40 years ago, my parents were told to take me to the ER and get my blood taken. I was 6 yrs old. It took 2 nurses and a questionable doctor 3 tries to get a vein. They held me down, I cried. My Dad took me to McDonalds for pancakes (with syrup, ugh) afterwards.
That afternoon, my parents were on the phone, my Dad walked out the front door and sat on a rock (yes we had a rock garden, weird) and for the first time ever, I saw my Dad put his head in his hands and cry. The next day, with my little suitcase and teddy bear, my parents took me to Hannehman Hospital in Philadelphia. I learned the word “diabetes” and that I would have to take shots. In my 6 year old brain I thought the shots were like the blood draw the previous day and doctors would hold me down. For two weeks, I went to arts and crafts, practiced giving injections to an orange and slept in a room full of children with various ailments. I remember the boy in the bed next to me, Raul, who had a heart condition. His Mom cried a lot. There was a girl across from me who had been severely burned in an accident. The thing that scared me the most though, was that I wouldn’t get to go to school. I was very eager to start 1st grade but now, something was wrong with me, I was sick and I thought I was going to be sent away.
My parents and relatives visited me everyday. At night, my parents would call on the pay phone to say goodnight. My Dad would tell me I needed to be brave for the other kids. I would try not to cry, I would cover my face, begging my parents to please bring me home.
Type 1 Diabetes treatments and research have elongated my life expectancy. Although there are a litany of items I hate about T1D, I believe some of the best parts of me are based on the idea that I live on borrowed time.
Outliving peers who’ve been on the same path makes for some incredibly hard feelings. Testing technology that stands to improve people’s lives is awesome yet extremely troublesome when one looks at the lack of access so many of us face. Diabetes is a tricky disease with no easy cure… yet.
I haven’t fooled myself into thinking riding a bike will cure T1D, but certainly funds raised from walking and riding has directly impacted the fact that I am here. The eyesight i need to ride is proof of the technological progress and amazing doctors, in my lifetime.
I’m the co-coach of my JDRF ride team this year. You’d be hard pressed to find anyone (including me) who thinks I’m a “good” coach. I’m not the technical person. Not even close. I care most about safety and that people enjoy the ride (in that order, safety FIRST). And I as I begin what marks my diabetes’ 40th birthday, I plan to live (and celebrate) with just as much vigor, determination and wild ambition as I guess I’ve always had but it’s tempered these days with a growing sadness for the increasing number of people who aren’t here with me.
My role in the diabetes space has evolved over time and I’ve worn a lot of hats, jerseys, and a hospital bracelet with my first name misspelled, but one thing has never changed, and that’s my belief that we can help make a difference.
Thank you for cheering me, and all of those affected with T1D, onward.
Alieia:
I read your DX story with a smile. I was at Disney world and was so ill. My last morning before I got home and went right to the hospital I had pancakes. Darn I enjoyed those pancakes. Now I was 17 and had some control. But darn I love pancakes. A lot.