Pincushion

It was only our first date when Misty began to suspect my chakras were out of whack. She was adamant that if I did my research, I’d discover an ancient Chinese treatment or a secret rainforest plant that would end my insulin dependence. 

“There’s a lot that doctors don’t want you to know,” Misty said as she watched me jab a syringe into my stomach. “A woman in my Yoga class cured her diabetes. I can find out what she did if you want. I think she went Keto.”

“Type 2,” I said.

“What?”

“She had type 2. It’s occasionally reversible. But I have type 1 — an autoimmune disease. Makes up maybe five percent of cases. There’s no cure.”

“That’s just what Big Pharma wants you to think. I bet if you went to Southeast Asia, you’d discover people curing diabetes naturally. You’d be surprised what’s out there.”

If anything was “out there,” it was Misty herself. But she wasn’t alone. I’d heard these suggestions before. (If I ruled out everyone who has misconceptions about diabetes, there’d be no one left to date.)

Besides, I can keep up with the best of them when ranting about pharmaceutical companies. After all, insulin manufacturers charge Americans close to $300 a vial for what only costs a few dollars to make. But, despite the extortionate pricing, without insulin, no amount of acupuncture or plant medicine will save me. Nor will any other treatment tried in the past three thousand years: powdered herbs, barley water, opium, rancid animal food, tobacco, warm clothing, cold baths, massages, and on and on.

Insulin is the only thing that works, but it’s not a miracle drug. Because it isn’t a drug at all; it’s a hormone. It took until 1922 for scientists to discover its role, but it’s been around for over a billion years and is found in every mammal on Earth and many fish, too. It’s even shown up in fungi. It’s hard to get more natural than that.

True, the insulin I take these days is genetically engineered and fermented in a vat. But I didn’t admit it to Misty. And since she was a card-carrying member of PETA, I certainly didn’t tell her how insulin’s discovery involved testing on dogs, nor that the insulin prescribed at the time of my diagnosis was harvested from baby pigs. I don’t like to think about that stuff, much less argue about it, so I merely said, “Trust me, I can’t live without it.”

I didn’t know any of this until my diagnosis — a mere sixty years from insulin’s historic first injection. At sixteen, I’d never even heard of diabetes. But I remember how I felt.

Despite an unquenchable thirst that had me guzzling gallons of liquids daily and waking up several times a night to urinate a sticky brown piss, it took me a while to acknowledge something was wrong. Clinging to the last vapors of youthful invincibility, I mistook my creeping symptoms for an adolescent phase. The sort of changes teachers warned kids about: “You might feel out of sync with your body sometimes. It’s all a part of growing up.”

I didn’t realize I had lost twenty pounds until a friend noticed it. I laughed it off as the classic “heartbreak diet” since I’d recently been dumped. And who knows? The stress of a teen love gone bust might have been a trigger. But I’ve given up on looking for something to blame.

However, Misty wanted an answer. “Did you eat a lot of sugar as a kid?”

“I’m American,” I said. “Of course I did. But that’s not why I’m diabetic.”

Regardless of what caused it, my thirst became unbearable. I couldn’t make the fifteen-minute walk home from school without stopping at a grocery store to buy a two-liter bottle of something — anything — and finishing it within minutes. My bladder dribbled urine like an overfilled punchbowl as I waddled home to piss it away in a tea-colored surge.

It was a chilly Saturday morning in February when my mother interrupted breakfast to announce she had made an appointment for me to see a doctor. Until then, she hadn’t mentioned noticing anything wrong. Not to my face, anyway. I had been pushing the bounds of my independence and was rarely home. She might’ve thought I was on drugs. I may have appeared that way. My brain had grown foggy, and I was slow to react.

“Doctor? When?”

“Today.”

I probably would have whined about doing anything with my mother at that age. However, waiting out my symptoms wasn’t working, and my powers of denial had started to crack. So, after a quick trip to the toilet, I got in the passenger seat of the family station wagon without a fight, and we headed to see the pediatrician.

