I didn’t write shit this year.

I published a short story I wrote in 2020 and a few overly eager blogs pre-drafted from last fall. I verbally abused my finished manuscript but made no edits. I pulled up a list of brainstorming ideas and attempted exactly zero of them.

What happened?

Yesterday, I tore out a scrap of notebook paper, shook out a box of Crayola, and wrote down everything I could remember about 2021. I had to feel my hand write my history. I needed to see, in burnt orange crayon, that I didn’t just stagnate for 12 whole months.

But even after looking at my 2021 Accomplishments™, a list my load-bearing therapist (goddess bless her) would describe as a year well-lived, I’m left empty and cold.

Nothing feels real.

I can’t count down all the good things of this past year. I can’t wish for a happier, healthier 2022. I can’t toast to a future yet unwritten because I’m stuck in a scream from spring 2020. And it’s not because of this damn pandemic. I don’t want to talk about the fucking pandemic.

This blog is about pain.

In February 2020 — or maybe March; I can’t remember the date — I woke up, rolled over, and swallowed sour vomit. Tears stained my cheeks. It wasn’t even 8 am but my body ached from the strain of… sleeping. I stumbled through the day, somehow.

That night, I drifted off with clenched teeth. The world shut down a few weeks later, and I knew I wasn’t the only one clenching, afraid of what fresh hell the morning would bring.

But unlike the waves of this virus, my pain never let up. I need to make a dentist appointment because it’s been almost two years of bone-on-bone molars through restless nights… I just can’t finish dialing the phone. Not another doctor. Not now. Not more pain. I’ve spent the past two years waking up in pain, falling asleep in pain, bargaining with pain…

The devil better not come knocking because I’m ready to make that deal.

Returning to my Crayola list of 2021 Accomplishments™, number three is moving all my prescription bottles from the kitchen cabinet to a shaky arm’s reach on my bedside table. That’s a #win, right? Numbers seven through twenty-three are a list of all the doctor’s appointments I scheduled and actually showed up for.

#wellness #selfcare #positivity

Okay, I’m being bitter. Still, it’s not an exaggeration that doctor’s appointments and the Russian roulette of a busy but socially distant waiting room overwhelmed my Google calendar this year. Even my outfits depended on whether an overworked phlebotomist would need the crooked vein in my left arm (unfun fact: every chronically ill patient has a preferred vein). Function still rules my closet, not fashion, and I’ve worn rainbow compression socks and a slightly stained Schitt’s Creek sweatshirt for weeks days.

Yeah, it needs a wash. Hell, I need a good wash, but I can’t bring myself to take it off because I hate this body. That’s not hyperbole. Even Instagram’s positivity accounts with their pastel pallets and googly-eyed plant cartoons can’t sell me self-love anymore.

I hate this body because it’s killing me.

Maybe I should have scribbled “started showering in the dark” as one of my 2021 Accomplishments™. Because I only shower at dusk in an unlit bathroom, like a reclusive vampire hiding her fragile skin from the sun. I knock shampoo bottles off the shelf as I flail and lather and hiss at the water that’s always too hot or too cold. Touching my skin without a sponge or a soapy shield makes me recoil. What use is my body if it can’t keep my soul safe? How can I possibly look in the mirror at this wobbly flesh prison and feel anything other than contempt at its utter failure to resist the poison flooding my liver? Why must this flaw in my DNA strike match after match against each nerve, lighting them like fuses? Tick, tick, tick… the intermittent bomb will explode again, but I don’t know when. My diseased body doesn’t believe in the courtesy of schedules and routines. It explodes in waves of scarlet pain whenever it fucking wants, damn all my plans and hopes and dreams.

So why even make them for 2022?

No, I avoid the future like I avoid mirrors unless I must use them to fake vitality and happiness with extra blush. I’m not ready to see Death reflected on my lips, under my eyes, in the deepening grooves encircling my nose. I invested in glue-on eyelashes, and plumping lipglosses, and every cosmetic tool for faking fine-ness, for myself first or whatever, but really for the world because I can’t be “that sick girl.” Please don’t make me that sick girl. I won’t allow it.

I’m still Elle, right?

