A Life Hunger, or A Decade with Type 1 Diabetes

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10 years, the doctor said on the day I was diagnosed. There will absolutely be a cure within 10 years.

There is a quarter-sized indigo bruise to the left of my bellybutton, from the insulin shot I took this morning, because I decided to eat a bowl of cereal. What this means is, there is no cure. Not yet.

Today, I’ve had type 1 diabetes for one decade.

For several months after my diagnosis, my mom and I, every night, set an alarm for 3am to make sure I was still alive and would remain so until morning. Sometimes I would go to bed and my last thought would be, I hope I wake up. I was haunted by the horror stories of a bluntly named quiet death of people with type 1 diabetes: Dead In Bed Syndrome. I was 14 years old; I felt very young and very old and I still do.

There was an innocence that I lost before most of my peers, one of invincibility and frivolity and a certain freedom. I learned quickly that the things we think will never happen to us can absolutely happen to us. That no one is safe, ever, from anything. This truth is just terrible, isn’t it? And yet, so it goes.
Bear with me.

The doctors told me something else would happen 10 years after my diagnosis: I would probably start to see complications. The list of potential complications is very long and very bleak. Not right away, the doctor assured me. Not on the day (today.) But sometime. Sometime.

This ten-year benchmark has stuck with me, and I have dreaded it since I was that tiny, barely-teen sitting in a hospital bed. For most of the past decade, today has been a dark space in my mind, a place with something very real to dread. I couldn’t help but feel like arriving at it meant a safety net would be pulled out from under my feet; that I would suddenly need to strap on a Life Seatbelt. It wasn’t until very, very recently that I realized there was never a safety net, not in those first 10 years of diabetes, not before that, in my childhood, and not now. There is no Life Seatbelt. I turned 24 years old this week, and there is only life itself and my enduring hunger for it.

Every time my blood sugar is too high or low or my fingertips are numb or floaters pass my eyes, I feel all of my own fire and fight. I’ll do anything. I’m playing a game with rules that shift like the wind. I’m trying to imitate my body’s worthless pancreas while fully aware that I will never live up to it. All of this will never be enough. I am very tired and it is very endless. Yet I do it anyway, because if I don’t, I will die. And I want to live.

The most important thing I’ve learned in the past decade is this: life will bring you to your knees and you must get yourself up, because that is what there is to do here, and it is so glaringly worth it.

You might struggle to pay your bills.
Your heart might get shattered.
You might lose your mother or your brother or your friend.
Doctors might tell you that you have an autoimmune disease without a cure and they might hand you an orange-capped syringe and a cold vial of insulin.

And if they do, you must stick it in your soft arms and stomach and thighs seven times a day, every day, forever, because it means you can continue on with the rest of it. Count the carbs. Prick your tender fingertips. Take the shot even when it burns like wildfire. Take care of your wounded self.

I know how hungrily enamored I am with life by seeing it through wobbly eyes, a weak, darkened mind, and trembling limbs. I’m overwhelmed with how much I want to do and see and be. Chronic illness hasn’t stopped me; it has amplified me in ways both dark and light. It has shown me fragility and helplessness and fear. Also bravery. Also flux. There are so many possibilities on every spectrum of a thing. Anything can happen– this is terrifying and enlivening.

My first decade of life with type 1 diabetes was so many things, wild and unexpected and bright. I have no idea what the next decade will bring, but it no longer paralyzes me. I’m walking into it the only way there is– day by day. I know that I am still very young, and my enthrallment with life is all encompassing, and it is happening now. I don’t plan to wait it or wish it or worry it away. There is so much goodness here.

The lovely Cheryl Strayed once wrote to someone named Johnny in her Dear Sugar column, “We’re all going to die, Johnny. Hit the iron bell like it’s dinner time.”

Now, for any of us, I can’t think of a thing more vital to do.

The Languages of Lantus

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It appears as though I’ve started a new collection!

I got the English one in America, the Dutch one in the Netherlands, and the RUSSIAN (which I thought was Greek at first, my bad) one in the Netherlands, too… for some reason. I think I also probably have a French one lying around somewhere from when I studied abroad, too.

Do you think I’m the only person in the world collecting all the languages of Lantus? Probably. Because it’s weird.

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Diagnosis Pt. 3: The Days That Follow

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*Note– This is a story in parts, so before reading this one, make sure to read Part 1 and Part 2

The night we got home from the hospital after my 4-day stay, I was starving.

I was tired, confused. I went to the kitchen, kneeled down to the corner cabinet, and grabbed the fresh jar of creamy peanut butter off of the shelf. With spoon in hand, I sat down right there in the middle of the cold kitchen floor and started piling spoonfuls into my mouth, not even registering what I was doing. My mom walked in, but I didn’t look at her. I just kept swallowing.

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Doing Diabetes Like A European

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I bake in grams. I weigh in kilograms.

I count time in (what Americans call) Military Time.

I pick my outfit and plan my day in Celsius.

I walk, run, and cycle in kilometers.

I go shopping with Euros, or a Chip & Pin debit card.

I grocery shop in Dutch. The kids speak to me in Dutch. Sometimes I respond in Dutch, although I try to respond in English, because the goal is for them to learn it. I’ve half-learned a third language, and I didn’t even plan to.

But in the few years I’ve lived abroad, the one thing that has never been touched or altered by European measurement is my diabetes management. Until now.

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“I could never be diabetic! I’m afraid of needles!”

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Although I know people don’t mean harm by saying this, I hate hearing this.

I hate the illogic of it–that I might have a choice in the matter. That somehow I’ve chosen the needles, the blood, the stupid Diet Coke. That somehow fear could conquer the factors that lead to an autoimmune disease.

My darlings, fear doesn’t conquer anything.

I’m reading Jane Eyre right now, and this quote struck me as the most perfect response to someone saying they “could never bear” the treatment required for type 1 diabetes:

Yet it would be your duty to bear it, if you could not avoid it: it is weak and silly to say you cannot bear what it is your fate to be required to bear. 

-Charlotte Bronte, Jane Eyre 

So, friends. Here we are.

I’m bearing something. You’re most likely bearing something. Instead of words that remind us of how incredibly heavy what we’re bearing can be, let’s just high five. Let’s just keep on keeping on.


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