Part 2. For Part 1, click here.
Before I continue, one disclaimer: a lot of this narrative has and will discuss the “shame” of getting diabetes. First off, let it be known that this entire blog is comprised of my own personal opinions, and would never claim to be objective fact. The shame I describe here is perceived, subjective, and most importantly, not an opinion I hold anymore. In order to relate my experiences honestly, I find I have to own up to the myriad emotions that this experience created. Today, I feel very, very strongly that there is nothing inherently shameful about developing diabetes. Nothing. At all. Societal pressure and expectation is a powerful, disarming force, and if I have any wish for this blog, it’s that my journey can illuminate some of the inherently problematic and challenging ideas that society seems to have fixed about chronic illness, weight, and health.
Anyway, where we were? Ah yes. Irony…
Ah, the irony. The delicious, stupid, ridiculous, storybook, couldn’t-have-written-it-more-obviously-if-I-tried irony. I had stumbled upon to every chronically overweight person’s dream: unexplained, significant weight loss despite increased calorie intake (JUICE JUICE JUICE) and decreased activity. But instead of being thrilled, I was miserable. And scared. It was too much – I felt like King Midas – TURNS OUT BEING ABLE TO TURN ANYTHING YOU WANT INTO GOLD ISNT ACTUALLY AWESOME. SIMILARLY, TURNS OUT LOSING A TON OF WEIGHT WITHOUT TRYING FOR AN UNKNOWN, FRIGTENING AND DANGEROUS REASON ISNT ACTUALLY AWESOME.
Between mid-January and mid-February (and perhaps in even less time), I had unintentionally lost 18 pounds. Seven days later I had lost nine more. I should have been rejoicing from the rooftops. Instead, I felt horrible, was carrying a host of insane symptoms, and was at the point where denial was no longer an option.
The depth of my denial was deep, though. Only in writing this up now do I remember another nasty moment:
It was Tuesday when I went to the eye doctor and took their determination that my vision was fine as outright proof that I couldn’t have diabetes. I forget, though, the event of the Sunday two days before – I woke up, dressed, and left the house to meet a friend for brunch. I remember standing on the very crowded subway and feeling increasingly sick to my stomach. I had the vague thought that I should probably sit down, realized there were no seats available so I would have to remain standing, and then, suddenly, I was opening my eyes, laying on the floor of the subway, while a concerned woman nearby gestured to me to take her seat. I finished the ride seated, with my head between my legs, got off the train at my stop, bought a bottle of water, drank it, and made my way to the brunch restaurant (where I proceeded to pee out all the water almost instantly). And promptly forgot about the experience. Passing out on the train is like a rite of passage all New Yorkers go though, right?
Anyway, flash back to Wednesday: I’m back from the eye doctor and staring at a 184 on the scale, feeling truly scared for the first time in this whole ordeal and realizing that I have to do something. I made up my mind to call the doctor, but I was so exhausted at that point, so mind-numbingly exhausted that before I could even consider it, I stumbled into bed and slept for the next 9 hours. I woke up around 8 pm, ate dinner, and collapsed back into bed. I woke up again at 7 the next morning, and, just to make sure that, with my dilated eye-doctor eyes, I hadn’t hallucinated the number, I hopped back on the scale.
I had done nothing – literally nothing – but sleep for the past 19 hours (with a one-hour break to PUT FOOD IN MY BODY) and had lost 2 more pounds.
It was time to call the doctor.
A 7:30 AM call to my doctor’s office with a quick description of my symptoms was enough to get me an appointment a few hours later. I did a urine test and gave some blood, then explained to my doctor what had been going on and my fear – that I had diabetes. She smiled, assured me that that was extremely unlikely, and had me step on the scale. She rejoiced in the weight loss, insisting that I must have been doing something different, or made small changes without realizing it.
It was almost possible to get lost in her optimism, to believe her. But she hadn’t been living in my body for the last month. Sometimes, even in the midst of the most epic denial, a part of you, deep down, just knows something’s wrong. It doesn’t mean you’re ready to hear it, but you still know it. And so I insisted. And she smiled, assured me I was most likely wrong, and left to review my urine test.
And didn’t come back for a good long while.
And when she did, she was no longer smiling.
“Oh…” she said. “It’s diabetes.”
Yes, diabetes. It’s diabetes. You’ve got it.
