20 years ago this month I was diagnosed with Type 1 diabetes.
Much of the diagnosis is fuzzy in my mind. I do not remember being sick for more than a day or two before diagnosis, but apparently I had lost a lot of weight. If you see pictures of me in kindergarten you’d see that I was a ‘normal’ child…….if you see pictures of me from the summer between kindergarten and first grade you’d see that I looked practically skeletal.
I remember being thirsty a lot during the day or two before diagnosis. I remember wetting the bed and having to go to the bathroom all the time. My family was on vacation in the Wisconsin Dells, which made it worse – every morning my mom had to explain to the hotel maid that the mattress was wet. I remember going to a small waterpark and crying because I was so ashamed that I couldn’t hold it and had peed in the pool. I remember seeing a Native American dance ceremony and missing half of it because my mom had to take me to the bathroom over and over and over. I remember waking up our third day there and being so nauseous and weak and my parents being both worried (they had pretty much figured it out by that point) and upset that our pre-paid activities for the day were obviously going to have to be cancelled.
We drove the hour and a half back to Milwaukee, with my mom sitting in the back seat with me, holding the Super Size cups from a gas station’s soda machine as I vomited into them continuously. We didn’t go home – we went straight to the emergency room of the Children’s Hospital of Wisconsin. The doctors knew immediately that it was Type 1 diabetes, though I don’t remember them saying it. I think I was losing consciousness. I do remember my mom being told I was being admitted to the ICU and she could go home to get me some things, but I wasn’t leaving. I remember that although they knew what it was, there was a ‘protocol’ they had to go through. I don’t remember being given a c-peptide test, though I’m sure I was. I DO remember being given a GTT (glucose tolerance test). I vomited up all of the sugary drink the first time and had to do it all over again. (I’m fairly certain it was done AFTER I was brought out of DKA, though!) I remember being in the hospital for a full 7 days, all the while understanding that something was wrong but not fully understanding what, and knowing that I was feeling better. I remember my grandparents visiting me in the hospital. I especially remember when I was playing down the hall from my room in the ward’s play-room with another little girl when my grandpa walked in to find me….I ran to him, shrieking with a 6 year old’s innocent joy, and ripped my IV out.
I do not remember an explanation being given to me while at the hospital, though I’m sure one must have been supplied. I remember being told that they were so close to a cure….ten years away at most. I was told that I’d live with diabetes until age 16, at most, but I didn’t understand how it affected me either way.
I remember being SHOCKED when I got home and my dad wanted to check my blood sugar and then told me I had to get my shot before I could eat dinner. I had thought that now that I was home, all the poking was over. I remember my mom giving me the shot…it bruised my tiny little thigh and I cried. My mom cried…..and that was the one and only shot she ever gave me. I don’t think she had it in her to hurt me, even if it was necessary. My dad took over all of it.
I remember finally understanding that what I had was what my aunt had….and feeling a little less alone. She tried so hard to make me feel better those first few weeks. She came over on my second day home and talked with me. She let me watch her test her own blood sugar and give an injection…assuring me that someday I would do it all myself too, and it wouldn’t hurt so bad.
I do not know the exact day that I was diagnosed, nor do my parents remember….in the grand scheme of things, that’s not important. What’s important is how the life of a small innocent child was changed, on whatever day that was, through the diagnosis of an incurable disease.
As of this month I’ve lived with diabetes two times longer than the longest projected time I was told at diagnosis and I think I’m finally at peace with the idea that this is likely to be with me for life.