A few months ago, I lay on my back on an exam table, wearing a blue cotton hospital gown. The doctor held my right arm in her hands. There was a medical student, a man about my age, sitting next to her, watching as she dotted my arm up and down with black marker, marking various nerve spots. I was having an EMG (electromyography) done, to test the muscles and nerves in my right hand, because of a very subtle tremor I have only in my right hand and only when writing. (This is no small problem when you are a writer.) An MRI last December showed inflammation in the middle of the back of my hand, but it is a mystery as to how it happened, and why. Seemingly out of the blue at 23 years old, I stopped being able to hold a pen properly, or write anything down.

The doctor picked up a tool and sent electric shock zaps (not the medical term) into a nerve near my elbow five times. It twitched, each time a bit stronger. Each time a bit more painful, but bearable… though I no longer know what my pain tolerance is compared to someone who doesn’t give themselves 6-8 daily injections.

The doctor explained to the medical student what they were looking for on the computer screen beside them, after the zaps. Something about timing. Something about nerve response. She did this all over my arm for about 30 minutes, then told me everything looked good. But we weren’t done— next, to test muscles, she had to insert thin needles up and down my arm and wrist and hand, into the muscles. Then I had to flex the muscles with the needles in them. This was not fun. This was painful. I’m sorry, she said over and over again as my limbs constricted in pain, eyes tightening. Afterward, again, she told me everything seemed fine.

When I came home, I sat on my balcony in the sun and started listening to an OnBeing podcast interview Krista Tippet did with Naomi Shihab Nye, called Your Life is a Poem. I was particularly struck when she said this:

I mean, just thinking about everything that’s going on, kind of like when you’re a child fascinated by all the stuff that’s going on inside your body, and you didn’t have to tell it to do that. Like, I used to think my stomach is — I’m digesting right now. I didn’t have to tell it to do that. It just did it. That’s incredible. Or the heart beating, or the blood rolling through the veins.

And you think, wow all this stuff goes on. That’s not commonplace to me. That’s miraculous. It’s amazing.

I paused the podcast, and thought about that for a second. I don’t often stop to notice my breath unless I’m being told to in yoga or meditation. I don’t walk around thinking about my heart beating in my chest, unless it palpitates, and then I’m only thinking of the plethora of things that could be wrong. I write a lot about my interior body, but only in its chaos, only in the wake of the things it can no longer do because of diabetes. And as I curse it for all of its brokenness, it continues to carry me. It continues to provide me with breath and blood, vital and wholly unnoticed.

I took out my notebook, and began to write the sentence, I’m in the midst of a bit of a medical mystery. Only, I accidentally wrote “miracle” instead of medical, so the sentence read, I’m in the midst of a bit of a miracle.

And then I stopped writing, looked at it for a long time, and took a deep breath. This sentence told a different kind of story. One within which I can breathe, and live. One that, when I can pause long enough to let it in, rings so very true.

I’m in the midst of a bit of a miracle.

I left it just like that, my one-sentence-story, unstoried and restoried with the matter of one word, and turned my attention to the glowing green leaves of the sugar maple tree bending toward the ledge of my third-floor balcony.

We are living in a poem, and we are the poem itself.

 

“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.

 

Last night, in my dreams, I was trying to save my own life. Then I woke up, and realized I actually had to.

I’d been dreaming I was eating gummy bears, but there were only a few left, so I began drinking glass after glass of apple juice. The apple juice was thick, and had cinnamon in it, in that weird way dreams distort reality. A mix between an apple’s juice and sauce. I remember, as I drank, worrying that the juice wasn’t working to raise my blood sugar.

By the time I came to consciousness, body and brain lead-like at 3:07am, my Dexcom only read “LOW.” This happens when a person’s blood sugar drops below 40mg/dL. At that point, the machine abandons numerical value and says to you, person with diabetes who is in the throes of a medical emergency, FUCK THE EXACT NUMBER, GOOD GOD YOU NEED TO PUT SUGAR IN YOUR BODY RIGHT NOW.

There is nothing more terrifying to me. Nothing.

