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.