My Way-Too-Sweet Sixteen: A Type 1 Diabetes Diagnosis Story

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The theory in my family is that my pancreas had been dying a slow death for fifteen years. A cow’s milk-related allergy (so the family lore unfurled) had spelled doom for this most delicate of organs before I could even walk. But let’s give credit where credit’s due: my pancreas took its time destroying itself, waiting until my sixteenth birthday before giving up the ghost.

While the research is far from conclusive, some past studies have suggested that beta-lactoglobulin, a protein found in cow’s milk, may contribute to later development of Type 1 diabetes. As a baby, I broke out in severe red rashes when given cow’s milk. Concerned, my rural-Wisconsin-dwelling parents bought goats named Friday and Crusoe and fed me their milk instead. This might have helped, who knows—maybe the damage was already done. Or perhaps this family legend has nothing to do with my disease. The reality is that tracing the factors behind one’s development of Type 1 diabetes remains elusive, and may be linked to a number of factors, whether environmental, genetic, or virus-related.

My Way-Too-Sweet Sixteen: A Type 1 Diabetes Diagnosis Story
Mom and Elka

Whatever the explanation for my development of Type 1 at the age of sixteen might be, the stark truth is that the months leading up to my diagnosis were near impossible. Not that I noticed.

Developing Type 1 is a funny thing—its encroachment is so subtle, so nefarious, that you barely recognize that anything has changed. I likely went undiagnosed for months, and my symptoms were simply absorbed into a new reality, even if it didn’t make sense. That can of Coke I was dying for by the end of the day? Standard fare for all teenagers. My need to stop halfway up the flight of stairs to catch my breath on the way to English class? That must happen to every high school sophomore. Every moment of my day felt like I was walking through thigh-high mud. But the sinking, the slow descent, had taken so long I had no memory of any better method of perambulation.

My mom was the one to notice something was very wrong. Her beloved and late father, a jolly, round carpenter and seasonal Santa Claus, had developed Type 2 diabetes in his 50s, and my mom was well acquainted with the signs of hyperglycemia. On a weekend trip to visit my grandmother, she pulled out a likely out-of-date glucometer and even more likely expired test strip, and tested my blood sugar. Upon reading the result (300, which I believe was the highest that particular meter would register), she declared it “a little high.” Classic midwestern minimizing at its best.

I was hospitalized a day later, though the endocrinologist overseeing my intake later told us that she would’ve hospitalized me immediately if she’d known that I’d lost 20 pounds in two months.

That first day in the hospital, I curled up into a little ball and cried until my face, neck, chest, and arms flared red and rashy, my appearance a perfect reflection of my cow’s milk allergy babyhood. Doctors came and I glared at them until my chin trembled with poorly disguised despair. Visitors arrived and I hurriedly sent them away. My entire high school marching band marched from school to the hospital, instruments in hand, to wish me well, and I could only give them the most cursory of thank yous before collapsing into tears.

Luckily, my body responded quickly to insulin therapy. Always fiercely independent, I forced myself to wipe the tears from my cheeks and plunged a syringe into a plump orange for practice, then stabbed another into my arm a moment later.

The only person who made me feel any better was my best friend Jessa. Something of a bad girl, she promised that we’d soon be borrowing her mom’s station wagon and heading out to the next music festival, just as soon as I got my ass out of the hospital bed. She provided me some reassurance that life could go on, as normal, even if I was pricking my finger and flooding my body with synthetic insulin several times daily. That night, she stayed with me to watch Monty Python and the Holy Grail in my hospital room, and since she was there, laughing alongside me, I didn’t even think once about the risk of amputations as limbs were merrily lopped off left and right during the film.

Things didn’t get better right away upon my release into the world of normal people and their normal pancreases. I quit karate, even though I was up for brown belt testing, because I was frightened of the hypoglycemia I experienced during every class. I gave up too quickly—I know that now—but at the time, it was all too much. I was desperate for safety, and any activity that so quickly turned me into a shaking, sweating, discombobulated mess terrified me. (Flash forward to a year after my diagnosis, when I found myself on a hike with a mile left to go, an already-consumed granola bar, and a bloodsugar of 21. I made it back to the car and to another sugar stash safely and with single-minded purpose, thanks to my year of Type 1 experience.)

I also quit piano lessons, though I might have likely done this anyway (especially after my piano teacher’s husband saw me buying condoms with my boyfriend one night at a convenience store). I stuck with cross-country ski team, and I also excelled at my other musical classes, including wind ensemble, orchestra, madrigal choir, and jazz band. In many ways, my diagnosis forced me to pick and choose among my interests, to decide what was truly important to me.

The one true piece of good luck in this entire diabetes debacle was that my family, for the first time, finally had health insurance. We’d secured it only a couple months before my diagnosis. I remember realizing that without insurance, each bottle of insulin I took would cost my family upwards of 100 dollars, not to mention the exorbitant price of test strips—which never made sense to me: why should the most preventative part of Type 1 management also be the most expensive?

Many of my decisions related to college and career were directly affected by the absolute necessity of health insurance. Ultimately, I chose not to pursue music performance as a major because I was too scared of inadequate health coverage. And I chose to do two years of AmeriCorps after college in part because the program offered health coverage.

My diagnosis, timed as it was around my sixteenth birthday, spelled the end of childhood for me. I was no longer carefree, impetuous or spontaneous. Every decision I made took extra thought, extra preparation, whether that meant counting out needles for a weekend trip or bringing enough granola bars for ski practice. In some ways Type 1 diabetes forced me to grow up, to take responsibility for myself, which isn’t necessarily terrible. But it also placed a weight on my shoulders that remains there today, reminding me that every action – even something as simple forgetting to bring an extra granola bar – has consequences.

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1 Comment on "My Way-Too-Sweet Sixteen: A Type 1 Diabetes Diagnosis Story"

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Lucia Maya

This is a great, very real story, and very similar to my own. Nice to read an authentic experience of diabetes diagnosis!

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