It took me a few minutes to realize that I had not, in fact, already treated this low with gummy bears and saucy cinnamon apple juice. That I had dreamt it, and that I was still very much in danger. I must have only halfway woken to the Dexcom’s other Low alarms, thought to myself “I need to treat this low” then gone back to sleep instead and done it in my dreams. This isn’t the first time this has happened—I remember more than once in college, waking to my alarm at 6am for work at 7, hitting snooze, DREAMING I had gotten up, taken a shower, gotten ready and gone to work, only to jolt up several minutes later realizing I had to do it all over again in real life. Never a pleasant way to start the day.

Once I got my bearings, I dragged myself to the kitchen and poured two glasses of apple juice, spilling some on the counter and knocking over some cans in the process. I broke off a cube of my roommate’s cookie dough, shoved it in my mouth, and stumbled dazedly back to my bed.

Usually, when I’m treating a low, I start to feel better very quickly, within minutes. Just the relief of swallowing sugar, knowing it is where it needs to be (in my body) and will do its very important job (keeping me alive) is enough in itself to stop my shaking. Not last night, though. As I watched the number on my Dexcom climb back up over a span of half an hour—62, 83, 95—I couldn’t stop trembling.

Near 4am, I grabbed a granola bar out of my purse and ate half of it, knowing full and well it would send my blood sugar over the threshold of 200 and into High territory. I didn’t care. I just wanted the trembling, the worrying, the waking nightmare to end.

 

For the first year after my diabetes diagnosis, my mom and I set an alarm at night to go off at 3 in the morning. This was so I could wake up and check my blood sugar— to ensure I would make it safely through the night. This is no small thing, and though I don’t think I’ve ever discussed this with another person with diabetes, I imagine we have all, at one point or another, gone to bed one night with a sinking feeling, an uneasiness, a quiet fear, Will I wake up tomorrow?

I used to, as a teenager who grew up with no religion whatsoever, whisper in the dark while lying in bed, Please. Please let me wake up tomorrow morning.

Getting a continuous glucose monitor in 2014 was a game-changer in this particular realm of fear. It feels akin to a guardian angel. If my blood sugar is low (my notification is set to 80 because once I start to go low, my sugar is like a landslide) it will beep 3 times. If it is below 55, it will beep incessantly with the words URGENT LOW until I turn it off. For my first decade with diabetes, I didn’t have a CGM, and I realize many, many, many people still do not have this access. For that first decade, I did wake up in the middle of the night each time my blood sugar went low (which was countless times, hundreds, thousands of times.) I’ve taken a few CGM breaks in the past few years, sometimes for months-long stretches, and though my body had never failed to wake me up when I’ve needed to treat a low, I have often been unable to help thinking, quietly in the dark, But what if this time I don’t wake up? For a long while in my teens, I just let my blood sugar run high every night, caving to this fear.

Last night, my continuous glucose monitor woke me up at 3:22am. It was beeping loudly, incessantly, and URGENT LOW flashed across the screen. I vaguely remember waking up a bit earlier than that, when it was beeping Low but not yet urgent, and I must’ve silenced it and fallen back asleep. At 3:22am, it was 45.

After getting my bearings for a moment, I drained the box of grape juice sitting beside my bed.

Then, sitting there in the dark, hands still trembling, brain still woozy from hypoglycemia, I got onto my phone and checked to see what the final vote on the Skinny Repeal had been. I wanted to stay up for it, had been watching the debates until around midnight, but started to get too tired and anxious and impatient, so I went to bed.

The reason I’ve been able to have a CGM for the past few years is because of the ACA. From age 21, my circumstances didn’t allow me to stay on a parent’s insurance, and I live in a state that did not expand Medicaid. In my early twenties, in the tumultuous time immediately after graduating college and still today, the ACA has been essential to my ability to get the medicine and supplies I need in order to stay alive. I have to admit, I’m hoarding supplies like crazy these days. Just in case.

At three in the morning, my blood sugar was dangerously low.

At three in the morning, my CGM beeped me awake so I could take care of myself.

At three in the morning, I sat vulnerable in my bed, half-asleep yet frantic to know what the future of my healthcare held.

At three in the morning,

I learned the Skinny Repeal failed,

my blood sugar began to rise,

and I took a deep breath.

Momentary relief in struggle that is far from finished.

The nightmare is over, at least for now. tweeted Elizabeth Warren,

at three in the morning.

“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.