What I grieved instead.

It was unusual.

I felt sad and alone, until panic overtook and then I was angry. I paced the smallness of my apartment, picking up pillows and hurling them at the floor. I began to overheat, and to flail my arms, and finally, FINALLY, I realized the only thing I could do was lay down on the couch and go to sleep. Before I did I spoke to myself in a quiet voice – “It’s OK to be sad,” I said, over and over again, until my heart rate slowed and my eyes closed.

I awoke hours later, all the lights on and in the same curled lump I’d surrendered to. It was the middle of the night, and what I felt in its exquisite hybrid of ache and emptiness, was grief. It just wasn’t about diabetes. It was about the 2008 death of the actor Heath Ledger.

I told you it was unusual.

To be clear, I didn’t personally know Heath Ledger. I admired his acting, and his beauty in the way of anyone who appreciates excellent work and charisma might. So you can imagine my surprise when, two days after learning I’d gained rapid weight from improper insulin management and would be starting on a pump, the horror wave of feelings rode in on the credits of 10 Things I Hate About You, and not, in fact, the $50 co-pay to my endocrinologist’s office.

One Friday evening in late October, I spent an hour at a neighborhood urgent care.  It was a few minutes before 10pm when I felt like my apartment floor was rising up to meet my forehead. I blinked and the dizziness stayed. I put on my coat and boots and sped-walked clunkily around the block and up the street to CityMD. A nurse helped me into a patient room, and 2 nurses helped me out to a cab later, after the doctor recommended I go to the emergency room. Urgent care didn’t know what was wrong, but the ER could run more tests, they said. I felt terrible. “Ok, I’ll go,” I said.

But when the cab pulled up to the emergency room entrance, I climbed out and stood on the sidewalk. The night was cool and breathing the air helped my nausea. Going inside meant paperwork, blood work and a physician telling me these symptoms happen, sometimes, with diabetes. It meant a possible cat scan and a urine culture and a if they happened and got worse to follow up with my endocrinologist. Going in meant curling up under the fluorescent lights, the beeps and voices of a sleepless, nightshift New York hospital in the background.

I went home. I would be alright without the answer.

The body shutting down is within the natural order of things. Organs failing, as they will all fail, eventually. I suppose what I wanted was to mourn something happening in surprise order, but the relative ease with which you can make do with diabetes and carry on did not align with the tragic disappointment I felt in my chest. So I latched onto something else, and cried instead over the death of a talented artist. One from whose life I was completely removed and felt deep shame for co-opting the loss around it as the bizarre source of my sadness.

Either that, or 10 Things I Hate About You is the greatest fucking tearjerker of all time.

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You’ll forget you even have it.

The first declaration I got from a diabetic on the disease itself was that I would soon forget about it. We’d been put in touch to discuss our mutually failed organ – namely, so I could ask him about how to handle my new life without a working pancreas, and he could tell me it was all going to be OK. His email was so earnest and enthusiastic, and his insistence that I would be just fine fine fine so unwavering that I hated it, and him, immediately.

This was not his fault.

November 1 was the first day of Diabetes Awareness month. I didn’t know this was a thing until a few weeks ago, and I didn’t know I would actually care until it arrived.  I combed Twitter for celebrities saying important things or someone to whom I could pitch an Important essay, or a way to become famous for being diabetic. Soon after I tired of the hashtags and the choreographed dances to raise public awareness. I closed all the tabs with a sour look on my face. Sometimes I want to shove my reality to the front of the line at the precise moment I want to appear serene and poised. I want everyone to know how serious it is and I want to act as though nothing’s the matter. I want medical attention at my immediate disposal, and I want to never feel pain again.

“Someday you’ll forget you even have it.”

Probably not. But you might.

 

 

 

A few books someone should write, but no one would read.

I love the self-help – excuse me the PERSONAL GROWTH – section at Barnes & Noble more than I should. The idea that my problems can be divided into chapters and fixed over the course of 26 steps is vastly appealing, absurd as it may be.

