Meet my Monster

Meet my monster, the manifestation of all my conditions.

He’s cute, isn’t he?

Looks can be deceiving.

Birth of a Monster

My monster was born in a Ft. Wayne, Indiana Intensive Care Unit when I was almost six years old. I had just regained consciousness after three days in a coma. I was catheterized and couldn’t figure out why. He grew terrifying instantly, in about the time it took me to realize that my bladder, along with my neck and the entire left side of my body, was paralyzed. I had contracted bacterial streptococcal meningitis.

My monster gorged itself on the fear, pain, self-consciousness, and uncertainty of the next year and a half, while I struggled with being so different from everyone else I knew, not just the kids. I couldn’t walk, feed myself, or use the bathroom by myself. I might have drowned in these feelings, but my mother pushed and pushed for me to do what it took to recover. She pushed until I hated her. That was when I discovered anger.

Anger can be a useful tool – the right kind of anger. This kind was accompanied by determination. One snowy day, my mother was in her bedroom, taking a well-deserved break from me and talking to her best friend on the phone. I rang the bell I’d been given (never give a six-year-old a bell). Nothing was wrong, I just wanted attention. I rang it and rang it and rang it. She ignored me. I got so angry then that I rolled myself off the couch and pulled myself into her room with my arms. It was the first time I had traveled an inch by myself in a year. And it was the first time my monster shrank a little.

After that, my progress was gradual, but my monster was unpredictable. When I was reading, I looked like a normal kid, and he was quiet and small(ish). I read a lot. But when I started walking again, pushing an empty wheelchair or toddling while my mom held me up by my belt loops, strangers would stare. I would shrink and my monster would grow scary again. My family saved me. They wouldn’t let me backslide. Progress gave me the strength to ignore my monster and I finally caught up with the functionality of other kids my age.

My monster went on vacation then, for about eight years. He wasn’t as scary. He wore a hat and carried a suitcase. Oh, he came back sometimes, just to make sure I knew he was still there, like when I got strep throat so often I could diagnose it myself (side effect of b strep meningitis), or when my best friend didn’t want to be friends anymore because I had to repeat a grade.

The Teenage Years

He came back for good when I was 14. I had been falling asleep in class after 14 hours of sleep, drinking 20 glasses of water a day, and consuming 5000 calories, sometimes leftovers intended for the whole family’s dinner. Did I mention I weighed about 90 pounds? I was thrilled I could fit into the newly introduced size 0. When I told my mom I was too tired to go to school, she said, “Not in my house, you’re not.”

My monster showed up about a week later when I was admitted to the hospital, newly diagnosed with Type I diabetes. He wasn’t that big or scary at first, but I wasn’t happy that he was there. He stayed pretty quiet for the first six months, just hanging out and reading under the bed.

Then it started to get to me. The constant blood sugar testing I could deal with, but there were other things. The only pediatric endocrinologist (kid diabetes doctor) available used to send me out of the room to discuss my treatment with my parents. (Big no-no with my health history. If I was giving myself injections, I could damn well be in that room.) They used scare tactics, stories about other kids who were non-compliant who died before they were 20. (Have you ever met a teenager who responded well to threats?). This was when I discovered the bad kind of anger, the self-destructive kind.

The straw that broke me was that they refused to take me off a 2500 calorie diet. I gained 60 pounds in six months, and my monster roared. I associated insulin with weight gain, and as sensitive as any other 14-year-old girl, I stopped doing what I was told. (There is a form of bulimia that sometimes accompanies Type I diabetes. Eat what you want, don’t take enough insulin, and pee it out instead of absorbing it. It’s like starving yourself while you eat what you want. I read once that the effects of that are similar to shoving an entire turkey down your garbage disposal every day. For six years.)

My monster was back, feeding on fear, rebellion, and bad anger. I averaged 40 days a year out of school, and my mom and I would have fights where she yelled about why was I killing myself. Of course, I was 16 and had no concept that I was shaving years off my life. It was only when I started to develop complications that I was scared straight. I was losing the ability to see (retinopathy) and the ability to walk (peripheral neuropathy). Again. All that work I did in the last round would have been for nothing.

That was enough to drag me out of it. Wrestling my monster into submission once again, I had laser surgery on my eyes, and started taking medication for the pain in my legs, and eventually both complications settled down.

Life As A Grownup

The thing about diabetes is that correcting bad habits isn’t enough. They never really die. They come back to bite you in the butt when you least expect it. This time I had about nine years of relative quiet. My monster didn’t go away, though. He took up permanent residence in my apartment – lurking under the bed or in the closet.

He showed his face in public again when I was 29. That was the year I was officially diagnosed with chronic kidney disease. I was already at stage 3, which usually means a slow decline to kidney failure and transplant. That was the first time I actually feared for my life. And the worst part? Knowing that I had done this to myself. That day, my monster sat down and cried with me.

My monster and I became reluctant partners after that. He doesn’t really act up anymore, just makes mild mischief. You know, all those annoying things that make you roll your eyes but you can't ignore? Like when I need to have blood drawn and somehow all my veins disappear. I know my monster is responsible. I just can't prove it.

What's your monster like? 

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