This past year has been almond butter, popcorn, La Croix. Minestrone soup, coffee with cream. Not much. A lot of air.

23 was Amsterdam: pasta carbonara, aged gouda cheese. Yogurt on granola. Translating Dutch in the grocery store, balancing bags on my bicycle handles. Learning to cook perfect hamburgers for a family of four. Belgian beers.

22 was senior year: roasted brussels sprouts, vegetable omelets with hot sauce, bottles of red wine while writing literary critiques.

21 was France: chunks of brie on fresh baguettes, ratatouille crêpes from the underground shop. Too much Nutella, never enough Nutella. French wine: red, white, rosé, depending on the weather and time of day. Street food in the 12 countries I traveled.

20, 19: Cheese quesadillas. Whatever booze someone would buy me.

18: Perfecting the water-to-grain ratio of brown sugar instant oatmeal, prepared in my dorm room microwave. Dining hall salads, or whatever else was vegetarian. Red cups of bright fruit juice mixed with cheap vodka, poured by frat bros. I lost 8 pounds that year.

15, 16, 17: Jager bombs, beer bongs, various fruit-flavored rum. Buffalo chicken bites and cups of ranch from the Irish-themed burger joint I worked at, where older men told me I should smile more, before making their way to the bar.

14, the year of my diagnosis: turkey and cheese sandwiches slathered with mayonnaise, cups of vanilla pudding, boxes of apple juice. The year I first drank alcohol: airplane bottles of Smirnoff, warm Natty Lights we got from someone’s older brother, taking a sip, passing it around.

My childhood, from 5 to 13, was artichokes with lemon-butter. Sometimes cups of raspberries, and other things, depending upon which of my parents I was with that night. Mondays and Tuesdays with Mom. Every other Wednesday with Dad, and every Thursday. Every other Friday, Saturday and Sunday with Mom. Back and forth like that, with my pink duffle bag. The way I know how to live: adaptively, in motion, a baby bird taking flight.

They would call me as I re-packed my bag at the other’s house, and ask me what I wanted for dinner that night.

I never quite knew. I said artichokes, my answer consistent, familiar. Whatever I hungered for, it was always the same.

 

Guys, I’m tired.

I am really, really, really, really tired. And it is not for lack of sleep. It’s the kind of well-rested tired that stems from trying to get my blood sugar between these two lines and to STAY THERE, while acknowledging that it quite literally never will.

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The kind of tired that comes from not only trying to hold my health together, and not only trying to hold the rest of my life together, but trying to propel these things forward by showing up to all the doctors appointments, and showing up to work every day, and refilling the medicine on time, and going grocery shopping before I end up eating stale crackers for lunch and carrying a 3-day old bottle of Coke in my purse for emergency glucose because I’ve run out of juice boxes. It’s the kind of tired that comes from the reality that Donald Trump is literally, actually, SERIOUSLY going to be the next President of the United States. It is the kind of tired that comes from checking my bank account. It is the kind of tired that comes from remembering that I still have a gym membership I’ve used 3 times in 4 months. It is the kind of tired that comes from unlearning the lifestyle I’ve grown up in to make space for one that is actually sustainable, which I’m told will one day feel less insurmountable than it currently feels. It’s the kind of tired that comes from carrying on despite feeling this tiredness for days and weeks and months on end… because that is what we do, right? We keep showing up. We keep checking our blood sugar. We keep fighting the good fight. This is what I’ve been trying to do, anyway.

But today, my alarm went off at 7:30 and I laid in bed until 8:10, made coffee that I didn’t have time to drink, went to an appointment at 9, drove home, and promptly crawled back into my bed, which is exactly where I am right now, writing this. Drinking that heated-up coffee. Because I am tired. Today, my entire body feels weighted, cloaked. This weight is behind my eyes and on my shoulders and in my chest and down my legs. It is in every deep breath and the subtle ache in my head. It is everywhere. And it is telling me to sit the fuck down.

I am confident that some of you–many of you… most of you?–recognize what I am feeling. This burnout.