I should have seen how my cosmetic magic would backfire. As every chronically ill American knows, if you don’t look sick — if you aren’t actively bleeding out, or missing a limb, or lying prone in your bed until Death steals your last breath — then clearly you aren’t that sick, you lazy piece of shit. Get back to work.

If only I could. But I didn’t write anything this year.

Nothing. Nada. Zero. Zip.

Can I still call myself a writer? Maybe not. Our productivity-obsessed country is cruel to those who can’t produce, perfect, and above all, profit. We’re supposed to peak at 25, then happily drown in the crows-eyed crowds of irrelevance.

And I’m on the wrong side of… everything. There’s nothing to do now but wait for Death, yes? But Death is already here. She’s been sitting on my shoulder since that February morning, staring, expecting, but ever-patient for something beyond my lamentations.

In my lowest moments, I’ve confessed some pretty ugly things, and I know Death listens. Like how sometimes I wish my disease had a ribbon, an awareness month, and maybe a cringy social media challenge. People understand those diseases. There’s a buffet of treatment, and we rally around their bodies, preparing for the “fight” that will give them back their health, their normal, their future.

If I had a ribbon, maybe I wouldn’t feel so alone.

But my chronic illness — like so many other under-funded, under-researched, and under-diagnosed genetic illnesses — is an orphan.

It confounds researchers and scares my medical team. It doesn’t have a marketing campaign or a meal train team because it isn’t a battle to be won but a state of sickness. I don’t have a ribbon. Instead, I have abnormal lab tests, a list of referrals, illegally-large needles and you’ll-be-fine biopsies, itchy, swollen lymph nodes, and a neurotic, fat liver.

And yes, pain. Unrelenting pain.

Jesus, how is it December 2021? I’m tired. I’m so, so tired.

I miss the freedom of health. The freedom to say yes. The reliability of a functioning liver. We’ve all been sick these past two years, but I am still sick. I didn’t get better. My illness didn’t come from a pandemic but from within me, and so it’s still there. What happens when sickness can’t be beaten? When it’s in your DNA? When it’s part of who you are?

I don’t know. But I do know that over the past two years, disease became my constant, my baseline. My body holds an ever-diminishing number of healthy days, and they’re rationed off to the highest bidder. Who do I give my energy to? To myself or to others? Where do I spend my finite time? On hobbies or chores? Responsibilities or pleasure? The books I haven’t read or the books I haven’t written?

And by god, can Death stop staring, please. It’s freaking me out.

I look at my list again: my clumsy 2021 Accomplishments™ of complaints, failures, cancellations, and bad days. They’re louder than the good stuff. Like, I wrote them bigger and darker than the good things because I don’t know how to live with illness, in spite of illness. I’m just coping in this cocoon because it wasn’t supposed to be this way.

You know, I wrote a list like this in 2019, too. I had plans then, big plans. Vision-board plans. Three, five, ten-year plans. I’d already gone through the catharsis — so I thought — and the darkest hour was behind me. I’d made the third-act, life-changing decisions in my career, my education, and my personal life. I even cut myself some really sweet bangs. Everyone knows that when a woman cuts bangs, shit’s about to go down. I knew I was sick, but it felt manageable then. I controlled it. I could push through then, but I can’t anymore.

Over the past two years, time sped up and then slowed to a crawl. The clock twisted sideways, the hands spinning in endless circles. And like the rest of the world, I’ve been waiting for a return to normal.

But what if there is no return to normal? What if this is it: our new normal. My new normal.

Ah, fuck. It might just be.

Tomorrow is January 1st, 2022, and as good a time as any to just fucking say it. And I’m going to say it out loud so Death can hear it too and maybe stop staring.

I’m grieving.

I must let go of the life I thought I’d have and embrace the uncertainty of disease. I spent the past almost two years in a disquiet denial, but it’s time to emerge from the cocoon an imperfect butterfly who makes imperfect art with her imperfect body. Damn my old dreams, I’ll make new ones. And damn my old unfinished stories. I’ll write new ones, better ones, rawer ones.

I wrote this, after all.

And I’m definitely adding it, in burnt orange crayon, to the list of 2021 Accomplishments™.