It’s not that there’s something bad in believing your situation can be conquered, it’s the tired way in which these ideas are marketed.

The conclusion is always “I made it! And so can you!”

“I finished and now I never have to [Fill In The Blank] – date! exercise! diet! succeed! again EVER.”

Things Are In Between. No One Wants To Hear This.

Zero Copies Sold.

The Mundane Necessity Of Cleaning Your Apartment At Least Once On A Weekend, Sometimes.

Look At All The Things I Am Doing To Manage Biology’s Decision.

The Really Fucking Tedious Process Of Dealing With A Not-Terminal Illness Every Single Day.

My experience is not I Battled, Then Won. It’s I Reluctantly Stopped Drinking And Eating Pizza & Frankly That Still Doesn’t Help Me Feel Amazing All The Time.

It’s I’ll Do All The Things I Said I’ll Do Today, Just As Soon As This Nausea Subsides. Nope, Actually I Won’t.

If you’re a literary agent reading this, call me. I know my mom will buy at least two copies of all aforementioned titles.

I do not have big plans for the weekend.

But thank you for asking!

5 months ago, the day before Easter, and in the middle of inhaling a piece of ice cream cake, my phone rang. I ignored it, because it was my doctor’s office and I thought it was weird they’d call on a Saturday. Then they called again.

“Ugh,” I thought, excusing myself to the other room. I answered with a bit a tone.

“Caira, your labs are back. Can you come in first thing Monday morning?”

Now, I’m not sure if you’ve ever received this kind of phone call, but nothing desirous ever results from this line of questioning. The reason you’d be asked to come in right away is never because you’re so great and they just miss you, or they accidentally overcharged you a thousand dollars and want to give you a refund. It’s like when your boss needs to see you at the end of the day in his office, and someone from HR is already in there. Or when you text someone after a second date, asking how their day was, and they reply, “good u?”.

I actually couldn’t go in to the office, first thing Monday morning. I was leaving the next morning at 5am for Seattle, embarking on a weeklong road trip down the Pacific Coast Highway.

I explained this to the doctor.

“Caira, your blood sugar is very, very high. [My first name was being used a lot here?] We need to check how much insulin your pancreas is making.”

“Um, ok.”

In a 2013 essay for the New Yorker, author Meghan O’Rourke wrote about the strangeness in telling an illness narrative without an inception. The piece was specifically about autoimmune diseases and the slow, creeping way they moved in to the body and mind over a period of years. When I read it, it was over breakfast, and at a time when late night Google searches for phrases like “headache and dizziness”, or “symptoms exhaustion nausea” had taken over my evenings. 

 O’Rourke said “Illness narratives usually have startling beginnings — the fall at the supermarket, the lump discovered in the abdomen, the doctor’s call. Not mine.”


Not mine.
It was this phrase in particular that stuck with me, and would eventually resurface when I discovered I had Grave’s Disease in the fall of 2014. 

The hunt for Grave’s  was awkward and painful – Months of insomnia and weirdness and twitching, proceeding years of diarrhea and blood sugar fluctuations. It appeared, finally, one humid and anticlimactic August morning.

If Grave’s Disease had been Prince William’s courtship of Kate Middleton (get on with it already), then Type 1 Diabetes was definitely Rob Kardashian’s of Blac Chyna. (Wait, WHAT?)

And so I stood, phone in hand, overloaded with sugar and disbelief, for just a moment, staring out the window into the street. Then I turned and left the room, and sat back down at the dining table with my family.

 

I’ll dance at your wedding.

Two of my favorite people in the world married each other last night in Philadelphia.

Kimpel-Philadelphia-Loews-Wedding-Photographer-046

The occasion brought together a collection of loved ones from different points in life. We met on the dance floor in sweaty, joyous circles. Time had passed but for a few hours, none at all.

A few times, I nipped up to my room for extra glucose tablets, and to check my blood sugar. I didn’t eat the cake. I switched to water after a glass of whiskey.

