I’m sorry. I wish there was something else I could do. This is the typical response that I give whenever I was asked to participate in the walk for juvenile diabetes. Yes the JDRF or Juvenile Diabetes Research Foundation always did a walk to help raise money and awareness. Funny thing is whenever I mention this to anyone I am confronted with confused faces. No one has ever heard of this? It was the biggest event in the Northeast for diabetes research. They ended up with a pretty billion dollars to give to research. Really? No one has heard about this? Well regardless I have type one diabetes and a friend of mine also has type one diabetes. This is worse than type two you understand so my friend Jabari and I had to prick our fingers and take our infusions more than thirteen times a day. I take my infusions from an insulin pump and Jabari takes his from an insulin pen. Ya know there was this one time we were walking to the pharmacy to pick up his prescription or we just waiting for the bus talking about his prescription? No, no we were walking. As we walked we talked about the walk to cure diabetes.

“Jared,” he said. “Did you ever want to walk?”

“Don’t know,” I said. “I hated the thought of getting hot.”

“What do you mean?” he asked.

“I remember I wanted to help,” I said. “My mom told me I needed to help out the cause I got type one when I was five. She said that was when Aladdin came out.”

“No kidding,” he said.

“Yeah no kidding,” I said. “I think I saw Aladdin on VHS before heading to the event. I remember craft service tables pilled high with towers of juice boxes and coolers filled with water bottles. I can’t quite remember if everything was decked up and down in white table clothes speckled with the image of multiple multi-colored shoes walking together.”

“Oh so you were ACTUALLY dragged to the walk,” he said.

“Yeah I was,” I said. “I thought I said that.”

“But you didn’t like it,” he said.

“I hated it,” I said. “I hated the people coming up to shake my hand telling me how sorry they are and how brave I am for walking today. I really fucking hated that because I think I was eight years old, and well, I was being told that I needed to do this for fellow diabetics that I had never met. I was always a controlled diabetic ya know, so I never thought I needed to care about someone else.”

“Wow that’s kind of selfish,” Jabari said.

“Yeah I guess it was,” I said. “I just didn’t think my disease should define me ya know? Even back then I wanted to be a normal kid that didn’t have to walk for hours in an Indian summer sun. It was the biggest event in JDRF history; it was certainly the biggest event in Connecticut, so I figured they’d get along fine without me. It is funny how no one remembers the walk except us huh?”

Our conversation ended after that with him jokingly calling us diabetic hipsters and I not liking the joke. I walked to the other side of the street for the rest of the way to the pharmacy. I didn’t like thinking my eight-year-old rationale was wrong or even worse, pretentious. Maybe this is all bullshit though. Perhaps my memory is as shattered as an insulin bottle with too much empty space. Maybe if the wasn’t a talker like me it wouldn’t be filled with so much hot air. Maybe that’s why I always managed to break the insulin bottles when I was younger. Maybe that’s why my parents wanted to keep an eye on me.

Speaking of my folks I do remember them of course. I always said sorry to them. I said sorry when I missed a blood sugar test and sorry when I turned down a new form of research in New Haven. The research in question was to see how long I could go without an insulin transfusion. They wanted to take me off site i.e. rip out my insulin pump and see just how long it took for me to get high or low when I had no insulin flowing through my veins. I hated the idea immediately but bare in mind this was after stem cell research became the hot button issue in the north. No one wanted to touch it so I was underhandedly and bold facedly told by my doctor Dr. Tamborlane that after the push back against said stem cells; research teams were essentially throwing shit at the wall until something stuck. Tamborlane told me he wanted a Band-Aid to the autoimmune mutation that reduced the pancreas to a piece of dead flaking waste. Tamborlane thought this would work. He thought it would give him valuable data on how diabetics naturally regulate themselves. I thought this man wanted to separate me from my life’s blood. I thought fuck’em.

“But you’ll be fine,” Tamborlane said.

“But I don’t care,” I said. “I don’t want to make myself high.”

“No one does,” Tamborlane said.

“How do you mean?” I asked.

“No one seems to care about how our research has been crippled,” he said.

“I want to care,” I told him.

“Then why won’t you help us?” he asked.

I looked at him for a second. His face was hard to see under all those lines and creases and stray strands of white hair getting caught in his bushy eyebrows. He was a charming man and I loved to talk with him because I got him frustrated. He wanted to be a social justice warrior and please his parents all at the same time. He wanted to fight for what he believed in, but he wanted to do right by them as well. Believe me I got it. I said nothing though, but I knew what I wanted to say to him:

“Doctor,” I wanted to say. “I hate the way you have pressured dozens of children into tolerant masses of data. I understand that the cut back to stem cell research has been hard and it is no doubt a cultural and societal challenge that has and will always be talked about. We juvenile diabetics are not you darts however and the hypothetical cure is not your dartboard. This test of taking off our pumps and seeing if we get high or low will not help us and it will not help you. As I speak I am about to leave for college and I hope to meet some new friends when I get to college and I HOPE that folks down in Georgia aren’t looking for a soul to steal but if they are I’ll tell them this. I’m sorry. I’m really sorry. My mind is so scrambled and addled it’s hard to know if I’m the victim or the selfish kid who refuses to walk. Until I can figure that out I’ll ask that you empathize with me as best you can. I’ll endeavor to do the same before you steal my soul my potential Georgian devil."

Seriously though, that mental letter of mine is the truest thing in this story. I didn’t actually have a conversation that serious with Jabari and I think it ended the moment we forgot the lyrics to a song instead of splitting off after Jabari told a bad joke. I also believe that while brief he was in the story Tamborlane was actually a lot more talkative. A smooth talking businessman trying to sell you his miracle research plans to be sure, but still an amazing award winning doctor in his own right. I realize I’m telling instead of showing but honestly, I don’t know if I recognize how serious my disease is yet? I don’t know if has cursed the folks in my life beyond my friends and various doctors? I don’t know if I can actually empathize with fellow diabetics or not; especially those diabetics that Tamborlane successfully tricked into his research programs, or duped into the multicolored sneakers of the walk? I don’t know if I feel bad when there are so many people willing to feel bad for us? I don’t know if I’m being selfish or surly? They still wouldn’t have a cure if I walked but maybe I would feel better if I did? I always ask myself these questions and I’m always hit with the same answer. I didn’t walk so how would I know?

© 2014 Jared "I.J" Steinberg. All Rights Reserved.

#nonfiction