Sarah Grace

Sarah Grace

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Open Portal

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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.

 

 

Still here!

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Hi beautiful people,

This is just a quick note to say: I have not abandoned Coffee & Insulin (the beloved items themselves or the blog I’ve dedicated in their glorious existence.)

I’ve just stepped away as I sort some personal things out.

I go through seasons when I need to read, absorb, fill myself up. Intake seasons.

And then I have seasons when I need to release, and pour onto the page.

Sometimes, I have both at the same time, which is always lovely.

But right now… I’m mostly reading. I’m still writing–journaling in the mornings and beginning another writing class and opening up 5 new blank documents in Word every week for the beginnings of stories, but I’m not really writing them through right now. I’m in a season of intake–of listening, learning, observing, and rearranging things in my brain.

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It’s not just in my writing world, but also in general right now. I’m laying low, taking things in, not making an abundance of plans, and stringing the days together this way–taking the time and space to take care of myself in ways that are at once terrifying and necessary and important.

Instant things, like getting my wisdom teeth removed yesterday (more on that later / *swallows another painkiller*) and going to see a new endocrinologist last month (more on that later, too, because yay!) And then there are other things–habits, routines, entire ways of living–that unfold slowly and ask of me many deep breaths and walks in the woods and nights with no plans and late, lazy mornings.

I just wanted you to know where I was, and that I will most certainly be back. Maybe as soon as next week, if some unwritten thing begins to burn a hole in my hand, or maybe a little later.

I hope you are all well.

I love the emails you send me, and thank you so much for reading this little space I’ve carved into the weirdo land of infinite possibility we call The Internet.

Talk to you soon. Take care out there.

xoxox, Sarah

Teacher

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You might be wondering, my Herbal Medicine teacher said last Monday, as you sped down the highway after work, why on Earth you decided to take this class! It’s an hour away, and you’re tired. You don’t yet know the reason. But I’ll tell you– it’s not for nothing. None of it is for nothing.

She was looking directly at me, and speaking directly to me, as I was the only one in the class who had worked 9-5 then driven directly to the mountains, an hour away, for this class. I’d told her this as I arrived, apologizing for being 10 minutes late, head spinning from the low blood sugar I’d just treated with grape juice, which hadn’t restored my body and mind quite yet. She told me to help myself to tea, then seeing how frenzied I was, said, No, no, no, I’ll get it for you.  

We walked around the gardens in the last melt of daylight and she showed us all of her plants and said, Mind the fallen walnuts, we don’t need a twisted ankle. We tasted plants and bruised them. She showed us her apothecary. Amber glass bottles lined thin wooden shelves, rows and rows of powdered herbs the color of earth in clear quart jars. Everything felt like a secret, unearthed. This, I thought, taking it in. I want to know all of this.

How I ended up there, in that apothecary, in those gardens, how I will keep ending up there each Monday for weeks to come, is a long story. I can best sum it up as: I’m seeking something. Some unsung understanding. A purpose I can feel in my chest, but can’t yet call by name.

I’ve had a chronic illness for 11 years now, but it wasn’t until this past year that I started feeling like I had one. Feeling it marrow deep. Not all the time, but enough of the time to have been forced in the last handful of months to take a closer look at the way I live my life, the choices I make, who and what I spend my time with, the habits I’ve picked up along the way. This is a scary thing to do. It doesn’t take long to discover what could use some adjusting. Or eliminating altogether.

Chronic illness is a teacher. Some of us have to learn young.

Once I began to feel the weight of diabetes, the depth of it, and once I began to unravel the spider silk of a very intricate web, I felt swallowed whole. I felt lost. Illness. It felt too big to hold in my body. It felt too big for any of our bodies, individual and collective. It felt too big to speak out loud, or even write down. So I went to nature, because it is the biggest and truest and most alive thing I know.

Don’t be afraid to suffer—take your heaviness and give it back to the earth’s own weight; the mountains are heavy, the oceans are heavy.” –Rilke

Last Fall, I started going to the Blue Ridge mountains every Friday, as the leaves changed. Sometimes with my roommate and sometimes alone, climbing to the tops and sitting on thick sheets of rock for hours. When I didn’t have enough time off of work for that, I went to the James River, or Pocahontas State Park and walked in miles-long circles through the forest.

When my blood sugar is rising and falling and rising in an infuriating and sickening rhythm, I tell myself that my blood is just like the tides of the ocean. Always moving, always changing: high tide, low tide. Nothing of Life stays unchanged. This is the alchemy of nature.

We can try so hard to hold ourselves steady, but there are so many forces at work here, altering everything around us and within us. Perhaps the tide has tried a time or two to stay in place, tired of sloshing about. And yet, the moon has other ideas. This is the nature of nature.

I took a writing workshop with Cheryl Strayed last summer, and she talked about our “Dark Teachers.” The difficult experiences, people, and obstacles that inform us and shift us and bring us to our knees and break us open.

When she spoke of this, I first thought of illness. For years and years and years, I refused anyone’s suggestion that I might live the life I do because I was in some way informed by my disease. That perhaps I was brave enough to move to foreign countries alone because living with diabetes had taught me courage, had shown me with a swift hand at a young age how things can transpire. I refused the idea that my appreciation of this brilliantly brief life has been amplified by this dark thing.

No no no, I smiled my I Am Uncomfortable smile, This is just who I am. This is my nature.

Why would I give the thing that has made my life so damn difficult any credit in the beauty?

I’ll never be able to say how I might’ve been had I not been diagnosed with diabetes. I was just becoming, teetering on the edge of childhood, tender adolescence, when my body unraveled and I had to learn a new way to live inside of it. For many traumas or Defining Moments, there is a clear, defined line: Before and After, Death and Re-birth. But I can’t seem to see it that way. I’ve turned it over and over again in my mind, but it all bleeds together. A slow drip in the bucket of Growing Up.

But you know… I can’t think of a thing that, upon encountering it, hasn’t taught me something. To be alive is to be learning. I’ve had plenty of dark teachers, but thank god, I’ve had even more of the opposite. Some, like Cheryl, I can’t believe I ever met in person. I’ll never forget that. Some I see almost every day;  some I’ll never see again. But to all of them, wherever they are, I say Thank You.

Of course, all along, my Dark Teacher has been teaching me. Handing me jagged gifts. I just didn’t know it, or I didn’t accept it. I didn’t believe for a long time that there could be one speck of light in the darkness.

Yet, the moon has other ideas. This is the nature of nature.

And none of it is for nothing.

 

Clinging and Grasping

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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.

*

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.

*

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

So there is my gratitude list.

*

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.

*

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.

 

 

For The Tribe Itself

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.

 

 

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