I’ve been a type 1 diabetic for 16 years. Diabetes is not one of the issues listed in TWLOHA’s mission statement, but it’s still the reason I’m here.
On April 16, 1997, my mom took me to see my doctor and get some tests done. Afterward, she did what any mom would do for a five-year-old who had been fasting for eight hours: she took me to McDonalds and got me a cinnamon roll. From there, I went to pre-school. Later in the day, the doctor would call my mom and me back in to his office. I took my Beanie Baby, Happy the Hippo, with me for comfort.
The doctor informed my mom that I had type 1 diabetes and I had to go to the hospital right away. She asked if we could go home and get some things for our stay. He said no, we needed to go now.
So we went. I got more blood drawn, and they gave me a blue Snoopy band-aid. My nurses gave me an IV. They told me I was brave. My mom remembers them crying because of my strength. I just remember being confused. I had no clue what this all meant.
For those of you who might not know, type 1 diabetes is basically when your immune system makes your pancreas stop producing insulin. Insulin is the stuff that breaks down food and turns it into energy and regulates the levels of sugar stored in your body.
A nurse came in to teach my mom how to give me insulin shots, but she said she couldn’t give her five-year-old daughter shots. The nurse said my mom would be able to do it, because my life now depended on them. My days as a five-year-old would suddenly be filled with carbohydrate counting and blood sugar tests.
That was 16 years ago. Sixteen years, three endocrinologists, five insulin pumps, over 12,288 injections, over 35,040 blood sugar tests, and more doctor visits than I care to remember.
Since then I have had countless, almost daily, conversations that remind me I am broken. Every day, as I test my blood sugar and give myself insulin, I am reminded I’m not “normal.” For years, I was silently buying into the lie that my diabetes was stronger than me. The lie slowly dug itself deeper into my mind. I start telling myself I wasn’t good enough. I thought I needed to earn the love of the people I cared about. I didn’t talk about the way I was feeling, and at the time I didn’t really see the connection of my diabetes to my self-esteem.
In 2007, I heard about TWLOHA. They countered those thoughts bouncing around in my head. They told me that it was OK that I wasn’t OK. They let me know I wasn’t alone in my struggles. They declared that I was allowed to talk about my issues. More than that, they said that other people cared about my problems and wanted to walk with me through them, if I gave them the chance. They said that hope and help are real.
I began to passionately follow TWLOHA. I loved what they were offering me, and I wanted to share it with others. In 2010, I got to attend the MOVE Community Conference in Chicago. During one of the sessions, Aaron Moore mentioned how diseases like diabetes could affect our mental wellbeing. I had never thought of that before. No one had ever mentioned that. There had been talk of the affect on my kidneys, liver, heart, circulation, and eyes—but no one had ever mentioned my self-esteem or my outlook on life. Suddenly, my love for TWLOHA and their mission made sense. I had always said it was about the people I cared about, which was still true, but it was a personal passion, too.
Type 1 diabetes is a hell I would never wish on anyone. But it is a part of who I am. It is not, however, all that I am. I refuse to let it define me. I will not let it stand in the way of my dreams. I am more than my diabetes.
You are more than any disease, any addiction, any problem. You are more than any one word, any one idea. Your struggles can shape who you become, but don’t let them define you.
I would not be who I am today without my diabetes, and that is why I choose to celebrate. I choose to remember that I might not be able to get rid of this disease, but I don’t have to let it win. I can still fight. I can learn and grow. I am not alone, and there is hope for the future and for today.
So each April 16, I will rehash the story of my struggles. But I will also eat cake. And let my roommate sing to me. And wear stickers proclaiming my anniversary. I will celebrate.
—Rebecca, Summer 2013 Intern