Saturday, September 10, 2011

Freedom: How I Beat Diabetes

It is a dream of every 16 year old in America to finally get their drivers license. That little plastic ID signifies freedom: something every kid at that age longs for. Finally, we are able to break free of the ridiculous rules of our parents and we can make our own decisions. It is a huge step toward being an adult and getting to that next portion of life that has been a part of our fantasies and aspirations for at least a year or two.

On my 16th birthday I woke up at least two hours before the DMV even opened and was ready to roll out the door 15 minutes later, despite the fact that it was only a ten-minute drive to the final destination. Eventually we got there and my name went on the waiting list. Soon enough my name was called and then all of the nerves set in. At that point, I was probably a nervous wreck and shaking because I simply could not fail the test. Failing would be the end of me after waiting so long to earn the freedom of driving. It’s all-good though because I passed on my first attempt! When they handed me my brand new license, with the really awkward portrait of myself, I felt like a new man. Life was great! Now I could do what I wanted and no one could stop me. I was ready to take over the world.

As I obtained freedoms from my parents, as I got older, I felt like they were beginning to respect me more and more and I could do whatever I wanted. To me, it meant that I was finally becoming an adult, especially in their eyes.

As I started high school my parents started to give me much more space and freedom when it came to my diabetes management. I was going to have to control myself with no one looking over my shoulder eventually, and what better time than in high school? Unfortunately, that was the time that my control really began to slip. Just like when I got my license a couple years later, I wanted to test the limits. I wanted to see how far and how fast I could go. In a car, that just meant pushing down on the gas pedal a little harder and getting a nice thrill, but for diabetes that meant not testing, not bolusing, not really caring, and consequently, not being in control.

From the time I was diagnosed until the start of high school, I had fantastic control. I even did all of my own finger sticks, all of my shots and site changes and most of the calculations for how much I was eating and how much insulin to take. My parents were always looking over my shoulder though, so I could be quickly corrected if I was doing something wrong or needed a bit of a reminder. When they started to give me some freedoms and weren’t constantly looking over my shoulder, I took that opportunity to not bother as much with something I did not enjoy in the first place. As far as I was concerned, I had enough going on with all of these new stresses from starting high school. None of the other kids had to worry about diabetes, so it seemed stupid to put myself at a handicap in the new social game I had just started. To a freshman in high school, it appeared as if I had to be as cool as possible to absolutely everyone. Diabetes was not cool and it just seemed like an added distraction that took away from learning how to make friends. Realistically, the only time it made sense to even tell people about diabetes was when I could get some benefit out of it such as getting out of class for a couple hours, or postponing a test that I was dreading because “I was low”.

It didn’t take very long for my parents to realize that things were getting a bit out of whack. Since the last three or four years of their lives had been dedicated to ensuring that I was healthy and in control, there was no way they were going to let all of that go down the drain just because I decided that I didn’t care anymore. Suddenly we were back to square one with them looking over my shoulder every time I made a diabetes move. This worked for a couple weeks but I had already tasted freedom and it was like a drug; I needed more of it. I had to find a way to adapt and get them to back off.

I came up with an ingenious plan relatively quickly. With this plan I didn’t really have to count carbs, bother with many of the pain-in-the-ass shots, or even stick my finger that often. The best part was that my parents were going to think I was totally on top of my game and start giving me some space again. Where could I go wrong? All I had to do was tell them convincingly that I was checking and giving insulin. To make it more believable, the plan eventually evolved into me always saying that I had checked my sugar 20 minutes before they asked and always subtracting exactly 100 points from my last number when they tried to call me out on not checking. That way they would think my sugars were actually decent and they would have no reason to get mad. Without fail a 374mg/dl would become a 274mg/dl so it didn’t seem as bad. The plan was working flawlessly (though I’m sure my parents knew a lot more about what was going on than I realized). I had beat diabetes. I won the impossible game. Who cares that it might have negative health consequences in the future? I sure didn’t.

Every day my parents told me that they wanted me to check more and really get under control but I just brushed them off. I didn’t care. I can’t even begin to tell you how many times we had the “But mom/dad, you have no idea what its like” conversation. It was a lot. How could they seriously tell me how to control diabetes? They had never done it themselves. There was no way they could know how hard it was.

One day my dad came home and went straight to our desktop computer. Immediately he went to and pulled up an article about this guy, Phil Southerland who was starting a team of cyclists with diabetes (Pez Cycling and the Beginning of Team Type 1). At the end of the article Phil said called out to all the parents of diabetic kids and said that if their kid needed someone with diabetes to talk to, they should email him. My dad essentially forced me to email this guy and as he put it, he didn’t care if nothing came of it, but if it might help me get under control it was worth a try…and so began my involvement with Team Type 1.

I started talking to Phil via email and continued this for a good couple of years. I had just gotten into cycling and I thought it was insanely cool to talk to a guy who was a Cat 1 cyclist. At this point, I still could have cared less about the diabetes part of it all. Eventually diabetes did work its way into the conversations though, and suddenly things started clicking. The gears started turning in my head and I realized why it was so important to control this obnoxious disease. Phil gave me the same advice and told me the exact same things my parents had been telling me for the past couple years, but I actually decided to listen to him. (So it turns out my parents were right after all, though I wouldn’t admit that until years later. I was still trying to be a cool teenager and cool teenagers didn’t have parents that knew anything.)

Why was it different hearing Phil say the same thing about diabetes that my parents had be saying and re-saying for years? I am pretty certain it is because I could relate to Phil and couldn’t use the same excuses about the difficulty of control on him. There was no way that I could tell him that it was too hard to control and that I shouldn’t be the one that has to manage this “thing”. He had been dealing with it for at least a decade longer than I had, so if there was anyone who had the right to complain, it was him. Yet he didn’t. He just dealt. I guess that meant I had to too.

I think, in my mind, that my parents didn’t have any credibility when we had our “get under control” talks. Theoretically, I had to listen when my parents spoke but this situation was different. In any previous lecture, I had no way to prove that they didn’t know what they were talking about so I had to just assume they were right and move on with life. In this case, though, I was 100% convinced they were full of it. There was no way to learn how to deal with diabetes simply by reading a book and watching someone like me struggle. That is why I had such a different reaction when I spoke with someone who was dealing with the exact same thing. For the first time in my new, free life, I realized that having diabetes didn’t have to slow me down. It didn’t have to keep me from achieving any of my dreams or even prevent me from having fun. Sure, it still sucked, but at least I could deal with it and still have an awesome life. There was no holding me back now.

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