“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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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.

 

 

Last night, I pinched my stomach and plunged a needle into the layer of fat several inches to the left of my bellybutton. I do this 6 or 7 or 8 times every day– so often I don’t even think about it. Often I don’t even feel it. But sometimes I do and sometimes I really do. Last night, as soon as the needle slid beneath my skin, I hunched over in a sharp, white flash of agonizing pain. Oh my god, I said out loud, to an empty room, to myself, to my body. I couldn’t even bear to inject the insulin. The needle hurt too much. I pulled it out, trembling, clutching my side. A single drop of blood bubbled up, and began to drip down my body. One tiny trail of blood, like one tear rolling down your cheek. I wiped it away.

I still hadn’t taken the insulin, so I, slower this time, stuck the needle into my right side, still reeling from the shock of the left. This time it didn’t hurt any more than usual. I straightened my shirt, and got on with my evening.

The pain on the left has gone away, but a bruise remains. It sits about an inch away from another bruise just like it.

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My 11th diabetes anniversary is coming up in 2 days, so my relationship with the disease has been on my mind more than usual. I’ve been feeling, for a week or two now, extra sensitive, extra frustrated, extra scared and extra grateful all at once. I’ve been feeling all of this without saying any of it out loud, writing it down a little. Mostly just carrying it.

Then, last night, one of my Facebook friends, Stephen (Hi, Stephen!) posted a reminder about a DSMA (Diabetes Social Media Advocacy) Twitter chat that happens weekly on Wednesday nights (9pm EST, #dsma, if you’re interested!) I usually fail to remember that this is happening, but as soon as I saw his post, I put an alarm in my phone for 8:50 to remind myself. I’ve floated in and out of this chat for years, going through periods when I participated weekly, then months and months when I didn’t. Life happens. I hadn’t participated in months, but as soon as I logged on last night and saw familiar names and faces, some who I’ve met in person and many I haven’t, I felt at home. I exhaled, thinking,  These people! They get it! Thank god.

Here, in the infinite skyline of the internet, I convened with my tribe.

My tribe in particular knows what it is like to watch blood roll down their stomach. They know the risk of chocolate cake and the power of a juice box. My tribe has a language of its own, with words like Bolus and Dexcom and Ketoacidosis. My tribe knows when it is necessary to crack jokes about dark and stigmatized subjects, because sometimes this is how we survive.

When your body attacks the cells on one of its own organs and you are taken to the hospital and essentially told that you now have to function as that organ yourself unless you want to die, and here are some needles and hope you have good health insurance because this thing called Insulin that is gonna keep you alive is expensive as shit and here are some rules for managing your blood sugar but you could also just set this list of rules on fire because, well, you’ll see… the situation is really just preposterous. Diabetes as a disease is absolutely ridiculous and absurd and sometimes I can’t believe that I do it every day. I wake up every day and try to be an essential organ. ?!?!?!? And so, I need this tribe to help me make sense of things. To wade with me in both the darkness and the light.

The deepest, truest connections are born through our personal struggles. Our singular experiences of loss, suffering, and sorrow turn out to be not-so-singular after all, and somehow we find each other. We are never, ever alone. I know how often this doesn’t feel true, which is why it is so important to say over and over and over again. 

I saw a Tweet yesterday that I found quite poignant (what a funny sentence to write). Someone was telling someone else about their recent Type 1 diabetes diagnosis, and the other person responded,

“I’m sorry you’ve joined us. But the #doc (Diabetes Online Community) is immensely helpful.”

I’m sorry you’ve joined us.

Oof. Heartcrunch.

But we are here.

A fellow PWD named Rick commented on my last blog post (about turning 25/ being diabetic for 11) and wrote:

“We are delighted you are here with us. Our world is richer with you as part of our tribe. I realize this is not a tribe that anyone wants to join. But it is a tribe that is glad you are here.”

Heartcrunch.

Then yesterday, during the Twitter chat, question 7 was:

I feel ___________ when it comes to diabetes management because ____________.

Gulp.

This was my very honest answer, and this was a fellow PWD, Heather’s, very sweet response.

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Heart.

Crunch.

 

None of us asked for whatever it is that we are carrying and cannot set down.

That could be a chronic illness or an unending grief or an addiction or a trauma or any number of things. What we asked for, perhaps, was understanding, or comfort, or hope in the face of adversity. We asked to not feel alone in this. We reached out a hand, and kind and knowing hands reached back. This came to mean absolutely everything.

Even as the circumstances that brought me (and all of us) to this place are less than ideal… for the tribe itself, I’m glad that I am here.