July 22, 2009
Ramona

My mother was diagnosed with Type 1 diabetes when I was six years old. I remember snippets: how her vision was blurry but no eyeglasses helped, how she finally self-diagnosed diabetes after looking it up in the dictionary (it was the 1970s and my mom was 38 years old – her doctors didn’t even consider Type 1 diabetes), and how she always had Lifesavers. Fantasizing about my grown-up life when I was in elementary school, I imagined I too had diabetes and had to prick my fingers and take shots, just like my mother. I never remember Mom being “sick.” She ran, she swam, she worked hard, and she always had energy. To me, diabetes didn’t mean disability; it meant using cool electronic gadgets and getting to carry around cute little purses with important supplies. It was fun to fantasize about having it.

I remember the exact moment, just before my thirteenth birthday, when Mom diagnosed me with diabetes. I walked into the kitchen and said I needed glasses because sometimes my eyes were really blurry. She sat me down and tested my blood sugar right then and there. When we saw the result – somewhere around 250 – she said, “Oh honey, I think you have diabetes.”

Instead of feeling sad or scared, I was actually kind of excited. I remember calling my middle school friends and saying, “Guess what I have… diabetes!” When I returned to school, I told my teachers I would need to test my blood sugar and take insulin during classes. The first time I tested in science period, my classmates were so interested the teacher had to stop class to let everyone watch and ask questions. I offered to test my friends’ blood sugars after school. Until the principal intervened, I was doing lab work on the blacktop every day at 3:20.

In my late teens and twenties, I travelled a lot. In 1992, when I was 17, I worked on a farm in a remote village in Poland for 3 weeks. A year and half later, I went to northeast Brazil, very close to the Amazon, for three months to help build a school. From age 20 to 21, I taught at a teacher training school in rural Mozambique. I brought 12 months of diabetes supplies with me in my carry-on – that’s 5-7 shots a day for 365 days, plus test strips, insulin, and assorted accoutrement. I’ll never forget the face of the Bulgarian airport screener as he pawed through my giant duffle bag of syringes, incredulous that I would blatantly try to carry them through security. During college and graduate school, I spent 15 months in Russia. After graduate school, I worked in Berlin for 5 months, returning to the U.S. by container ship – a 12-day journey across the Atlantic without a doctor on board. I was able to have these experiences because it never occurred to me that I couldn’t or shouldn’t due to diabetes: Family and friends were supportive, and my mother was an incomparable role model. Everywhere I travelled reminded me how lucky I was to have diabetes in a country like the U.S. rather than somewhere like Russia or Mozambique, and to be surrounded by caring family and friends.

So what makes having diabetes difficult? For me, 2 things:

1. Managing diabetes requires a constant awareness of one’s body and of food. Like many other young women, I struggled with body image and food issues as a young adult. I am sure having diabetes had something to do with this. Now that I’m older, I focus more on health. To be healthy with diabetes requires learning to live with a degree of energy, emotion, and intellect in constant reserve for diabetes management. That’s not bad, but it’s not always easy, and it’s difficult to share with people who don’t have diabetes.
2. The impact of diabetes on my body and lifespan is unclear. I cannot be certain high blood sugars aren’t taxing my kidneys, rupturing blood vessels in my retinas, or compromising circulation in my extremities. Nor can I be sure that an unexpected attack of low blood sugar won’t send me to the ER tomorrow. The result is an ever-present, underlying sense of vulnerability and uncertainty about my health and future, aggravated by the knowledge that I will never attain perfect diabetes control.
   

As I age and as technology advances, diabetes is becoming increasingly manageable: My nine-to-five job encourages a more regular eating, sleeping, and exercise schedule, with minimal opportunities for adventure travel, than my student life did; and I now use an insulin pump and continuous glucose monitor. I’m also increasingly aware that relative to more intractable diseases such as cancer or unpredictable events like car accidents, diabetes is not so bad.

The most recent chapter in my life with diabetes is Team WILD. Training for a half-Ironman is HARD. I’ve completed 7 marathons, but I honestly don’t know if I can train hard enough to complete the Longhorn 70.3 in October. And that’s ok. The journey has been worth it, regardless. Hearing the stories of other women with diabetes has touched and inspired me unexpectedly, I’m paying more attention to my blood sugars than I have in years, and I’m able to bike and swim distances for the first time in my life. Thanks, Team WILD. See you in Austin!