I remember so little else about the next few minutes, and the few hours after that. I remember a nurse coming in to “teach” me how to use insulin (like I was in a position to “learn” anything at that point), and injecting some into my stomach. She said “Doesn’t hurt at all, does it?” as though she were singing the praises of a hair-remover you’d see in a late-night infomercial. As you might imagine, I was in shock – my body simultaneously cringing at a revelation it had long seen coming and absolutely baffled by something it never could have expected.
Also – what the heck was insulin? It was a word I’d heard before, along with “diabetes” and “blood sugar”, but the mechanism of these strange things was mystically unknown. Someone handed me a glucometer (although at the time I had no idea what it was) – my finger got pricked and squeezed until a nice fat drop of blood came out (and wow, man, that hurt! … so THANK GOD no one told me then that I’d be doing it 5-25 times a day for the rest of my life; I probably would have combusted), and other things, tests, paperwork, counsel.
I have no idea what the plan was, at that point, for follow up. Was I going to see her the next day? Was she going to get me in to see an endocrinologist? It doesn’t matter – things were going to take a few more turns before the day was out.
Most of all, I remember my doctor looking sad – just so damn sad – but assuring me “we were going to figure it out”.
(Sidebar: I happen to love my doctor, and I don’t begrudge for a minute her initial optimism in this appointment. Looking back, it was highly unlikely I had developed diabetes. I had, but that doesn’t change the fact that the likelihood was low.)
Mostly I remember thinking – Jesus, if this is what this me getting diabetes does to my doctor, what is it going to do to my parents?
The first very serious boyfriend I ever had broke up with me after a few years together when we were at separate colleges. It happened at about midnight, over the phone. My biggest memory of the event was the sudden overwhelming need to tell everyone – everyone – that it had happened. For some reason, the idea that people in my life would be going about their evening thinking I was still in a relationship when I was not was unbearable. It’s the shame that comes from failure – from a screw up – (and doesn’t being dumped feel like failure? Proof of your failure as a dateable person, a desirable one?) – a shame that, for me, demands public accompaniment. The desire for others to judge you, to punish you with their judgement, confirm your worthlessness. I think I literally sent a group text to everyone in my address book – “I got dumped”. It was critical, critical for people to understand that I was no longer the coupled person I’d been a few moments before. I’m a screw up, you have to know that I’m a screw up, I can’t handle you not knowing that I’m a screw up and thinking I’m not a screw up, I’VE FAILED I’VE FAILED PLEASE KNOW THAT I’VE FAILED.
And on that Wednesday, February 26, 2014, once again, I needed to mortify my flesh to those who loved me most. Now that it had happened, that it was official, I couldn’t bear even a second of my parents, my sister, not knowing. And so, I told them – well, I cheated, telling my mom and having her spread the news to everyone else – father (ugh), sister (ugh), Uncle, Aunt, Cousins… (ugh) – all those people, linked tightly enough to you by blood that they are entitled to know these sorts of private, shameful revelations first.
I’VE FAILED I’VE FAILED PLEASE KNOW THAT I’VE FAILED.
The result was, if possible, worse than I’d feared – not judgment or anger but more sadness – this unbearable sadness. To me, diabetes was a representation of my complete and utter failure as a human being, my failure to take care of myself, to keep myself healthy, to keep myself thin. It was shame and disgust, but that’s about all it was. I hadn’t actually considered what it might mean to have to live with the disease. But to my family, my parents, grown ups who had watched their parents struggle with Type 2 diabetes and watched its crippling effects, it was not a symbol but a curse – one that would condemn me to a lifetime of overwhelming diligence and, if and when I failed, suffering.
But I didn’t know any of that yet. I didn’t know much of anything yet, except that I had diabetes. In a daze, I travelled to my parents’ house, weighed down by the burden of my news as well as the diabetic supplies that had been foisted on me at the doctors office. Chief among them was a blood glucose tester that I knew I needed to use, for the vague purpose of “testing my blood sugar” – whatever that meant.
My privilege as storyteller is that I can look back on this day which was, at the time, completely baffling, and provide relevant perspective gained from 6 months of experience. So let’s take a brief break from the narrative and learn some diabetes facts, shall we?
DIABETES 101: THE MECHANISM OF BLOOD SUGAR
When you eat food, your body does the work of converting that food into energy. When you eat any food that contains carbohydrates (which includes many things, like breads, grains, sugar, vegetables, fruits, dairy) your body converts those carbohydrates into glucose, which floats around your bloodstream waiting to be directed to the cells that need to use it for energy. How does it get directed? With the help of a hormone called insulin. Your pancreas, a nifty glandular organ underneath your stomach, has these little beta cells in it, which excrete insulin according to your needs – basically, your cells sense how many carbohydrates you’ve eaten and know exactly how much insulin to make in order for you to be able to process those carbohydrates (which are now floating around as glucose) and use them for energy.
