Change has been on my mind a lot lately. Recently I entered a writing contest hosted by Alicia on her blog, Forever Changed. She wanted people to submit stories about something that has forever changed them. I wrote about the one thing that has quite literally changed everything about me all in an instant. All my other ideas are an ongoing metamorphosis. For whatever reason that I still don’t know how to put into words, I didn’t want to post my story. And not because I didn’t win. But something happened today. More changes in my life and if I’m entertaining the idea of publically sharing this new change why not share my personal reaction to another change in my life that everyone already knows about? So here goes.
My grandma was telling me stories as I lay on her bed with the white quilted bedspread, just staring up at the ceiling forcing myself to concentrate on her voice. The stories had virtually nothing to do with anything and least especially the stress of the moment but somehow I found them so soothing. My eyes scanned the room and landed on the wall where she kept a collage of picture frames. All my cousins’ school pictures smiled back at me. Grandma was talking about how inadequate and scared she felt to bring her first baby home. Her gnarled, arthritic hands mimed holding an infant. It was interesting to view my grandma as human and feeling as vulnerable as I felt. I could see the mirror over the dresser but not my reflection. The knickknacks and trinkets scattered over the doilies on the dresser looked the same as always yet I knew in this moment I would never be the same ever again.
Despite my best efforts to listen to Grandma’s calming voice I couldn’t help but run through the what ifs. What if something was really wrong with me? What if I hadn’t eaten the licorice my aunt had offered? Was this really my fault? What if seeing a doctor will really help me? I was tired of rushing to the bathroom every 2-5 minutes and that fateful day I had had a big accident. I was nine years old. Too old to wet my pants.
My parents were concerned with the unquenchable thirst and consequent bathroom issues. Everyone was but what could anyone do but make a joke of the situation? My mom told me later that I was a bear to deal with that whole summer. I was angrier than ever before and I would scratch myself as if I was hoping to scratch my skin right off.
My mind drifted over the events of the day. The humiliating accident was downplayed and quickly taken care of. What finally got everyone’s attention was my uncontrollable shaking. We had just finished eating at Scott’s Drive In and I hadn’t finished my soda. I climbed into the back of the truck, with the carpet kit and shell, holding my drink. Only I was about to spill it I was shaking so hard. I could not stop shaking. What was wrong with me? Even my brother and sister were sobered by the scene.
Grandma’s voice continued to tell stories. At first I tried to figure out her purpose in sharing arbitrary memories with me until I realized it was a way to take my mind off the uncertainty of everything. I don’t even know where everyone else was. Hopefully my grandpa was talking my mom down from a high strung anxious reaction. Maybe he was talking to both my parents as well as my brother and sister. Grandma’s soothing tone as she talked about anything and nothing combined with the soft bed felt dreamlike. Despite the respite from reality there was no real escape. I could not stop thinking of the word diabetic. My mom had said it and I wasn’t sure exactly what it meant. It was Labor Day so none of us would know for sure until I went to the doctor the next day.
Being nine and not yet ready to accept what was happening to me, I thought maybe if I went to the hospital this would all go away soon. But the doctor was telling my mom to find another doctor for me; a specialist who could care for the needs of my disease. Disease. I hated that word. It made me feel like a poor, dirty child in a third world country. Those kids get diseases. Not me. My family didn’t have a lot of money but we took care of ourselves. How did I get a disease? The last thing I wanted was for anyone to know.
Everyone knew. My dad came in to the hospital room to tell me he had called his family who were spreading the word to everyone else in the family. Oh how embarrassing! Soon everyone at school would also know I had a disease. Visitors included family, church members, and friends.
I spent a week in the hospital. The doctors wouldn’t release me until I learned to give my own injections. That was the hardest part. I could inject saline solution into oranges, nurses, my parents, anyone who would let me shove a needle in their arm but I could not make myself do it. Even poking my finger with a thick, jagged, ruthless looking lancet was nothing compared to the anxiety of having to push a needle into my skin. Eventually I did it my own way. Really, really slowly. It worked so everyone was happy.
I have now lived with Type 1 diabetes, also known as juvenile onset diabetes, for 23 years. I am extremely grateful for my parents and their attitude with the situation. They were of course scared out of their minds. They probably blamed themselves. In fact, my grandparents felt a sense of responsibility as well since my grandpa was diagnosed with hypoglycemia around the same time as my diagnosis. These were not emotions I was aware of at the time. My parents seemed to take it all in stride. They would not do things for me since I was old enough to do it for myself and they would not let me use diabetes as an excuse in life. Diabetes was never the focus in my family. It soon became a part of me, much like my brown hair or glasses.
Looking back I can remember just how hard it was to be different and how frustrating it was for me that people didn’t understand. I probably came home from school crying more often than I didn’t for the rest of elementary school which is why I told people on an as needed basis in junior high and high school. I was a little more open about it in college but not much. Now, I’m willing to talk as much about it as anyone wants to hear.
For all those memories what I remember about growing up are the same things most people remember. My best friends, my favorite music, camping trips, family reunions, boys I liked, slumber parties, you know - the usual growing up kind of stuff. The diabetes memories are all filed together in a diabetes drawer in my mind. Everything else about life feels normal.
I admit I used to worry that my diabetes would keep me from realizing my dreams in life. I don’t mean little dreams like college or career choices. I successfully moved over 200 miles away from home to earn two bachelor’s degrees and later I was hired to teach elementary school. That wasn’t any harder for me than it was for anyone else. Diabetes didn’t stand in the way of regular life. My fears were whether or not any guy would want to marry a girl who needs insulin, syringes or insulin pump supplies, test strips, blood glucose meters, lancets, alcohol preps, and constant trips to the doctor to help monitor diabetes. What if the kids in school were right and I couldn’t have my own children? Would any guy even want to try to start a family with someone like me? I considered myself expensive and high maintenance and not in the same way as ultra vain girls are.
My doctor approved me for an insulin pump shortly before I met my husband. I could not have asked for a more perfect guy. He learned how to use my pump with me and loved it because it was a gadget! His mom had been diagnosed with Type 2 diabetes, or adult onset diabetes, not long before we met. I think that helped his interest level in the extra things I had to do in order to stay healthy. Luckily for me he is happy to pay any cost that will keep me alive. He understands my diabetes and the ups and downs that come with it far better than anyone else on earth. There was no hesitation when it came to wanting kids. He had the same attitude about diabetes not interfering with life that I had been raised with. He stood by me encouraging me through the tough times of three high risk pregnancies. I count becoming a mother one of my greatest achievements because none of my children has any lasting consequences of being born to me, a diabetic mother. What’s more normal than being married with children?
I never wanted to be labeled the diabetic girl. I wanted to be me. That’s how I live my life and that’s how people see me. I’m not the diabetic girl. I am Tristan, who happens to have diabetes. It’s just something that makes me a little more interesting. Diabetes may have forever changed me but it does not define me.