Our task is great, in taking care of our fragile and fluctuating health the way we do, and in taking care of our entire sprawling lives the way we do. Absolutely worth it, I’m reminded by wild, glimmering, every day magic–but also absolutely exhausting at times.

I know I’ve been experiencing burnout in all realms of life, and diabetes burnout, specifically, by the subtle ways I’ve been handing (or not handling) things: walking around with an expired Dexcom sensor on my thigh because I just can’t find the energy to replace it. Eating 4 Reese cups at work because… I WANTED THEM AND THEY WERE THEREand, sure, taking the insulin, but then watching, apathetically, as the blood sugar spike-and-crash effect ensued. Realizing a low is creeping in, and instead of immediately getting up to get some juice, spending 3 minutes sitting on the edge of my bed with my head in my hands, thinking only, I. Am. So. Tired. 

Speaking of low blood sugar, my blood sugar is low now, as I write this, so… I have to go take care of that now.

This feels like an accurate way to end this particular post, anyway. By no means ideal, but accurate.

 

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With chronic illness, I often feel perpetually suspended between worlds, in some kind of grey area of healthy/sick. While I was still in the hospital, upon diabetes diagnosis, recalibrating everything I’d ever known about taking care of myself, I asked my mom, “Does this mean I’m sick?” She paused, then said, “Don’t think of it like that.”

Eleven years later, I don’t really believe it “depends on how you look at it” so much as I believe that no matter how we look at it, there is both darkness and lightness there. Not alternating, but simultaneous. Not dueling, but co-existing.

I’m reading a book, The Faraway Nearby by the ever-brilliant Rebecca Solnit, in which she’d spent the better part of the previous 2 chapters talking about the ways her mother abandoned her while she was growing up.

Then, she shifted within her own story and wrote this:

Like lawyers, writers seek consistency; they make case for their point of view; they do so by leaving out some evidence, but let me mention the hundreds of sandwiches my mother made during my elementary school years, the peanut butter sandwiches. When my friends began to have babies and I came to comprehend the heroic labor it takes to keep one alive, the constant exhausting tending of a being who can do nothing and demands everything, I realized that my mother had done all these things for me before I remembered. I was fed; I was washed; I was clothed; I was taught to speak and given a thousand other things, daily, for years. She gave me everything before she gave me nothing.

I could say, yes, diabetes has felt to me at times as “a being who can do nothing and demands everything.” But that is not the whole story. The truth is ever more intricate than Good vs Evil. What have thousands of days living with Type 1 diabetes brought me? So many things. So many bruised things; so many beautiful things. An awareness, a sensitivity, and a reservoir of strength that I carry with me in everything I do. I can’t truly demonize something that has connected me to so many people,  places,  ideas, and brought me so much purpose. This thing that has brought me to my knees with its inescapability has taught me through that same inescapability everything I know about acceptance. It is teaching me, still, how to not run away. It is teaching me what is staying, what is sitting, what is being.

Diabetes is too much a part of me, intertwined in everything I do and am, to say This part of me is good and This part of me is bad. To go down that path would be to end up with a body divided. That is a dangerous place to be. I know, because I’ve been there. Minimizing, disassociating, demonizing, attempting to shoulder through with brute force, throwing in the towel (then promptly scooping the towel back up because my life depends on it)– I’ve ricocheted like a pinball through my own life, through my own bodily experience.

These days, I try to acknowledge the whole story (as much as I can while still being a human subjective in her experience) in all its multi-dimensional truth: wellness and illness, strength and fragility, sorrow and joy.

I wrote this yesterday in a different context, regarding something else entirely: because although my trip to New York was pure magic, it was also difficult, the way everything feels difficult these days. Difficult magic. 

It fits here too, for what has my whole experience with diabetes been?

From my body’s autoimmune attack–which would’ve killed me had I lived in another time, or even, grievously, in this same time but in another place, to every high blood sugar I have lowered and every low blood sugar I have raised, to the depths of despair and every sun-dappled morning:

it has all been difficult magic.

 

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11/9/16–bright lights: notebook from K, note from V.

In the days since the election, writing has never felt more vital to me. It is what I’ve clung to–mostly other people’s, mostly poetry. But also my own. Also long, winding prose.