The measure of how much glucose is floating around your bloodstream at any given time is called your “blood sugar”.
In a non-diabetic human, blood sugar tends to waver between about 70 and 100 mg/dL. As you’d imagine, after you eat, it can go up – usually no higher than 140 mg/dL. By that point, your pancreas has usually made enough insulin to direct the glucose to your cells and bring your blood sugar back down. Your doctor can tell if you’re diabetic (or “prediabetic”) based on what your blood sugar number is – if you’ve been fasting they expect the number to be under 100. Between 100 and 125, you’re considered “prediabetic” (borderline for type 2 diabetes – i.e. your body is losing the ability to process glucose as efficiently). Over 125 and you’re diagnosed with full-blown diabetes.
Glucose can be measured one of two ways – via blood or urine. Blood is more accurate. It’s critical for diabetics to test their blood sugar often, especially if it’s wildly out of range, because if it goes too high (or too low – more on both later), there can be some very dangerous health implications.
So: 70-100: normal. 100-125: pre diabetic. Over 125: diabetic.
That morning in the doctor’s office, my urine revealed a glucose that was an even 500.
So around 8:00 that night, standing in my parents’ kitchen, I had my first experience with lancets and glucometers – the home testers that allow diabetics to know approximately (because they can be pretty inaccurate at times) what their blood sugar is. You prick your finger, squeeze out a nice little pile of blood, and touch it to a little strip inserted into the glucometer that produces a blood sugar reading in 5 quick seconds. The lancing device (“finger pricker”) is a small gizmo with a lancet at the tip that is spring loaded to jab at your finger, creating a minuscule cut that you can use to obtain a blood sample.
I was a diabetic now, so I had to test my blood sugar. Steeling myself, not allowing myself to indulge in the pain or grossness of what I was about to do (“You’ll get used to it!” the nurse had told me at the doctor’s office. “I DON’T WANT TO HAVE TO GET USED TO THIS!” I wanted to scream back. Instead, I think I probably cried.), I stuck the lancing device to my thumb and pressed the button, releasing the spring loaded pricker.
It hurt. Rushing to make use of the blood that was quickly pooling at the tip of my thumb, I shoved a glucose test strip into the glucometer and dipped it against my hand. I had no idea that the test strip actually has a small opening at the end that, when the blood drop is held to it, sort of sucks the blood in, allowing the machine to get a reading. Instead, I dabbed the (useless) back of the strip all over my bleeding thumb, getting nowhere. The glucometer patiently waited, revealing nothing. And my thumb began to clot.
Aggravated, I tried to ignore my nerves and pricked another finger. Wow. It hurt. I dabbed it around uselessly again; nothing. Again, it clotted, again, I re-pricked. Six or seven pricks later, and a ton of wasted test strips later, I had gotten nowhere.
At that point, my dad walked in, home from work, and surveyed the scene.
And I watched it all hit his face at once.
He said nothing.
He didn’t have to. The spectacle I must have presented, bleeding, surrounded by test strips, failing at my first ever task of living with diabetes (his 26 year old daughter, living with diabetes). I’ll never forget the look on his face in that moment. I imagine he probably won’t ever forget the look on mine, either.
For what it’s worth, I did finally figure out the glucometer, but the excitement was short lived (and tinged with such bitterness it’s probably not fair to call it “excitement”). Because a few short minutes after that, my doctor called. It’s never a good sign to get a call from your doctor after 9 pm at night. Apparently, the blood tests she’d sent out from my visit earlier in the day had come back – and they weren’t good. And here I was, thinking it couldn’t get worse than “diabetes”…
“There’s a high level of ketones in your blood,” she told me, introducing what seemed like my 1,000,000th new word of the day, “Higher than we’d expect for your current glucose level.”
Uh huh. Right. Not much good today, then. However, I had apparently eclipsed my current level of “not good” and entered a new stratosphere of “not good”. My first “not good” – diabetes, meant shots and glucometers and the promise of more confusion and changes to come. But this new level of “not good” – ketones – meant that I had to get to the emergency room.
“Wait, now?” I asked.
What? What was even happening?
“Now,” she said. “I’ll call them and tell them to expect you.”