One of the best parts was replaying it all today. The couple’s vows to each other, and the warmth of reconnecting to love I’d never lost. Reopening to friends I hadn’t seen.

It looks a little different now, than when it all began. It is a little different now, than when it started. But the essence remains the same.

What to do when your pancreas is an *sshole – a guide

Make two lists.

The first: All the people you don’t want to talk to.

It should include, but not be limited to:

  • the bro whose grandma has had diabetes foreverrrrr and she’s like, fine dude
  • anyone using the combination of “journey”, “healing” or “embrace” in a single sentence
  • the colleague prepping for vacation by sharing photos across social media of her #fitlife
  • the LinkedIn contact who wants to get drinks and catch up for real
  • Gwyneth Paltrow

The second: All the people you do.

I started this blog because I thought it’d be funny. Not autoimmune disease necessarily, but my perspective on it. At the time, I had one condition (grave’s) and a few weeks of dealing with it by name. I thought if I could figure out the parts to make light of, I would rise above the mediocrity of its existing literature and become its sardonic, witty authority. This was an inaccurate assumption.

Two years shy of that original diagnosis and I have two others to add – Type 1 diabetes and celiac. I’ll freely admit the celiac bit is almost funny, if only because I’ve spent so much time scowling at consumers of the gluten-free lifestyle. In the case of diabetes, the challenge of my wannabe humor becomes quite clear.

I’m uncomfortable.

It doesn’t feel funny, or fine. It doesn’t feel tragic, or fatal or profound. It feels tiring and disappointing and ongoing. It is a chronic narrative with occasional crises. It feels empty and boring and viceless. I feel empty, and boring and viceless. My day revolves around a little meter and the numbers it sends to the screen.

Sometimes I pretend it doesn’t exist. Occasionally it is all I can think about.

It is so much, and also so little, at the same time.

There’s Insulin In My Refrigerator

And I have to use it.

Didn’t see that one coming!

Sometimes, when you have one autoimmune disease, there’s a likelihood of adding another. Like with tattoos. Or children.

Where I had one, I now have two.

Like this:large

But instead of souls, think “diseases.” And instead of heart, think “Caira!”

Latent Autoimmune Diabetes in Adults (LADA, if you will) is Type 1 Diabetes’ slow-creeping, over 30 cousin. My doctor told me she sees one LADA case per year, and it looks like 2016 was My Time. To me this suggests I should be compensated. In reality, it means there are insulin injections and a drastic reduction of: carbohydrates, happiness sugar & alcohol.

It means I look at my *Luna & Larry So-Co No Dairy Delicious ice cream bars and think, “you’re stupid.”

It means I scowl as I walk through the grocery store, judging everyone in the gluten-free section. Fucking hipsters. Fucking health-conscious hacks drinking black pomegranate juice out of a mason jar, working on their craft.

Because here I am. Stockpiling glass bottles. Blending shit and taking about it. The only thing worse than someone who drinks kale smoothies is someone who previously complained about people who drink meadows for breakfasts and now has to do it.

It means I’m occasionally just a melancholy, grouchy,  Vitamix-wielding diabetic.

It means I am hungry.

It means the first time I inject myself I see the person in the mirror, pinching her belly flap, shirt tail in between teeth, holding an insulin pen in her right hand. How the fuck did this happen? I can’t do it. I pace around the apartment. Everything is saying this needle DOES NOT BELONG HERE. I saw Requiem for a Dream. I know where needles go, and where they do not.

It means I am overwhelmed.

It means, also, there is more to be written on the subject of abnormal immunity.

*No offense to you, Luna. And Larry.

Not it.

On a class trip in the 7th grade, * Nathan * and I started dating. Of course, it was never referred to as dating, and the entire 36 hour cohesion unfolded through a series of conversations between our respective comms managers, or, as they were known in 1997, friends. At some point in our relationship, I was gifted a heavy chain necklace, purchased from the lone souvenir shop on the Florida Key to where we’d been bussed to learn about The Environment.

