Where we left off: The doctor made a prediction: the cure is just around the corner. Every morning he expected to hear that a cure had been developed. As a nine year old, that was extremely encouraging. Fifteen years later, it is disillusioning. (Read Part 1 of 3)
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The initial years, my diabetes was largely managed by my parents; they gave me injections of insulin, they cooked and measured out food for me, and they explained to my teachers and classmates why I couldn’t have birthday cupcakes. My mother bought a little white food scale, and I learned to think of food as an allotment of ounces and carbohydrates, rather than a meal or sensory experience.
Diabetes became habit and routine as I grew older, and I began to take control of more and more of my regimen. I learned how to estimate and when I could stray from fifteen-gram increments of carbohydrates. I learned how to give injections to myself in my thigh or stomach. Somewhere in this growing-up-montage I reach puberty, and teenhood, at which point my respect for my parents, my satisfaction with my-so-called-life, and my diabetes care all began a simultaneous slide into the moody and awkward depths of adolescence.
I stopped going to the doctor, so I’m not sure where my HbA1c ran during my teenage years. Eating candy and the other Forbidden Fruits of Diabetics became an expression of self and rebellion, much like cursing and sneaking into movies. Diabetes became a crutch and a point of embarrassment, and I kept it hidden from friends and teachers as much as possible.
The crescendo of this act comes during the summer before I left to UC Berkeley, when I returned from a two week trip, galavanting around Europe with friends and taking insulin injections almost randomly. I measured my blood sugar and for the first– and, God willing, last– time in my life saw the dreaded “High” come up in blocky little letters on the OneTouch screen. I had in a sense come full circle; I was above 500 at diagnosis, and, living again as if I didn’t know I had diabetes, was back above 500.
I wish, both for dramatic effect and my longterm health, that this is where the story turns around. Seeing how out of control I got, I was shocked back into diligence and better diabetes care. Unfortunately, the denouement that comes after that scene is much slower. I regained some control towards the end of the summer, and was marginally more attentive for the first few weeks of college, but I was still a proverbial Bad Diabetic, eating donuts and avoiding measuring my blood sugar when I knew it would be bad.
But, change did come– you see, there was this boy. Cute, tall, with a way with words. As we grew more serious, he was forced to draw a line in the sand; he could not, and would not, date or marry someone who was on a fast track to organ failure and early death. At first, I took offense; I stomped my feet and gnashed my teeth and complained, for in my Sleeping Beauty version of romance, love and marriage had nothing to do with the corporeal realities of disease and healthcare.
But he was right, and I knew it. And I was terrified. I often tell those who ask what being a diabetic is like that, in terms of chronic illnesses, diabetes isn’t so bad, but it’s incredibly inconvenient. The truth is more complicated than that; diabetes is a daily, hourly, minutely reminder that I can’t always call the shots, that I am bound to a body both broken and opaque, disparate from the orderly, philosophical ideal I wish my life were, with commas and periods and T-cells all properly placed.
The real trick of diabetes, though, the real twist at the point of incision, is that diabetes gives just enough control that I am responsible for my health and my well-being. Part of me wishes it was a more extreme disease, and in many ways, my teen rebellion consisted of pretending it was: there’s no way to control this disease, so I won’t even try. It’s impossible. But that’s disingenuous, as there are so many processes, tools, and resources that improve and aid diabetes management. Everyday, diabetics live vibrant and productive lives, and everyday diabetics work against the path of self-destruction I had for many years chosen. And so I too should be able to manage my diabetes; I have the tools, the self-awareness, and the support. I am capable, surely– which is exactly why every high blood sugar, every out of range HbA1c, feels like a personal failure, and a forced recognition of Falling Short.
It has been almost seven years since I agreed to start managing my diabetes at my now-husband’s request, and I wish I could say I was terrified; I realized what I feared was that sense of failure and inadequacy; and I got over it. Unfortunately, the emotional struggles of diabetes, like the physical struggles, are about consistency, dedication, and methodology, rather than One Big Change that Fixes Everything.
