When I turned 21, I was diagnosed with diabetes, and food became a living nightmare. All women can relate to flipping over a package and counting calories, tallying up how a certain meal might fit into our day. But, calories aren't my battle; carbohydrates are. Those large molecules that are found in nearly everything you eat became the biggest battle of my life — the one that could one day kill me.
I took a taxi to the hospital the day I found out — a big, yellow junker that, believe it or not, was playing Joni Mitchell. As my driver pulled up to the roundabout with a "this is your stop, kid" kind of nod, he turned the meter off and the music up. “Don't it always seem to go, that you don’t know what you’ve got 'til it’s gone,” he sang. I think he was attempting empathy — or the universe was attempting poignancy. Or, maybe he was just high.
I signed my name over and over again on a stack of intake papers, to the point where the letters started to look meaningless. Which was fine, since when the doctor told me the news, everything went blank anyway. “We have good news, and we have bad news,” (Yes, the doctor said it just like that.) “The good news is we know what’s wrong. The bad news is that you have type 1 diabetes. It’s an autoimmune disease with no known cause, and you will have it for the rest of your life."
Type 1 diabetes represents just 5% of the 29 million U.S. citizens affected by the disease. The more common “adult onset” diabetes is type 2, where the body fails to process insulin. Type 1 diabetes occurs when your pancreas, that glandular organ nestled between the stomach and the gallbladder, just inexplicably stops producing insulin entirely. Peak age of diagnoses for “juvenile diabetes” (as it’s called) is 14, but around 15,000 adults (50%) are diagnosed annually.
The day I was diagnosed, I was placed in a large room with five other women, who seemed practically congealed to their hospital beds. As I walked in, I could hear their dry tongues trying to part their lips, and a sucking noise where their cheeks got caught in between their teeth. I crawled into the last bed in the row, and only had a moment to feel disoriented before my blood sugar dropped.
I was signing another stack of intake papers when my fingers began to tremble. The pen became loose in my hand, and my whole body shook. The nape of my neck and my forehead were drenched with sweat, and I began to see stars swarming the corners of my vision.
“Oh, you just need some juice,” a nurse said casually. It was a response of habit to what I assumed was sudden death. “It’s a good thing you got here when you did,” the endocrinologist said, barely looking up from my chart and confirming my worst fear: “You actually might have died.” Ah, right. That other "D" word. Death.
For months, I had denied being sick — despite my yellowed skin, distended stomach, and a body as fragile as fulgurite. My condition was obvious now, as I lay in the hospital bed, but I had spent months ignoring the warning signs: ravenous appetite, unquenchable thirst, and a scale that read a number appropriate for a 12-year-old.
In fact, three months prior, standing in my parents’ kitchen over Christmas break, my dad looked at me quite concerned and asked, “Have you had any lovers who have made you sick?” (I would have melted into the figgy pudding if I could have.) Two months later, my best friend was so disturbed by the rate at which I was drinking water that she actually spit in my glass to get me to stop. “You’re acting insane,” she said. I was so thirsty I drank it anyway.
But, dying? That was a real word a real doctor was using to describe my very real situation. Taking in my surroundings in the ICU, my mortality was apparent and immediate. I was healthy, active, and young. Why was this happening? “We don’t know, sweetheart,” the doctor said, echoing the sentimental shrugs of the scientific community regarding autoimmune disease.
A decade later, diabetes is less dramatic and more calculated — a banal procession of accounting and compensating for carbohydrates and insulin. Every day, I take around seven shots to keep myself in balance — still short of what Lil Jon recommends, but enough for me to party. There is a lump of scar tissue just above my left hip, my most used injection site. It's covered in needle points and burst blood vessels. My pointer and middle fingertips are callused from the prick points where I check my blood sugar, the digits on my meter as personal and damning as what some people see on their bathroom scale.
All the camaraderie and reckless abandon that some people enjoy over food and booze is reduced, for me, to ABC: Always Be Counting. Counting carbs and counting insulin, every meal feels like a calculated risk. In my best moments, I can laugh at it all, happy that science has staved off Darwin's conclusions. But, at worst, diabetes is an undermining pulse of anxiety — a constant reminder that a central part of living could, for me, be deadly.
So, when people joke “We’re all gonna get diabetes” as they plough through a pile of deep-dish pepperoni, with a nod and a wink in my direction, sometimes I want to respond with a single finger. I did not put Crumbs out of business, and it’s frustrating to be the butt of every damn cupcake joke.
And, it makes me feel invisible. A lady with an invisible disease with no cure, no cause, and no pause button — an invisible ball and chain in the form of insulin and a meter, and no decent tax breaks to speak of.
But, here’s the thing. Like most people, what I want is health and the ability to say “all is well” at the end of the day. And, anyone can twist like a corkscrew and fight against what they’ve been given. That is, until the day they say “screw it, this lot is mine for life, and I’m going to focus on living." Because that is the real cure.