On Getting It Right

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I didn’t even realize I was staring at my roommate, Kelsey, until she made eye contact with me and said, “Oh, sorry.” I didn’t realize how low my blood sugar was until that moment, either.

Kelsey was watching a sketch by Tig Notaro in the living room, and I was sitting at the kitchen table, writing. She was apologizing because she thought she was bothering me by laughing too much. “Oh, no, you’re fine,” I said. “Keep laughing. I’m low.”

Technically, I’d already known my blood sugar was low about 20 minutes prior, and I’d played the game wrong. For some reason–blame in on the fact that Low Blood Sugar Brain is like swimming in a mud pit–my problem solving skills decided I should eat a bowl of Vanilla Almond Granola with unsweetened almond milk. What I’d needed was something quick: apple juice, honey, or, when desperate, glucose tablets (which are basically edible sidewalk chalk.)

“I didn’t do it right,” I slurred to Kelsey, but really to myself. “I did it backwards.”

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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.

Patmos: Carrying the Calm

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I just got back from the Greek island, Patmos, where I didn’t see even one cloud in the sky the entire time I was there. Not one. The idea that there was literally not even one hiding somewhere was so absurdly ideal to my friend Harrison and I that we actually started looking for them, trying to seek them out. But they really just did not exist in that slice of sky. It couldn’t be true, and it was.

It was after hiking to a small, cliff-entangled beach, sitting near the water’s edge by myself, that I realized there was nowhere I would rather be.

(I know, I know, this is how these kinds of things always happen, right? Always sitting somewhere unimaginably gorgeous, reflecting the Big Questions to a body of water. Maybe it will make it seem more like a true, awkward human life if I include the detail that it was literally so windy on this beach that sand was slapping me in the face during the entirety of this seemingly serene moment. The only comfortable place to sit and avoid sand in my mouth was to sit IN the icy water, and I still had an inch of salt and sand packed into my scalp.)


While sitting there, I simply became aware of the fact that I wasn’t waiting for anything. Or wanting for anything. I wasn’t wishing I were somewhere else, or reaching to check my phone, or creating a quiet to-do list in my head. I wasn’t already mentally on to the next thing, and I felt no pressure to be.

Even with my big, impending move back to the United States, and how overwhelmed I’ve felt from the past year. That I would turn back up in America with no job, or life plan, or even health insurance. That I still wasn’t quite sure how I would pay rent the following week, and that my diabetes CGM sensor died at the beginning of my trip and I couldn’t replace it, and I was frustrated and scared. Despite feeling so unsure, so orbital and in-between everything in my life, I sensed an unfolding in which I would ultimately be alright.

Patmos is gentle and mystical.

I spent so many hours on one specific perch of the hotel overlooking the sea and the cliffs that I can feel it in my bones even as I type this, even while I watch rain smear down my windows in Amsterdam.

Patmos radiated a calm to me that I’ve long heard about from others, but never felt in myself. It was unprecedented and wholly unexpected, but I hope to carry that calm with me as I move through rougher waters. It was so subtle and haunting, moving through me in a whisper while I wasn’t really doing anything at all.

I was just there, only being, and it felt so intrinsically enough.