It feels primal to me, to run to books. Art helps, I’ve said to many people this week, sending them a link to one of my favorite poems, while wondering if they think I’m minimizing the situation, if I’m delusional, if I think a poem is going to save us from our racist, misogynist, xenophobic, outrageously unfit president-elect.

But art does more than help, and it does more than heal. Art is a political act. It holds unparalleled power, real movement, revolution.

I’ve had a loop in my grief-stricken brain humming, How, how, how can I contribute? Action, of course. Showing up. Organizing. Communicating. Advocating. Volunteering. But what can I *create* here? Where do I begin?

Last night, I started reading a book written by one of my very favorite writers, Rebecca Solnit. I checked it out at the library the weekend before the election. Had I read these words of Solnit’s before the election, I would have loved them. They would’ve etched into my skin. But they wouldn’t have hit bone quite the way they have now.

The mysterious alchemy of words, of stories, is how often we hear them or read them at what feels like exactly the right time. Kismet.

The book is The Faraway Nearby. This is the beginning of the first chapter:

***

What’s your story? It’s all in the telling. Stories are compasses and architecture; we navigate by them, we build our sanctuaries and our prisons out of them, and to be without a story is to be lost in the vastness of a world that spreads in all directions like arctic tundra or sea ice. To love someone is to put yourself in their place, we say, which is to put yourself in their story, or figure out how to tell yourself their story.

Which means that a place is a story, and stories are geography, and empathy is first of all an act of imagination, a storyteller’s art, and then a way of traveling from here to there. What is it like to be the old man silenced by a stroke, the young man facing the executioner, the woman walking across the border, the child on the rollercoaster, the person you’ve only read about, or the one next to you in bed?

We tell ourselves stories in order to live, or to justify taking lives, even our own, by violence or by numbness and the failure to live; tell ourselves stories that save us and stories that are the quicksand in which we thrash and the well in which we drown, stories of justification, of accursedness, of luck and star-crossed love, or versions clad in the cynicism that is at times a very elegant garment. Sometimes the story collapses, and it demands that we recognize we’ve been lost, or terrible, or ridiculous, or just stuck; sometimes change arrives like an ambulance or a supply drop. Not a few stories are sinking ships, and many of us go down with these ships even when the lifeboats are bobbing all around us.

In The Thousand and One Nights, known in English as The Arabian Nights, Scheherazade tells stories in order to keep the sultan in suspense from night to night so he will not kill her. The backstory is that the sultan caught his queen in the embrace of a slave and decided to sleep with a virgin every night and slay her every morning so that he could not be cuckolded again. Scheherazade volunteered to try to end the massacre and did so by telling him stories that carried over from one night to the next for nights that stretched into years.

She spun stories around him that kept him in a cocoon of anticipation from which he eventually emerged a less murderous man. In the course of all this telling she bore three sons, and delivered a labyrinth of stories within stories, stories of desire and deception and magic, of transformation and testing, stories in which the action in one freezes as another storyteller opens his mouth, pregnant stories, stories to stop death.

We think we tell stories, but stories often tell us, tell us to love or to hate, to see or to be blind. Often, too often, stories saddle us, ride us, whip us onward, tell us what to do, and we do it without questioning. The task of learning to be free requires learning to hear them, to question them, to pause and hear silence, to name them, and then to become the storyteller.

***

This left me breathless. It grounded me in a time that feels groundless.

Now. To hear, to question, to pause, to name, to see. To tell.

We have much to do, my friends. My suggestion: begin in the listening.

Truly, this work has never mattered more.

 

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On Thursday, the day before my wisdom teeth surgery, I typed out a list of diabetes-related information that I thought my roommate, Owens, should know. He was the one driving me to and from my surgery, thus was entrusted with managing my entire life as a whole, in case anesthesia and/or painkillers made me unable to do so. This list began innocently enough, with things like “This is the range my blood sugar should be in” and “Here is what to do if it’s below 80,” but it quickly grew to be an entire page long, and even then, there were so many things I’d left out. Like circumstances of activity and pain and the last time I’d eaten and the next time I’d eat and the protein/fat/carbs in that food and how much of it I’d even be able to swallow because of the state of my mouth. There is so much that goes into this

I’d never before tried to explain in any real depth how my management of diabetes worked, and to see it on paper was stunning. I sat there for a minute looking at all the information that had just flown out of my head and onto the page, and thought, Thank god I know myself. Thank god I have myself. The idea of temporarily not having myself to take care of me was freaking me out, despite how attentive and well equipped the doctors were, despite how intelligent and caring my friend was.

