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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.

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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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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.

 

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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.

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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.

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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.

 

 

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This week, my life turns 25 and my life with diabetes turns 11 years old.

24 (and 10) was a strange and difficult and winding year… but here I am. Loved and alive. The only thing I have room for is gratitude.

My 10th year with diabetes was the most challenging yet. It was the year I started to actually feel like a person with a chronic illness, it was the year I couldn’t just shoulder my way through highs and lows; I had to learn how to slow down. I had to learn to pay attention. I had to (I’m still definitely having to) learn how to take care of myself. Sometimes (often) what I want and what my body needs are very very very very very very different. The past year has been a battleground of body and mind–a self, divided. Now I have to do the slow and intricate and scary work of trying to be a whole person.

My body turns 25 this week and all I’ve been able to think for days is:

Thank you

Thank you

Thank you

Thank you

I’m sorry

I love you

I’m trying

Thank you

It’s natural to be sad and angry and scared. Chronic illness is exhausting and annoying. It can feel depressing. It can feel isolating. It can feel debilitating and overwhelming in its endlessness.

But hello, goddamn, I’m alive.

During my 24th/10th year, I climbed a lot of mountains. Sometimes by myself. I wandered through forests, swam in waterfalls and creeks and rivers and the ocean. I camped in the middle of nowhere with my friends. I saw a dozen stars shoot across the night sky in Big Sur and drove down the jagged California coast with friends from Australia and New York and England. We learned from one of our favorite writers, we wrote, we watched the Pacific Ocean churn. One evening, my friend Kelsey and I raced though the city of Richmond to make it to the best lookout spot to watch the sunset, laughing the whole time. We made it. I sat on a lot of porches with a lot of friends, got a new job, ate a lot of almond butter and Tex Mex. I took writing classes, wrote down the hardest, truest things I know and read them out loud to people who were really listening. I quit drinking and unquit drinking and semi-quit drinking again. I watched a meteor shower with my friends on pitch-black Hatteras Island. I went to a psychic who changed the way I perceive everything. I taught myself how to embroider, booked a trip to New York for the fall, and paid my rent on time every month. I read books that altered the way I see the world, then in Portland, unexpectedly got the chance to meet two of the authors and tell them how much their writing meant to me. I met people who, within weeks of knowing me, reached out their hands to help me. I said Thank You and I Love You every single day.

25 years is a long time. 11 years is a long time, 1 year is a long time.

All I want to say, over and over and over again, forever, is this:

Dearest Life,

Thank you and I love you. I am so fucking grateful for it all.