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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.

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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.

 

 

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For the past two weeks, I have been living in a small house in my mind built of these 2 questions:

Should I try to eat low-carb?

and

Should I stop drinking?

I think my body would thank me heartily if I YES and YES’d both of these things.

My blood sugar, in particular (which is the only reason I’m considering the low carb thing) would maybe look less like the inconceivable Rocky Mountains, and more like, I don’t know, some mild, rolling hills. Or even better, a straight line, a still morning lake.

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I was doing a tarot reading recently and pulled the Ten of Disks, Wealth. A passage in the book that accompanies these cards stated, Clinging and grasping arise out of fear (conscious or unconscious) of deficiency.

*

A strange thing happens when you open yourself up to a wider range of possibility:

things and people find you or you find them or you find each other, and they are your guides.

This week, I’ve been stumbling upon story after story which answers questions and reinforces ideas that I hadn’t yet spoken out loud.

+ It’s Carbs.

This woman writes about sobriety better than anyone I’ve ever read. I cried, laughing at the truth.

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I mean, if cheese were a carb, the game would be over before it began.

So there is my gratitude list.

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There is this haunting little idea, Moderation. I decided a few days ago–I actually deliberated this for quite some time–that the word Moderation is my least favorite word in the English language.

I’d rather commit to something altogether than expend the mental energy on half-hearted things. Grey areas are okay, or even essential, in some scenarios, but in others it just makes every decision more complicated. It makes a choice feel heavier, which is ironic because generally the idea of 80/20, 99%, etc., is to give you some breathing room, some flexibility. I require a high level of accountability because when I don’t have it, I start making up my own counter-intuitive rules to get out and around and between things. I’m brilliant at it! So I require a bit (ok, a lot) of structure.

For better or worse, the way my brain works is akin to those black & white cookies they sell at Starbucks, which Carrie Bradshaw ate on Sex and The City that one time. You know the ones. They’re delicious. I wonder how many carbs are in them.

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But I’m only 25!!!! I think to myself, breathless with grief for black & white cookies potentially uneaten, wine potentially undrunk.

*

It all comes down to the question of What is truly worth it? 

The summer I turned 23, right after I graduated from college, everything I ate or drank made me feel sick. Everything. For months. And no doctor could tell me why. I had an endoscopy, to see if I had Celiac. I didn’t. I ate a radioactive egg sandwich and laid under a machine that tracked my digestion for two hours, to see if I had gastroparesis. I didn’t. I had bloodwork, x-rays, physical exams. Nothing, nothing, nothing. I laid in my bed on warm summer days and cried and wrote this in my journal:

If you don’t have a foundation of health, you don’t have anything.

Thinking of this simplifies certain decisions. But I’m young. And none of this is easy.

 

 

Here is where I’ve looked up and found myself.

Medically, since coming back from Amsterdam a few months ago, I’ve felt like I’m sinking and waiting and spinning and shaking and guessing, guessing, guessing all the time.

I feel like I have an ever-growing list of Shit I Need To Figure Out.

I feel the weight of this infinite illness that I can’t afford.

Since losing access to my Dexcom, I feel blind. Like I have no sense of blood sugar control, like I don’t know my body, like I don’t know how to even begin to take care of myself. I feel very, very, very in-the-dark. Lost in the deep, dark diabetic forest.

This isn’t diabetes burnout I’m struggling with.

This is the elusive diabetes itself.

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I woke up today with that line by Rilke buzzing through my brain, “You must change your life.”

I can do this, I thought. I can. I felt okay about it. I had the day off, I could certainly take a small step in the direction in which I need to go. That is, the opposite direction of the way I’ve been going.

I had my laptop in front of me with about 47 tabs open to my new health insurance policy, to Dexcom, to the supplier that Dexcom uses, to eye doctors, to endos, to the black market in an attempt to sell my soul to afford these things.

So, I began by calling Dexcom. I just can’t play this game without a CGM. I really can’t. And I don’t want to. Having a Dexcom made managing this disease feel possible in a way that is now lost to me. And that loss, my friends, is mighty dangerous.

I’m not going to go into every excruciating detail of the phone calls that ensued for far too long, but just know it was a lot of “Please wait one second while I transfer you” and 20 minute holds and lots of back and forth between companies and suppliers. In the end, of course, I first needed to make an appointment with an endo so I could get the verification I need for Dexcom supplies. But… I’m just getting back on my feet here in this city, and I didn’t like my previous endo, and I want a new one. Round and round and round in the circle game. Cue many more debilitating phone calls.

They went a lot like, “Sorry, our next available appointment is in 2016 and your co-pay for this next-year appointment, on top of the exorbitant amount you pay monthly for god-awful health insurance, will be $70 because in the healthcare system we live in, it’s either your money or your life. See you in January, good luck getting by until then. Cheers!”

So, guess what?

I didn’t even end up making one appointment today. I didn’t set one thing straight.

My blood sugar dropped. I cried into my hands.

Back into the forest I scurried.

 

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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.

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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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