The Lowdown -
By Gretchen Boger-O’Bryan
Awkward moments of silence. Birthday cupcakes for all the other guests. The friend who convinced others to keep away “or catch diabetes.” Parents heavily involved in talking about meals, snacks and choices.
Indeed, in the nearly four years since diagnosis, the gamut of Maeve’s experiences as a Type 1 diabetic has been wide and the impact deep. Diagnosed at the cusp of teendom, when such leveling up leads to greater independence, long-awaited freedoms and a plethora of experiences sans parents, Maeve’s transition into teen life looked a bit different.
She explains, “I remember finally being old enough to walk downtown with friends and go to the local pizza place. The first time, as we sat around the table waiting for our orders to arrive, I felt like I’d really started to grow up, being there on my own with just my friends. We were laughing, talking and excited to be making plans for the rest of the afternoon -- but then my cell started going off, vibrating in my lap. I tried to ignore it and hoped no one else noticed.”
Turns out Maeve had a good idea who was texting and why. She continues, “When I snuck a peek, sure enough, it was my mom and dad on our family thread. They were waiting for me to let them know what I’d ordered so they could help me do the math to figure out how much insulin I needed. I know they were trying to help, and it was the plan we came up with before I left. It’s just that, once I was there, I wanted to be in the moment like everyone else. No one else had to predict how many slices they would eat, or think about how thin crust would have cut down some carbs; I didn’t want thin crust, no other kids order pizza that way.”
Maeve admits she was so lost in her thoughts -- from feeling frustrated at her parents chiming in to confirm insulin amounts and whether she’d taken it, to realizing just how much her life had changed -- that she hadn’t realized the pizza arrived until her friends’ chatter had died down because everyone was digging in. “I still had to do a blood sugar reading, calculate a correction and bolus for the pizza -- and I was sure they’d be done and waiting for me.”
It was then that Maeve made a decision: She put the phone down, picked up a slice of pizza and decided to deal with it later. She shares, “I wish I could say that was the only time I pushed the thought of my diabetes away, or ignored what I needed to do for my body. It’s not and still isn’t. I feel like I can speak for many T1Ds by saying, ‘Please don’t stare at us, whether it’s our Dexcom, pump, or even injecting ourselves. We don’t need the unwanted attention -- we’re just trying to keep ourselves alive.”
A year after diagnosis, Maeve, then-13, attended Camp Nejeda in her home state of New Jersey just for kids with Type 1 diabetes. “I was nervous. I felt like the new kid and didn’t know anybody or how they did things. After a while, I not only got used to it but made great friends I still have. Actually, the first time I wore my Dexcom on the back of my arm where others could see it was at T1D camp! Everyone there was just living life and wearing theirs and not caring who saw it -- so I didn’t feel ashamed. I wasn’t alone!”
Maeve adds that now she’ll wear it in more noticeable places, even if she’s at the beach or wearing
shorts. In fact, she shares, “One day I saw a dad and his little boy walking on the boardwalk. As I passed them, I just suddenly said hello and pointed out I had a Dexcom, too. I was surprised I did it, but it felt so good to see someone else like me, almost like it was something special -- we had it in common. My mom always calls it, seeing another T1D “in the wild.”
As for the hardest moments now, Maeve says it’s probably when she’s sleeping and her blood sugar
goes low. “The body isn’t meant to be eating or drinking at 3 am. The juice stays on my teeth or piece of bread to hold my level steady for the rest of the night is just sitting in my stomach. When you
already don’t feel well, and you're half-asleep, the idea of those things doesn’t sound good at all. But I
know it’s what will eventually make me feel better. Then, hopefully, I get back to sleep before it’s time to get up for school!”
Stay tuned for next week’s installment of Maeve’s DiaStory, “Damage Control.” Gretchen Boger-O’Bryan is a writer, editor, nonprofit toiler by day and, most important, parent to a T1D, no matter the hour.