I was 10 years old when I got diagnosed with diabetes. I vividly remember sitting in the doctor’s office, hearing the word diabetes, and crying despite not knowing what it meant. It sounded a lot like cooties. Which was real bad.
About eight days into my two week stay at the hospital my best friend moved to Arizona. I stood in the hospital’s front lawn wearing shorts underneath my gown, IV inlets hanging from my arms, and waved goodbye as he and his family drove away. I cried again. Because now, not only had I just been diagnosed with a disease that was incurable and deadly, something I was certain would make me a freak at school, but my one sure-thing friend just left me. That’s a lot of change to process.
Every night during that hospital stay they’d wake me up on the hour every hour to draw blood. The graveyard shift of nurses at Mercy Hospital in little Tiffin, Ohio weren’t the best and brightest. And often it took repeated tries to get the needle into the correct part of my arm. It was like living a torture horror movie. I’d wake up delirious, everything was foggy and confusing, and a woman would stab me in the arm a bunch. I’d wail/cry and then fall back asleep only to wake up and do it seven more times before breakfast.
Every night during that hospital stay my doctor would warn me of all the horrible things that diabetes can cause. He promised that if I didn’t control my blood sugar I would go blind, my feet would have to be amputated, my kidneys would fail and my heart would eventually get ruined. I know he had good intentions. But he scared the absolute shit out of me. It was black and white. High blood sugar = pain and death.
From that point on my life has been all about avoiding high blood sugar.
The morning we got out of the hospital I went home and rode my ten-speed Schwinn around the block over and over. I was Greg LeMond racing from death. Until I almost passed out. I went inside my house, tested my blood sugar and I was 32. Normal is 90-120. I knew that was low and I desperately needed food. But I wasn’t high. And that felt good. Safe.
It wasn’t. And 25 years later I still do (and feel) the same things. Whenever my blood sugar is high I panic. But not in my logical grown up brain. The 10 year old in me panics that my feet are going to fall off. So I take a bunch of insulin or go exercise a bunch to bring it down. Then I crash out. Low blood sugar can lead to seizures (which I’ve had). But usually it just leads to mass confusion and non-functionality in the moment. Which is bad when you’re driving, or in an important meeting, or out with friends, or playing with your kids, or literally every real-world scenario there is. So then I have to eat a bunch of food to bring my sugar back up. My brain thinks it’s dying (honestly, it’s science) so it triggers me to eat WAY too much. Which causes me to go high which then freaks me out again and the roller coaster continues.
Mind you, I logically know this is stupid. And I logically know how to get off the roller coaster. But that black and white, 25-year-old scar has put me in real danger too many times to count. I hate that this is true, but irrational fear from the past haunts my day to day life.
I talked about all this with my doctor recently, and it made me think about my kids. I realized in a new way that over the next decade, things will be said to them that will get lodged in their brains and have a lifetime of consequences. I’m not quite sure what to do with that realization. But I’m now a little more aware of the fertile ground orbiting around me than I was yesterday. And for now, that awareness feels like a good start.
I’d write more but I have to go check my blood sugar.
Photo (Flickr CC) by Stephanie Sicore