“Do you want some…oh wait sorry.” He pulled the bag of candy away, realizing his error and looking embarrassed. I hated that he felt that way. I hated I was the reason he felt that way. “No it’s fine, I’m not hungry anyway.” I lied. Trying to relieve the pain I felt inside. He poured himself a cup of Mountain Dew and sprinkled a handful of Runts into his palm. He sat awkwardly listening to the conversation the majority of the table, looking away from me. He said nothing to me the rest of the night.
Years later I sat on a bus next to my best friend. Post graduation I had been asked by her to come with her on the last field trip of her college career. She hadn’t spent much time in Chicago, and since I had schooled there for a while she had imagined I wouldn’t mind heading back for a day trip. We had stopped at a McDonalds at a gas station just before Milwaukee. She and I had been in our seats for about 10 minutes as students filled the bus with the scent of fries and grease.
I had forgone the meal for a bottle of water. I wasn’t very hungry. Bus rides usually didn’t give me much of an appetite, not because I was car sick, but because I would get so excited that I couldn’t think of anything else. Besides that, one student had brought her young son, who had managed to throw up right behind us, which didn’t help much either. As I sipped my water one female student had entered the bus and loudly exclaimed “Man, it smells like diabetes in here!” My heart jumped into my throat as I caught my best friend glancing sharply at the girl and then sympathetically at me. I looked at her with a smirk on my face and mouthed “I’m used to it. It’s okay.” We didn’t speak of it the rest of the trip. My heart ached inside. I’m sure she knew.
The 5th had been the mark of 15 years diagnosed. A long time when I think back to that day. My mother had been in denial so long that it was hard for her to finally convince herself that taking my blood sugar was the right thing for her to do. She was also a diabetic, and worried about my sudden weight loss and heavy water consumption over the past few months. At 1am she woke me up from bed saying “Emily, the doctor wants us to meet us at the hospital.” By 5am I was in Milwaukee Children’s Hospital getting needles shoved into every inch of skin I had, and having every doctor and med student in my room all night long.
By the next day I became aware of my mortality. Mainly because a doctor came in to tell me that if I didn’t take shots every day, five times a day I was going to die. I was eight. That was heavy. I had determined I was never going to be normal again, and I didn’t know what hurt more, being diabetic or being alive. When I left the hospital I told my mother I felt like a pin cushion. By the end of my first week home I realized I would always feel that way.
Whenever someone asks me if it hurts when I change my insulin pump I want to tell them no. Usually I do. Only because I want to look stronger than I feel. They usually answer the question themselves by quickly saying “I suppose you get used to it.” I often nod and make a joke about the “do or die” philosophy so many doctors has told me to obtain when they realized I was afraid of needles. But it isn’t funny when it’s your reality.
What I actually want to tell them is that it doesn’t hurt the way they think it would. After years of being made fun of by other kids, being heckled out of the sports I wanted to play, and being told I wasn’t taking good care of myself by multiple doctors when I had done everything they told me to do, you don’t get used to it. I had determined that I wasn’t going to ever feel normal again. I kept saying it because I had to keep reminding myself that I wasn’t. That I was always going to be made fun of. That it was always going to hurt. That I would never get used to piercing my skin with foreign bodies, just so I could survive. By the middle of my high school career, I had determined that I was just a medical bill, and began wondering if it was really worth the expense of keeping alive.
Facing adulthood and the uncertainty of my future….I still wonder that. After 15 years of fighting an identity in my illness, I feel like it would just be so easy to stop taking blood sugars and insulin. Some days I do. Just to remember what it feels like to live needle free. It’s short lived though. Fear keeps me going. Fear that I’d let my disease win. Fear that I might miss the cure. Fear that I might be worth more than the dollar amount society put on me and never realize it.
At 23 years old, adults still make diabetes jokes. It’s painful every single time. Not one of them is actually all that funny to me, because it isn’t funny. It’s awful. It’s scary. Depending on a battery and synthetic materials to keep myself alive is scary. It’s even worse because they can’t see it. They can’t see I have it because I look normal. They can’t see my limitations so when I admit them they think I’m faking it…or wonder why I’m not “fat like the other diabetics.” I can’t be mad at their ignorance. The media doesn’t help much either. So I keep silent when I can and take the ridicule. It’s easier to be unhappy than vulnerable. I guess I just cope weirdly with stuff.
That was an emotionally exhausting post to write. I guess that’s what therapy ought to do though. Must be working.