His practice was in a split-level suburban home, similar to my family’s house at the time. It was cluttered with magazines, games, and toys — all targeted at kids much younger than me. There were a few magazines aimed at mothers, too. Good Housekeeping, McCalls, that kind of thing. But nothing to distract a kid on the cusp of being aged out of the pediatrician’s practice. It didn’t matter. Even if there had been a copy of Rolling Stone, my eyesight had become too bleary to read. As it was, I thumbed through a copy of Ranger Rick, squinting at pictures of birds and turtles until the doctor called my name.

He measured and weighed me: Six foot one, a hundred and thirty-five pounds. I can’t recall if he took blood, but he handed me a container and asked for a urine sample. I didn’t know what he was testing for, but based on past visits, I figured he might give me an antibiotic prescription and send me on my way.

However, when he saw my test results, the doctor spun around in his chair and urged my mother to get me to the hospital as soon as possible. “I mean, right now.” From the look on his face, he was surprised I was still alive. Knowing what I know now, I am too.

And what I know now is this: In an inexplicable act of betrayal, my body’s immune system destroyed the cells in my pancreas that make insulin. Glucose is the body’s primary energy source, and insulin is a key that allows it into cells. No key, no entry. As the glucose builds up in your bloodstream, your kidneys dump as much as possible into your urine, and you become dangerously dehydrated. Meanwhile, denied access to glucose, your body enters starvation mode. Your liver breaks down fat as an alternative. Acids called ketones are a by-product of the process. And when your body produces too many too fast, they rise to dangerous levels leading to a life-threatening condition called diabetic ketoacidosis. It needs treatment right away.

Suddenly, everything was moving fast — except for me. I felt as if I was trudging through a swamp on the surface of an asteroid. 

Back in the station wagon, I leaned my head against the window, nauseated, weak, and confused.

The boat-sized Chrysler wagon was Honey Gold inside and out — with faux wood panels along its sides. We’d used it for many family road trips, and it was a comfortable ride. Even when speeding toward a hospital with acidic sludge in my veins. Nestled inside, I struggled to stay awake.

The world seemed to take on the same hues as the car. Ochre, umber, orange, like an old photograph where the blue had faded. Except I was doing the fading — eating myself alive until I was as brittle and spindly as the winter branches of the bare elm trees we passed along the way.

There was little wait time at the hospital. Two attendants helped me onto a gurney and wheeled me into Intensive Care. While one nurse’s aide took my vitals, another drew blood and then tethered my arm to a bottle of saline. The bloodwork revealed my glucose level to be a staggering 800 mg/dL. Although the number didn’t mean anything to me at the time, one of the nurses said it was ten times what it should have been. “The highest number I’ve ever seen from a person still walking and talking,” she said. Except I wasn’t walking; I was stretched out on a gurney. And I wasn’t talking, either. Just lying quietly, trying, and failing to take it all in.

Soon, I received my first insulin injection. The small orange-capped syringes were just one more thing to poke and prod me with, and I didn’t realize their significance. In fact, I was so clueless that even after a few days of receiving the shots, I asked a nurse how much longer I’d need them.

“Every day from now on,” she said. “Like brushing your teeth.”

Toward the end of my week-long hospital stay, the nurse taught me to give the injections to myself. First, she had me inject saline into a tangerine. Just poke the syringe into the fruit and depress the plunger. Easy. Next, she had me inject saline into my thigh. “Not so bad, right?” Finally, she handed me a bottle of insulin. “You ready?”

I’ve been injecting insulin ever since. Multiple times a day with a syringe — or an insulin pen when they became available. Or, in the case of the pump I use now, all day, every day. Way more often than I brush my teeth, that’s for sure.

The only insulin available to me at first required a very rigid eating schedule, and I had to eat a specific number of carbohydrates every two to three hours. A nurse taught me when to inject when to eat, how to count carbs, calculate my dose, and what to do when I screwed up. At first, I was only allowed eighteen-hundred calories per day using an exchange plan identical to my mother’s Weight Watchers program. They kindly increased it to twenty-four hundred calories the day I left the hospital. “We don’t want you starving,” the doctor said. And with two vials of insulin, a handful of syringes, and a pamphlet or two, they sent me on my way. “Good luck, kid.”

