When I was first learning to count carbohydrates, I lugged a small but hefty CALORIE KING book with me everywhere I went, shoved haphazardly into my hot pink corduroy shoulder bag. The words in this book, crammed with thousands of foods and every element of their nutrition, were impossibly small to read, and made more impossible by my fluctuating eyesight as it adjusted to healthier blood sugar levels. Those first few weeks after diagnosis, which were also the few weeks before my freshman year of high school began, I wore reading glasses with thick frames from The Dollar Tree. I put them on to calculate the content of my food, and to finish my required summer reading.
Diabetes be darned, I read Grapes of Wrath in its entirety.
Once school began, I ate the same things, at the same times, every single day. My mom packed me a brown paper bag—structured lunch boxes were so not cool at this point—and a sticky note with the carb count of everything it contained.
Turkey sandwich with mayo: 26. String cheese: 0. Fruit leather: 12.
I wasn’t allowed to carry my glucose meter with me, or my insulin, and continuous glucose monitors either didn’t exist yet or I didn’t have one, so for all of my diabetes needs, I had to go to the nurse’s office. Thinking back on it, this enrages me. So many days I sat in class, full of anxiety, wondering what my blood sugar was, but unable to check it, and not wanting to leave class, walk across the entire school so often to find out.
Each day, I left class a few minutes early, before lunch, to test my blood sugar, and left lunch a few minutes early to inject. I carried a permanent hall pass for my health. Within a few weeks, all of the security guards knew me. The blonde girl going to the nurse’s office.
That first year after diagnosis, my A1C was 5.5. That structure worked for me, that repetition of food, always knowing exactly what and how much was going into my mouth. We weighed everything on the kitchen scale, scooped piles of food into measuring cups. No spoonful unaccounted.
Slowly, as the years went by, as I became more comfortable with diabetes, and as I became an increasingly restless teenager, my A1C creeped up. 6.1. 6.5. 7.4. I now believe the amount of time spent with in-range blood sugar is a much better measurement than an A1C, but still: it reflected something. A loosening of the reigns. A letting go. By 16, I’d stopped living with my mom, who of course had stopped packing my lunch, and I was eyeballing the serving size of cafeteria french fries, often the entirety of my meal as a vegetarian. I snuck my insulin in my purse and injected at the table. I skipped visits to the nurse’s office. I skipped meals. I skipped classes. I thought I was taking agency over my teenage life, interrupted by illness.
Diabetes doesn’t control me! I wrote to no one, to myself. I can do what I want!
It’s taken me many years to accept that there are forces beyond our own sense of agency that imprint upon our lives. It sounds obvious, doesn’t it? But the ways I’ve tried to claw out of own body, the loopholes I’ve sought and failed to find, the deep, dark rabbit holes I’ve fallen down only to find myself broken, right back where I began, tell me that it is not a truth so easily swallowed, at least not for me.
When handed the heavy stone of diagnosis, of a life irrevocably altered, agency also requires surrender, and surrender is not something we do just once. It is bound by every day action.
These days, I calibrate my Dexcom when it asks me. I show up to my endocrinologist appointments. I’m seeing a Certified Diabetes Educator for the first time since I was in the hospital upon diagnosis, twelve years ago. A few months ago, I bought a food scale, round and red, near weightless itself. It sits on my kitchen counter like an apple waiting to be picked. Waiting to help me feed myself with the exactness my body craves.
This is the groundwork of growth. This is what it means to accept responsibility for my own life, all of its weight, all of its potential. There are choices I don’t have, but this one—this attention, this care—I do. And so, finally, I choose.