“Chloe” by Jaume Plensa

I woke up early this morning, feeling unrested, achy. Today was the first day in many days that I was able to sleep in, and I’ve been so burnt out lately that I really thought I would. But I didn’t. I woke up around 7, unsettled. I’ve been having a rough few days, so while reaching for my Dexcom, I thought to myself, I need a good number. Please.

:::::: 313 ::::::

A heavy stone formed in my chest, because that is what happens. No falling to my knees, no screaming, no crying. I might have said Fuck out loud. But this quiet weight, hard to hold, rolled through me.

It got worse when I zoomed out to get an idea of my entire overnight blood sugar situation. Not only was it 313 right then, but it had been for hours, and for a while before that, it peaked at 400.

Fuck.

I took insulin. I drank water. I made coffee. I sat curled up on the couch in my quiet apartment.

I don’t know if I’m angry, or sad. I don’t feel sick. I don’t want to hear words of sympathy. I don’t want to dissect what went wrong at 11pm last night, what I did and did not do. I don’t want to think about the pile of these hyperglycemic nights that have happened lately. I don’t want to consider this a lesson or a punishment.

I just want it to be what is has been: hyperglycemia that is now coming down.

I just want to do the next right thing, which varies, but is some form of self-care:

a phone call, an appointment, a snack, a deep breath. 

To be kind to myself through this is incredibly important,

because it happens, and it will happen. 

And because the bottom line is: 

I am never not trying.

 

“Silence is the ocean of the unsaid, the unspeakable, the repressed, the erased, the unheard. It surrounds the scattered islands made up of those allowed to speak and of what can be said and who listens. Silence occurs in many ways for many reasons; each of us has his or her own sea of unspoken words.”  —Rebecca Solnit

 

People used to say to me, in my high school and early college years, Wow, you handle your diabetes so well, you never even talk about it! I quickly began to equate those things with each other: that silence and that strength, and decided that silence was strength. It was a learned loneliness that took me 9 years to begin unlearning, and I still am.

I do so, mostly, by writing it down, the way I’ve (un)learned most things in my life.

On the day of my 8th anniversary with diabetes, sitting on a futon in my father’s living room while I was in between places to live, I sat down and wrote an open letter to Type 1. I say wrote, but really, poured would be a better word. That interior conversation, from me to T1D, poured out of my mind, heart, chest, fingertips. I wrote everything I’d felt, carried with me, but never said out loud. I had no intention of sharing it with anyone, and saved it as a Word document on my computer. But I kept feeling this tugging, and this tugging was… just wanting to feel heard.  

After a few days, I posted it on the travel blog I’d used while studying abroad. Then I debated some more, whether I wanted to share the link on Facebook, because it was personal, soooo personal. I felt like I’d just taken the heaviest parts of my heart out of my chest, and smeared it onto virtual paper. I imagined holding that out with trembling hands, and I was afraid. Afraid I would be met with disinterest, apathy. Not afraid people would be mean—I’m not sure that crossed my mind—but wildly afraid that, simply, no one would care. That no one would be even a little bit interested in this part of my life—this huge, heavy part of my life. I was afraid I would still feel alone—more alone, even, than before.

I ended up sharing it, because the pain of staying silent—of compartmentalizing myself so much—became greater than the pain and fear of putting it out there in the world.

This is how we unlearn. It feels shaky. It takes guts.

My writing was met with kindness. Empathy, interest. I always knew you were strong, one of my closest friends said to me, but I didn’t realize HOW strong.

I had no idea was the response I received most. I knew you had diabetes but… I had no real idea. That’s how I started to trust that I had a story, and a voice that could tell it. It started in whispers. Written-word whispers.

Half a year later, I went to the DiabetesSisters Conference near DC, and this changed everything for me. Writing that blog post made me feel heard, but I still didn’t know anyone else with diabetes, and I had a tug about that, too. I still felt alone. This conference, this room full of women who shared this lived experience deeply and daily—this is where I came to feel known. It was, as Marina Keegan once wrote, “the opposite of loneliness.” Soon after, I connected with the Diabetes Online Community, started this blog, and began writing my way through this lived experience of chronic illness. I’m not exaggerating when I say it is the healthiest thing I’ve ever done for myself.

Silence isn’t a parameter for strength. So many of us, in different ways, are taught that it is, and this causes immense suffering.

And, too, there are those scattered islands Solnit referred to, made up of those allowed to speak and of what can be said and who listens. Through the years, I’ve had to fight to be heard by doctors, by insurance companies, by pharmacy technicians, and by misinformed individuals with stigmatic opinions. I’ve had to defend the way my body works, and fight for what I need in order to stay alive. And now more than ever—the personal is political—we must recognize the vitality of our voice, and of our story.

“Words bring us together, and silence separates us, leaves us bereft of the help or solidarity or just communion that speech can solicit or elicit. […]

We are our stories, stories that can be both prison and the crowbar to break open the door of that prison; we make stories to save ourselves or to trap ourselves or others, stories that lift us up or smash us against the stone wall of our own limits and fears. Liberation is always in part a storytelling process: breaking stories, breaking silences, making new stories. A free person tells her own story. A valued person lives in a society in which her story has a place.” —Rebecca Solnit

In creating Coffee & Insulin, I made a homebase for my wondering and wandering life with Type 1 diabetes. I’ve done so much seeking, questioning, processing, and growing in this space over the past 3 years; it has been a shelter, a place of voice-strengthening and load-lightening, and friendship-building. The very best part of it, undoubtedly, has been the ability to connect with people all over the world. I’m honored every time someone writes to me, and shares their own story with me. A few months ago, a woman in her twenties wrote to me from Italy. An excerpt of what she said was:

“Maybe I will try to tell my story, in a similar way as you do. Mostly, I think I want to tell myself my story. And maybe share it with other people, who knows. I guess I realized I can have a story to tell.”

Everyone has a story to tell. For those of us living with diabetes or another chronic health condition, however, I think it is even more vital to find a way to express, transform, release, and connect to what we live with, and how we feel about it, and how we navigate it. This is why the arts are so incredibly important.

Here’s something: Write a letter to yourself, to your health, to the universe, to the government, to your family, or to me. This is the unlearning. Get to know your own story, then say it out loud. Even if your voice shakes. Especially if it does.

 

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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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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.