I was diagnosed with diabetes in 1994 when I was six-years-old. It was an odd and painful experience. I was visiting my godparents in southern Virginia and I became stomach sick and couldn’t hold down any food. My parents took me to the doctors when we got back home to DC the next day, and he told us it was just a stomach bug, or something like that. Then I was okay for a week or two, but things got worse again, and quickly. I was vomiting, dehydrated, and felt awful. I went to Children’s hospital with my mom and my sister the afternoon of Saturday, June 4th. I’ll never forget that day, the day I diagnosed with juvenile (type 1) diabetes.
My dad was away teaching university in Hartford, Connecticut, and we paged him. There weren’t cell phones or email correspondence at the time. He responded an hour or two later, and was on the train home the next morning to come see us. I was only six so I don’t remember having any parameters for real pain. But those next few days I felt terrible. Being so young, I didn’t have any understanding of diabetes; and neither did my family. Over time I’ve come to realize that everyone knows diabetes, but no one really knows the details until they or someone they love has lived with it.
It’s still a bit odd today, only my friends and family really understand the disease. People generally have this misinformed understanding, and believe that diabetes is a self-inflicted disease because of bad diet and exercise and you can’t eat anything with sugar. It’s not their fault, there’s just not a lot of awareness in people who don’t, personally or through their family, live with the disease.
Anyways, back to D.C. in 1994. My dad arrived Sunday afternoon and at that point we were finally beginning to grasp the situation. We now understood this wasn’t just a cold or a flu, it was real. Real as in permanent, a life term with a sentence that was already underway. After hours on an IV, speaking with doctors, being consoled by my family, and still feeling terribly ill, I remember the moment where I finally accepted what was going on. It was an odd feeling of acceptance. I didn’t want to, but that was that. I was a juvenile diabetic and the coming days, the rest of summer, and the coming years of my life were made a bit more challenging.
The 1994 World Cup had just kicked off and my neighbors came in and gifted me a stuffed animal of the US Soccer mascot. I’d only recently fallen in love with soccer, and at the very least I was laying in bed watching game after game on the zenith TV set. After a few dreary days in the funny smelling hospital, I was recovering well and we had a general understanding of what diabetes is, how it affects your body, and the basics in terms of treatment and care.
The next couple weeks went by with ups and downs, I don’t remember it extremely well, I was only six so my memory is a bit vague. What I remember most was the feeling of high blood sugar levels, wetting the bed all the time, having key-tones (when your BG is high and your urine is extremely yellow, an indicator of dehydration and illness), and worse of all, not being able to eat and drink what everyone else was eating and drinking. I was angry at my family, at the whole world really. I gave into that whole “woe is me” cycle, and kept blaming other people.
Diabetes was an evil force that I couldn’t grasp. It just made me angrier and angrier for the first year or so. That next summer my parents took me to Joslin Diabetes Summer Camp. I hated that too. But going there was critical to my life and management of the disease. I returned the next summer and liked it a bit more, and began to better understand the disease. That a lot of other young men (and women, who attend the girls camp) were dealing with my same pains. My same reality.
We learned how to organize our lives, to plan our diet and exercise schedules. These lessons were instrumental. I learned what food I needed to eat and when, how to snack in between meals, how to be conscious about what I’m doing, where I’m going, and when did I last eat. Did you know diabetics make hundreds more decisions on a daily basis? Because you always have to think about whatever you’re doing your blood sugar needs to be in good range. That you’ve eaten recently and that you’re nourished.
Although at the time it frustrated me so so much, I now appreciate being diagnosed at such a young age. I grew up with diabetes and therefore had no other choice than to accept and embrace it. I had to carry on and I’m eternally grateful to my family and friends who were there for me. The memory of being diagnosed is certainly a bit vague, but the pain I felt I can still feel today. Anytime my blood sugar is high or low for no logical reason, that nauseous feeling of a high BG and the dazed and dizzy feeling of low blood sugar, that pain comes back. The physical and mental pain, the why me?
That’s when I believe it’s important to understand diabetes can be simple and yet so complex, and that you have to take a deep breath and deal with it. There are millions of other diabetics dealing with these same physical and mental pains that are exhausting. There are millions of others dealing with much worse.