Ten years ago I was a student on my own in NYC. The price gouging of insulin in the US was just beginning. I have been type1 diabetic since the age of twelve. When I think of the struggles I’ve gone through in the past twenty years just to stay alive, a few memories stand out like shards of glass: clear, pointed, and bloody. This is one of those shards…
I am twenty. My alarm wakes me at six to get ready for class. It wakes me at six to begin the strict and unforgiving regimen that keeps me alive.
Before anything else I test my blood sugar – blearily, groggily, automatically. The meter is a crappy drug store brand. I miss my old meter but I can’t afford to use that one anymore – the test strips were $75 a bottle. $375 a month. $15 a bottle for this one.
Slide the strip into the meter and prick my finger. This meter requires more blood than my old one, so the poke has to be deeper, and I squeeze until a gory crimson pearl forms on my fingertip. The dull lancet hurts: you’re supposed to change them out after each use, but I change it out more like once a week, because a box of lancets is $20, and who can afford that?
This is the first of between 8-20 tests I am supposed to each day: when I wake up, before and after each meal and snack, before, during, and after exercise, before bed, any time I feel “off”, and maybe a middle of the night check because I’m afraid of dying in my sleep.
Dead In Bed Syndrome is the number one cause of death for young type1s.
Truth be told, I don’t test as much as I am supposed to anymore. I can’t afford that. Once, when I tried to refill the script for my strips a week too early, the pharmacist told me coldly, “You’re testing too much.”
“I’m type one,” I replied, nonplussed, thinking he should recognize the obvious implications of that statement.
“You test four times a day. Prescription for four times a day,” he said patronizingly through a thick accent.
In a rare moment of assertiveness fed by desperation, I slammed both hands on the counter, “Do you even know the difference between type one and two?” I asked, “You’re not a doctor! I’m testing exactly as much as my doctor told me to.”
That was when I realized it was the insurance company I must defer to in matters of health, not my doctor.
During class in the morning I feel hazy. Prof gets a bit blurred around the edges. Can’t make out the diagram of a neuron projected on the screen.
My meter beeps quietly when I test, and the bro next to me grunts, “Do you have to do that now?” having assumed I was fiddling with a phone or PDA. I crumple and say nothing. Time to calculate a correction.
My entire life is math. I calculate how much insulin I need to correct – to bring my blood glucose down to the normal range. I calculate how many grams of carbohydrate are in anything I eat, and how much insulin I’ll need to compensate for them. I subtract for the insulin that’s still in my system. I subtract for any exercise I’ll be doing. I add for lack of sleep. I add for emotions: for anger, for sadness, for fear. I add for hormones: menstrual, cortisol from the stress of school, of working two jobs, and ironically, from the stress of not being able to afford my insulin.
Surreptitiously under my desk, I draw the insulin up into a syringe and jab it into my belly. I don’t swab with alcohol first, because I can’t afford alcohol swabs. The shot hurts despite the needle being a hair’s thin gauge and only a half-inch long. It hurts because it is dull from overuse. Insulin syringes are single use only, but I can’t afford that. I put the biohazard orange cap back on and save the syringe for next time as another bruise forms on my belly. My belly is a constellation of pinpricks and bruises.
I got into the habit of skipping meals to save money. I’d contemplated going low-carb, not because it’s trendy or healthier or better for type1 diabetics (it’s not), but because low carb means less insulin – I could save money! But the diet itself is expensive, so that evening I start boiling water for plain oatmeal. Five bucks for the extra large carton; a meal a day for a month! I could eat like queen if I didn’t spend all my money on prescription copays. But I remind myself as I stir my soggy beige repast that I am lucky to even have insurance.
I am one of the lucky ones, I think, as I roll my vial of insulin gently between my palms to warm it and mix it when it slips from my hands and falls to the floor. I am one of the lucky ones. It shatters on the rust colored tiles and the reek of the hormone that keeps me alive (imagine concentrated Eau de Band-Aid) surrounds me like the Worst Cologne In the World.
The puddle on the floor is a week’s wages.
The puddle on the floor is worth half a month’s rent.
The puddle on the floor is worth two months’ food.
The puddle on the floor is my life.
I sink to the floor next to the puddle and sob. And I am one of the lucky ones.
Some people let themselves go into DKA (Diabetic Ketoacidosis, a near-death state) so they can be taken to the ER. There they will be chastised for not taking their insulin – the term doctors use is “non-compliant”, like we’re parolees failing to meet the terms of our release. Like we’re snorting sugar like blow. But at least with the contempt and the upbraiding comes a free vial or two.
For some this is the only way they know how to get insulin; each incident of DKA doing just a little more damage to the tiny blood vessels that feed their kidneys, to their eyes, their nerves, to their hearts, to their lungs. If they don’t die this time, they’re gambling with their future.
But I’m still a coward. It’ll take another few years before I get pushed far enough to boldly (stupidly) play those odds myself. This time…this time, after three hours of sobbing, I walk to the pharmacy.
Swollen face and red eyes. The cacophony of traffic and sirens and catcalls blend together into aural soup. The buildings, traffic, people around me blurring together too, unreal and waxy like a swirl of melting crayons. I’m not truly seeing or hearing: I am mathing.
What if they won’t refill my prescription early? How much food can I afford when the currency is units of insulin? How long will I last? Maybe a few days? Maybe a week? I don’t actually know exactly how long I’ll live without it, but I’ll start feeling the effects within hours: my vision will blur, my thirst will become unquenchable, nausea and hunger will battle for reign supreme over my tummy. I’ll lose weight rapidly; I have an athletic physique now, but that will disappear almost overnight. I’ll get weaker. I’ll be winded walking a few blocks or climbing a flight of stairs. My muscles will twitch. I’ll vomit. I’ll faint. I’ll hyperventilate as my lungs desperately try to expel the toxins building up in my blood. My fingers will wrinkle until my hands look like a striga’s. My heart will pound. Then something will give way. Maybe a heart attack first. Maybe suffocation. My organs will fail in one order or another. I will die. And it will hurt.
Maybe I can last long enough to scrounge up the money – borrowing, working extra shifts, saving: hey, I think darkly, “If you can’t afford to eat, at least insulin will last longer!” Silver fucking lining.
The florescence of the drugstore rescues me from my mind. I head straight to the pharmacy, and to a pharmacist I’ve never met before. Thank god there’s no line. She is a woman in her forties with wavy auburn hair. In her white coat, she is the first thing I see with clarity. She is pretty. She has freckles.
I ask for a refill. I tell her I broke my bottle. “You’re not due for a refill for a month,” she says.
“Please?” I say…I don’t have anything else to say. I don’t have anything else at all.
She consults her computer.
She makes phone calls.
I pace and try not to look at the fitness magazines, with their diet and exercise advice. I try not to think about how people micromanage their nutrients, count their calories, and run, run, run from the Reaper. I will never be healthy. I am what they fear. I am what they are running from.
The pretty pharmacist tells me there’s nothing she can do. Insurance won’t fill it for four more weeks.
I don’t cry because I have no tears left, but I don’t know what to do, so I collapse against the wall in desperation, my arms wrapped around me, trying to think and trying not to think.
How can insulin cost so much? How can they refuse me when my life literally depends on it?
How can my life be worth so much and so little at the same time?
I don’t know how long I stand frozen (or am I shaking?), against the wall when I feel the hand on my shoulder. I look up at a halo of auburn hair, but I can’t meet the eyes that look at me. She slips a refrigerator-chilled box into my hand, inside, a vial of insulin. “Don’t tell anyone,” she says, and walks away.
