my own shots. The way I remember it, I did so reliably and without a lot of fuss. And I think my mom would even agree. She always said that I was a “perfect child.” I slept through the night as a baby. She was able to toilet train me early. When my younger siblings came along, I would help her look after them even at a very young age. One of my earliest memories, in fact, is of being outside in our front yard with my younger sister Cindy. It was just the two of us, and I remember her crawling toward the street. I ended up sitting on top of her to keep her from getting very far while I yelled for Mom to come outside to help. I don’t think I was even school age at the time. It was always my natural instinct to look out for people, and with five kids, Mom could always use the help.
It’s hard to know what parts of myself developed just because that’s who I am and what parts are because I grew up with diabetes. I know people who identify themselves as chocoholics or having a sweet tooth, for example, but that was never going to be me. Maybe I would have developed a taste for such things if I didn’t have diabetes, but I never got the opportunity, so I’ll never know. Growing up, I wasn’t allowed candy or much in the way of sweets like cake or ice cream. Mom didn’t even keep such things in the house, so I never thought about it much except maybe when she’d give me Fig Newtons. They were the only sweets I was allowed, probably because they’re really not all that sweet. I was allowed five of them, but I would only eat one or two because I hated them. They just didn’t taste like much of a treat. To this day I still hate Fig Newtons.
Instead of having a sweet tooth, I’m a big salad eater. My dad was like that too. His favorite meal was a chef’s salad. Do I really like salad, or have I learned to like it because it’s good for my blood sugar? There’s really no way to tell. Am I a natural caretaker, or did I become one because I had to learn early about the fragility of human life and how to be careful with it? Would I be as resilient a person if I hadn’t grown up with this part of me that I had to figure out, work with, or work around to move forward with my life? Would I know how to pick myself up over and over again and move on with things? Would I be as capable? As flexible? Would I have developed the same sense of humor?
Maybe it doesn’t really matter. We’re all a mix of our genes and our experiences anyway, and diabetes has simply been part of my experience for practically as long as I can remember. Creating a life for myself around my diabetes—or sometimes even in spite of it—is something I’ve always had to do. But I would never call my diabetes a limitation. My dad taught me that. He always told me that I could do anything I wanted to, that I was capable of anything my friends were capable of, as long as I followed the rules of having diabetes. That was how he put it—I just had to “follow the rules” of diabetes.
As I grew older, however, I wondered how much of that he believed for himself, whether or not he felt like the world was wide open to him as someone who lived with diabetes. He was often a rule follower but not always. He was good about monitoring his diet and would eat dinner right at 6 p.m., just like clockwork. He was physically strong and always active, playing tennis and running regularly. All that was good for regulating his blood sugar, but at the same time, he often drank too much, which is not a great habit to have with his condition. And yet, as soon as he got home from work each night, he would fix himself an Early Times bourbon, his favorite value-brand liquor, with just a splash of water. It was his regular habit.
Years later, after my dad passed away, my mother told me that when I got diabetes, he stopped believing in God. He was that heartbroken. He never talked to me about it. He didn’t even talk to her about it at the time. It wasn’t until many years later that he told her how upset he’d been. And yet, even though he rarely talked about diabetes at all, the one message he instilled in me was that I could do whatever I wanted in life if I just followed the rules. Perhaps he didn’t believe it for himself, but he must have believed it for me because the message was hammered home. And looking back on my life now, I think that, most of the time at least, I believed him. I still do.