Going through some old files on my hard drive, I came across this letter I wrote to the Wisconsin senators a half a lifetime ago. Reading it over, I am struck, not only about how much my writing has changed in the last 13 years, but by how much hasn’t changed. My D-regimen may be enhanced by new technology, but I am still waiting for that cure.
March 1, 1999
Dear Senators Kohl and Feingold,
I was at one of my brother’s soccer games when my mom decided to take me to the doctor. Another soccer mom, who is also a nurse, thought that it might be a good idea. My mom had been noticing that I was losing weight, and I was really hyper. I was also wetting the bed. Most six-year-olds don’t have that problem. We went to the doctor’s office. He checked me over and did some tests. Then came the diagnosis, I have diabetes. I had no idea the role diabetes would play in my life.
My family learned fast to take care of me. I was out of the hospital in a week. In the beginning I would only let my dad give me shots because when my mom gave me a shot it hurt. She would have to bribe me with stickers and sugarless candy to be able to give me my shots.
When school started in August, only three months after my diagnosis, I would have to check my blood in school, before lunch. At that time no one in my class really knew or understood why I checked my blood sugar. Some of my classmates would make rude and sometimes strange comments such as, “What is that? A football test.” Even a simple “Eww gross” would hurt deep down.
The doctors at Children’s Hospital of Wisconsin suggested that my parents and I give a demonstration to my class and explain my diabetes. Later that school year my parents came to school, and we demonstrated how to give a shot on Fivel, my stuffed mouse, and I showed them how I check my blood. I’m not so sure a bunch of second graders really understood all that was said, but I wasn’t bugged as much anymore.
During second grade, my family and I moved from Milwaukee to Waukesha. At my new school I could check my blood in the health room instead of the classroom. This was good because I got fewer mean comments.
I also made a lot of new friends. One in particular was Molly. I went to my first sleep over, as a diabetic, at her house. My mom talked with her mom for over a hour just to make sure every thing would go well. She had to make sure I would do my shots and blood tests, and to make sure I ate right. Molly’s mom even went out and got special sugar free syrup for my pancakes. By this time I could do my own shots.
Elementary school went by really fast. I really liked it because I was with the same kids every year. They all knew about my diabetes. By sixth grade I was doing well in school. By now I had my diabetes pretty well under control.
The summer after sixth grade my brother and dad were in a motorcycle crash and my dad was in a hospital in St. Louis, Missouri. I had to stay at my grandparents’ house. As much as I love my grandparents, when I was at their house I was always smothered with questions like, “Do you need a snack?” or “Do you need anything?” I know they meant well but they were too pushy about my diabetes care.
There is always a lot of misunderstanding about diabetes even with my family. My brother Jim and I have a really good relationship. We talk all the time about all kinds of stuff, but never about diabetes.
Next came middle school, a jumble of new people and new schedules. I had physical education everyday, and I had the last lunch hour. This posed a problem because my blood sugar level was always low at lunch. I had to keep juice boxes in my locker to have between classes.
During middle school the health room was on the third floor. This became a problem because all my classes were on the first and second floors. I was always the last one to lunch and again came the questions, “What are you doing?” or “Why are you always late to lunch?” and a couple of wise cracks. The good thing is that middle school only lasts two years. The health room aide was always saying how responsible I was because I came up there every day. The truth is I never thought of skipping it.
I am now in eighth grade, and I am 13 years old. I don’t think the health room aid would be saying that I’m so responsible this year. The nurses at Children’s Hospital of Wisconsin don’t think so. They tell me that I don’t eat enough for breakfast and my blood sugars are to high. Unfortunately this is all true. (I’m not a morning person, so I don’t have time for a good breakfast every morning.) In school a couple of my friends and I stay in choir during lunch. Sometimes I don’t even go and check my blood.
Being a teenager is hard enough, try being one with diabetes. We are always getting told what to do and there is always so much pressure to do good from peers and parents.
My dream is to go to college and become an oncologist or some other kind of doctor. I want to be able to help people who are worse off than I am.
I need your help to fulfill this dream. I get good enough grades (I got a 4.0 last quarter) and I have the will power to succeed. My only setback is diabetes. With it, there is so much to worry about. I have to watch what I eat and exercise. If I get too many high blood sugars I have to worry about my eyes. (How many blind doctors are out there? Not many!)
Finding a cure is important for me because I know what it’s like growing up and having to worry about my diabetes. I do not want the next generation to have to worry about diabetes, and I want them to be more informed. My only chance of ever being cured is if we spend more time and money to find a cure. We are the future. Being healthy as a kid would be reassurance to a healthy future. A cure would leave us with less to worry about, and we could spend more time on our education. We need your help in order to have this successful future.
We need a cure even if it doesn’t help me it can help the child who gets diagnosed tomorrow or the next day. We also need people to be more informed about diabetes. We can accomplish this by having people speak to school groups.
A few summers ago I went to diabetic camp. I had a lot of fun and met a lot of people. We learned a lot about diabetes with fun and games. I think we should open more camps not just for diabetics but also for their friends, siblings, and children.
Already private organizations raise money by sponsoring events such as walks for the cause, but we need federal government help.
Diabetes is just as much of a problem as any other disease out there. It shouldn’t control us; we should control it. I am writing this letter because I care about the cause, and I love to be able to help with it. Please take into consideration all that I’ve written and please spend more money on our cure, not just for me but for everyone out there who has diabetes and all of the people who will ever get it.