Even after gaining back the weight I’d lost, I was still skinny. Being given such a restrictive diet felt punishing and left me perpetually hungry. I went through a long phase where I’d eat a cookie just for the taste of it before spitting it into the garbage. But it wasn’t satisfying, so I started swallowing the cookies, promising myself not to do it again, secretly binging all sorts of forbidden foods and bargaining with myself like an addict. Writing lies in the logbook that I was expected to keep. Making up numbers for doctors and dietitians. “I don’t know why my readings are so high; I’m doing everything I’m supposed to.”

These days, newer fast-acting insulins allow more flexibility. And as long as I take enough insulin to cover the carbs, I can more or less eat whatever I want. But the shame around certain food choices — especially when I miscalculate the ratio — is deep-rooted and hard to shake.

Another skill I learned in those early days was how to monitor my blood glucose at home. It entailed passing a test strip through a stream of urine. After thirty seconds, I’d match the strip’s color against a chart on the side of the container. The chart ranged from a deep brown to bluish-white. The darker the color, the more excess glucose in my pee. It was messy, cumbersome, and only marginally more accurate than a test developed in ancient India: If a person’s urine attracted ants, that person was said to have madhumeha. Honey urine. Suitable for making a diagnosis, maybe, but worthless in making up-to-the-minute treatment decisions.

It was a couple of years before a test became available using a fingerstick, test strips, and a handheld meter — a quantum leap in providing relevant numbers. I relied on it for decades, but now use a Continuous Glucose Monitor — a small sensor that transmits blood glucose readings to my phone once every five minutes. Another vast improvement — assuming you’re either rich or insured.

But regardless of how accurate the means of testing are, there are so many challenges in mimicking an essential organ it’s impossible not to waver outside the target from time to time.

Low blood glucose is the most immediate threat. It’s when a miscalculation leaves too much insulin in your system. As little as a few drops more than you need can be lethal.

Misty witnessed a close call at the start of our first date. 

“What’s that?” she said as I pulled out my meter.

The gaggle of diners seated in the booth behind me was making a racket. I was irritable and wanted them to shut up. I wanted to crawl under the table or run away. To somehow disappear. What I didn’t want to do was pass out across from someone I’d just met while seated in a restaurant full of strangers. Let’s face it; I didn’t want to pass out at all.

“I need a minute,” I said.

The lighting was dim — perfect for a romantic first date, but bad for trying to see as I pulled out a test strip and slid it into the meter. I lanced my shaky finger and squeezed out a drop of blood. “Insufficient sample,” the machine spit back. My fingers were calloused, and the lancet hadn’t gone deep enough. I tried again. The clinking of glasses and silverware grew louder and louder. A fuzzy blue tunnel danced around the edges of my vision. Sweat began to pour. My shaking leg periodically knocked the table, jostling the water glasses. Half of my anxiety came from worrying about what would happen if I did pass out, and the other half from my body’s desperate attempt to right itself with a flash flood of adrenaline. Squeezing my fingertip after the second prick caused a squirt of blood to spray my glasses, but I got a reading: Fifty-six.

“Are you okay?”

Fifty-six is dangerous, but the antidote is simple: sugar. And I carry glucose tablets wherever I go for situations like this. I would have eaten a few as soon as I started to feel shaky if I hadn’t mistakenly attributed my symptoms to first-date jitters. I ordered a Coke-a-Cola to speed things up.

“I thought diabetics couldn’t have sugar.

“It’s complicated,” I said, not feeling well enough to explain.

It took about twenty minutes for the fight-or-flight feelings to subside. At that point, I was exhausted and just wanted to go home, but I stuck it out. Mopped my brow with a napkin and joked about dramatic first impressions.

But the scene only steeled Misty’s conviction that I needed to get off insulin. “How can any of this be good for you?”

I quickly pointed out that too much of anything can kill someone — even water.

She shook her head. “I could never be diabetic,” she said. “I hate syringes. And all the poking and the blood.”

“Never say never,”’ I said. “Health is a fragile privilege, and you never know what you can do until your life depends on it.”