Perhaps it was due to our fumbled attempts at in-person communication, or the fact that we never really liked each other before we became a couple – but shortly after the necklace was delivered, Nathan and I broke up.

That evening, a member of my PR team, Courtney, advised me to destroy the necklace.

“Throw it into the fire,” she suggested. And there was a fire. A big one, blazing in the middle of the tropics, for all us adolescents to sit around and discuss the sexual experience we didn’t have.

The gesture seemed a little much, to rid of a perfectly good choker into a bonfire just because * Ben * couriered over news and a smirk that Nathan and I were no more. Plus, 45 minutes earlier marked the first time I’d ever received a gift from a male non-relative.

“I just – I don’t know. Do I have to?” I asked. It was all happening so fast. Life! Love!

“Yes. This is it.” Courtney’s chin dropped and she fixed her steely eyes on me.

And that was it, because I chucked the jewelry into the blaze and had nothing else to do. It was too dark to see it burn and I flopped my arms in the air.

“Welp!”

I flopped my arms above my head on an August morning in 2014, once. I was standing outside the endocrine association of the West Village (confusingly located in Chelsea) and I was sweating in the heat. I’d just been told I had Grave’s Disease.

“Welp!”

I had an answer now and that was it. In the afternoon I began swallowing pills to treat a disease I’d learned about that week.

Courtney and the gang dismantled and as I headed back to my bunk I saw another of the class couples, sitting on a log together, giggling in each others’ faces. Something in my heart pinched. I was suddenly aware I was missing something that I didn’t know how to explain.

Those floppy-armed, stricken versions of reality cried to sleep both nights, bittersweetly unaware that wasn’t it. Not even a little bit. Not at all.

99 theories but the truth ain’t one

A few things I’ve known to be true, over the last 18 months or 32 years:

Those charges on my credit card are identity theft

Grave’s Disease has made me crazier

I should go gluten free

I will go gluten free, and it will be life changing

That croissant was delicious

Grave’s had made my anxiety worse

Perhaps it’s been Grave’s the entire time

No one gives a fuck about gluten

Everything that’s gone wrong in life is related to my inherent autoimmune dysfunction

I am dysfunctional

There is such a thing as Graves-related dating choices

Missy Elliot and I should walk for the cure

Inspiration will strike and when it does, I’ll write a novel about Grave’s Disease

Inspiration will strike eventually

My doctor doesn’t understand me

I should send her some of the articles I’ve been reading on the Internet

I don’t feel like working because I have Grave’s Disease

Grave’s Disease is the gluten-free non-Celiac of its disease friend group. Boring and anti-climatic.

Maybe I can win an award for Grave’s Disease

That’s definitely a thing

**

h/t to the fabulous @feministabulous for this post’s headline + relentless support

 

 

My Theory of Everything

Now that I feel mostly well, the times that I don’t mean that I, along with that trusty, timeless text on human anatomy, wikipedia.com, are up until 2am “diagnosing” the autoimmune epistemology of critical conditions like “rash”, “indigestion” or “groggy”.

In the early days of December, I returned to my beloved New York after five weeks traipsing through Madrid, Hong Kong, Tokyo and Seoul. I was delighted to be home. I was overjoyed to almost need a winter coat.  I was acutely aware something was amiss.

IMG_2324

Seoul does offer a nice view, however

 

A comprehensive, after-midnight Google investigation gave me the answer I was looking for. At the tenuous age of almost 32, I’d obviously developed lactose intolerance. It obviously stemmed in part from my Grave’s Disease, and in response I would adjust my diet accordingly and start living my best life. Happy new year!

Several days of non-improved misery later, I went to the real doctor – a gastroenterologist with degrees – and he said, “This isn’t your fault. It’s likely a bug you picked up somewhere. Have you been traveling lately?”

“Yes.”

Oh.

Oopsie.