All I could think was: But they are not me.

Finally, while writing up this list, I thought, I cannot give Owens more than one page of instructions on How To Keep Me Alive; it’s going to scare the shit out of him. So I stopped at the end of the page and wrote, “If you have any questions, please call my friend, Amy. Here’s her number. She also has Type 1 diabetes.”

(After I printed it out, I was feeling smug about how “prepared” I was. How Responsible Adult of me. 5 minutes later, I pulled the paper out of my purse and saw that I’d spilled water all over it. Whatever, it dried. It’s fine…)

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When I gave the piece of paper to Owens, he studied it for 15 minutes and asked me questions. It was strange for me, and probably for him, because we’ve been best friends for 8 years now. We’ve backpacked through Europe together, and gone on camping trips and road trips to Tennessee and Boston and Alabama. We’ve lived together for a few months now, but even before then, for nearly a decade we’d grown up together and hung out so often we basically lived together. He knows me better than most people, and yet, here we were– me, after all this time, only now explaining all of this to him.

Me: I have to have a juice box, then wait 15 minutes.

Him: What happens after 15 minutes?

Me: If it isn’t raised enough, I need more sugar. Also a snack so it stabilizes.

 —

Me: I take 2 different types of insulin every day.

Him: Wait, why?

Me: One is only in the morning, as a kind of baseline. Extended release. 22 units.

Him: How do you measure the units? 

 —

Me: 2 beeps means high and 3 beeps means low.

Him: I feel like 3 beeps should mean high.

Me: ……..Why?

Him: Because its, like, an extra beep, ya know. Like, it’s higher.

Me: Wha–no, don’t confuse yourself. 3 beeps means low. That’s just how it is. 

 

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I have no satisfactory explanation as to why I’ve never broken all of this down to someone before. No explanation other than… I didn’t feel the need to. Emotionally, that is.

I’ve carried myself by writing, and by having a handful of Type 1 friends to go to with questions, concerns, camaraderie. This blog has opened a portal of connectivity I never saw coming, and now I can’t imagine not having it. I feel rich in community, and I’m grateful for that.

I’ve also not explained myself before because I didn’t want to have to justify things, or I didn’t want people to worry, or any number of other reasons. But, for a long time, there had been a physical need. A just-in-case need. Honestly, for months, I’d been meaning to show Owens how to use glucagon– just in case he ever found me unconscious, or things were going rapidly downhill. But I never did. I don’t know why, exactly. I’m not the most precautionary person, I’ll tell you that. Maybe a naive part of me just hoped it would never come to that– the same way, until this year, I never carried an umbrella with me. I just hoped it wouldn’t rain. Forecast be damned.

But so, I introduced Owens to the world of my illness.

I explained to him how things work here and why they work this way and how fragile and resilient we can simultaneously be.

In the end, he didn’t even have to refer to my paper. I was loopy, but still able to take care of myself. It blows my mind sometimes, how capable we  are of managing the complexity of this disease in the wildest of circumstances. We just know.

///

Last night, at 1:30am, Owens opened my door. “Sarah,” he whispered. “Your blood sugar monitor is beeping.”

“Oh, shit, thanks,” I whispered back, reaching for my Dexcom on the bedside table. I’m a very light sleeper, but even still, somewhere along the line my brain got used to these beeps and they take a long time to wake me now.

“It’s 3 beeps,” he added. “So, it’s low.”

 

Part of his concern made my heart swell, and part of it made my heart shatter.

The portal is open now; he’s more aware of what is continuously going on with me.

Though he’d heard my Dexcom beep a thousand nights before, he now got out of bed to make sure I was okay.

Knowing that he knows how it works is a comforting thing. It is, too, a weighted thing.