Things were a total guessing game before the fingersticks were available. But once they were, the desire to avoid these close calls caused me to become obsessive about testing. Not necessarily a bad thing — or at least it wouldn’t be if each test strip didn’t cost as much as a dollar a pop. But the heightened anxiety throughout a day got in the way of an enjoyable and productive life — testing before you eat, after you eat, when you feel funny, or when you feel fine, just to be sure — constantly wondering and worrying, trying to calculate food portions and carb counts. The fear, shame, and frustration of getting it wrong.

My Continuous Glucose Monitor helps considerably. With constant readings, I can see trends, predict when I’m about to go low or high and make corrections before things turn ugly. But it isn’t perfect and still requires a lot of attention.

Sometimes I think to myself, screw it, I don’t want to risk a low. So I give myself a little breathing room by letting my readings run high, figuring I’ll deal with the consequences down the road. Unfortunately, even slightly elevated blood glucose can lead to severe complications given enough time. And the distance between where I stand now and “down the road” grows shorter every day.

For instance, the nerve damage to my feet, which started as a mildly annoying tickle, now feels like I’m wearing a permanent pair of wool socks. And the vision changes that I first noticed as a small gray spot eventually led to over a dozen treatments to keep my retinas from detaching. Considering all the excess glucose they’ve filtered, my kidneys are at risk but doing okay. Thankfully, I’ve managed to stabilize or at least slow the progression of these and myriad other complications. But they all need monitoring, and even then, there are no guarantees.

Unfortunately, you can’t monitor all the risks. And not all present themselves quite so gradually.

Such as the sudden thunderclap headache and total body numbness I experienced while reclined in a dentist’s chair. A swirl of psychedelic patterns crisscrossed my vision before I lost the ability to make sense and fell into a crushing blackness where time ceased to exist.

“You’re awake,” I remember a nurse’s aide saying as she approached my bed. “Do you know where you are?”

I was still half-submerged in a soupy blur of delirium and wasn’t initially sure. But I soon learned I was in the ICU twenty-four hours after suffering a form of stroke called a subarachnoid brain hemorrhage — bleeding in the area between the brain and the tissues that cover it.

Thankfully, I defied the odds and dodged the worst possible outcomes — coma, paralysis, death.

For some reason, the neurologist hesitated to blame diabetes directly and simply called it an anomaly. “Maybe your blood pressure spiked. Do you have a fear of the dentist?”

“I do now.”

However, since it’s well documented that people with diabetes have an increased risk of stroke — and "fear of the dentist" is rarely mentioned as the cause of one — the experience left me with a renewed determination to be even more vigilant with my control. If that was even possible since neither extreme — high nor low — is necessarily due to loose compliance.

Taking insulin isn’t like taking a pill. It’s not the same dose once or twice a day. It’s based on an algorithm that requires endless micro-adjustments. And guessing what those adjustments need to be is a black art. How many carbs are in that Massaman Curry you ordered? It comes to your table, and you take a guess. If you’re lucky, you get close. If not, and your blood glucose heads for the stratosphere, you do a little more calculus to figure out how much insulin it will take to correct it without taking too much. And that’s just food. Other factors influencing your needs include the time of day, physical activity, stress, alcohol, a cold, the flu, etc. Or a million other constantly changing mystery factors that come with trying to live a vibrant life in a chaotic universe. By some estimates, people with type 1 diabetes make a hundred and eighty treatment decisions daily. I don’t know if that’s true or not, but it certainly feels that way sometimes. And with no vacation, no reprieve, it’s easy to burn out.

And so, later in the night, when Misty asked if I was up for an after-dinner drink, it felt like one decision too many.

There were no real sparks between us, and I suspected she was still bent on trying to cure me — or at least lead me to a life-altering epiphany that would confirm her beliefs. But since living with a chronic condition can be alienating, and I had been striving to be more social, I didn’t think too hard about it and just said, “Why not?”

“Where should we go?” she said as I struggled to calculate the math on the check.

“I don’t know.”

“You’re so indecisive,” she said. “You must be a Libra.”