Summer of rupture: On writing illness, the nuances of disability, and finding beauty

Body, my house, my horse, my hound: what will I do when you are fallen?

Body my house
my horse my hound
what will I do
when you are fallen

— "Question" by May Swenson

I’ve been breaking for years, but I finally came apart last summer—my summer of rupture.

It all started with inflammatory arthritis—axial spondyloarthritis—which I’ve had for over a decade. I was diagnosed by experts at NYU and the Hospital for Special Surgery in New York City after years of eye inflammation, fatigue, and spinal pain.

For years I was the youngest body in the waiting room. In the ophthalmologist’s waiting room—years before my diagnosis, when the first symptoms began in my eyes—I felt myself looked at by the other patients: She’s too young to be here. The others were older patients with glaucoma, all shaking hands and walkers.

At that point, I was still endowed with ableist programming that—when I think back on it—came from both ignorance and immature apathy. I am just passing through a sickness, I thought. I’m not a sick person. Just give me the medicine and let’s be done with it. At that age, I still saw the world as a stage. I was the main character. And I was untouchable.

Over the years, the disease moved from my eyes down into the rest of my body, as if it were a silent bleed-out. I began to feel things I’d never felt before.

As a child, invisible pain had always eluded me. When my grandmother talked about her arthritis, I thought pain must be like a god. If I couldn’t see it, was it truly there?

I contained the pain long before I became the pain. It was, for so long, just an abstract, a construct. It was happening to me, rather than within me. Of me.

2011

In my mid-20s, still without a diagnosis, I was performing regularly at The Poetry Brothel in a glitzy speakeasy on the Lower East Side. I was dressed up in lingerie and lace, reading poems to strangers in dark rooms by candlelight. But sometimes I’d feel something: An ache, a stiffness. I was inhabited by something I could not name. I never said anything.

I was drunk on the romance of it all, I’ll be honest. I so longed to be the ingenue. I wanted to get fucked up on cheap dive bar wine and paw at my lovers and smoke cigarettes in the rain and show up late to my classes and do whatever people do when they’re human and very young and the wild expanse hadn’t yet been dashed to bits.

Eventually, the renderings of myself in this world of glamour began to deflate. It got dirty with Regular Human Realities. The archetype was dethroned. It got lonely like the lights had been snuffed out at the end of the party. Eventually, the candles hurt my eyes, and bending down to pull up my stockings felt painful. Yet I was poor and clueless and mostly ignored it.

Pain followed me around the world. Pain was me in my birthday dress and me on some Borrommean island full of peacocks and me graduating from my Master’s program on the Javitz Center stage. For so long I couldn’t articulate it, could hardly believe it was real.

Is this pain mine? Is it mine forever? Like a child?

There were some nights when it was just the knees, and then it was the hips, and then it was the sacrum, and then it was like I hadn’t slept a day in my life. So, I persisted. I danced even though it hurt. I swam, my arms outstretched before me in salty seas, body long and open.

In those mid-2000s years, there wasn’t as much awareness around chronic illness or invisible illness. I had one friend who had an inflammatory disease, and everyone treated her like she was either a walking corpse or a wellspring for inspiration porn. Or they ignored it entirely. I mostly ignored it too.

Why couldn’t I have just asked, “How are you feeling today?” I have now learned that those few words are like gemstones glinting through dense wood. How it kicks the heart abuzz. How it alights with visibility. It’s so small, so humanizing.

For a long time, I mostly wrote poems around the pain, for it was still the beast in the stable. I hadn’t quite figured out how to make the ugly into something beautiful—as if the ill body was undeserving of the poetic. By the end of graduate school, I tried to work the body and pain into my thesis. I suppose this was the first time I started coming to terms with it.

When I finally got good health insurance and an autoimmune diagnosis, I felt like I’d been given the demon’s name. I could say it and shame it and conquer it, as exorcism. Yet over the years, the demon could not be conquered, even when I shouted its name into the dark.

For years, I tried to make the hurt stop with back-bending asanas. If I become flexible. If I become fluid. If I become strong. I let myself think I could find a doorway out of pain.

2024

I got married in June in Sicily last summer. It was sticky and stunning and audacious.

I recall my dress’s three layers of satin stuck to my thighs. My baby hair curled around my ears. Benjamin’s pale pink suit. The blue ceremony salon with its balcony doors flung open. I also recall the pain I brought with me to the Mediterranean.

Pain and I wore an ivory-colored gown with a boned corset. We drank a small glass of white wine before the ceremony, and we held orange fiori in our hands and we processed in the street—the colors of our guests’ dresses and linens like a trail of blooming flowers: Francesca in blue, Andrea in green, Elli-Rose in shell-pink. Me and my pain and my husband leading the way.

At the restaurant where we hosted our reception, there hung a dedication to Santa Rosalia—the patron saint of Palermo. Born in 1130, Rosalia followed the ascetic path, living as a hermit in a cave grotto on Mount Pellegrino. She is often depicted with lilies and a crown of roses.

I am nothing like Rosalia. I have desire and lust and a great big hunger for more, and yet I stood below her shrine with a huge heavy longing heart, asking, please let me experience my wedding without pain. Just give me this.

I came to all the gods and saints with feverish want. The night before, I begged Saint Michael at a nearby piazza for a pain-free wedding. And I begged La Madonna. And the sad, blue-eyed Jesus in the dark corner of Cattedrale di Palermo.

And I mostly got what I wanted that night. I danced past midnight until my feet bled. And afterward, I slipped into a bathtub as Benjamin smoked a joint, and I let myself be full of the great everything.

The palazzo we stayed in on our wedding night was silent except for the sound of me swishing around the water. Afterward, I pranced barefoot through the rooms, adorned in dancing shadows, light glinting off ancient golden frames hung in the parlors. I caught myself in the mirror. The concept of me looked back at me.

I wondered what it would be like if all of this could come easily, without the worry that one day my body would stop allowing me joy and mobility. I wonder what it’s like to worry about a paycheck and parents and human suffering without pain as the cherry on top.

Everything is so much heavier, including the self-awareness of my own relentless, boring, bullshit pity party.

We left Sicily for Malta, and my body mostly lasted through Malta, through its ancient rubbled walls, known as Ħitan tas-Sejjieħ, and through its salt pans, which I dipped my fingers into. Through its tiny fishing villages peddling handmade lace wares. Through its cafes where I stuffed my lips with pastizzi in the boiling light. And through the fortified city of Mdina, where I wandered for hours come day’s end when all the tourists had left and I had the city to myself.

I came upon a small gathering, women chant-praying in a chapel, and I watched fans blow on their bodies in the divine heat.

This was my life. This was my aliveness. I was here. And I made a point to acknowledge that, even as my body slowed down.

Today.

God, summer destroyed me.

By July, by the time I’d gotten home from my wedding, I could no longer walk. Tongues of fire licked down my legs and feet. Or like stepping into an ice bath. Shocks that immobilized me. Electric zaps that felt like contractions, endless, seismic, moving from my spine down.

My rheumatologist told me my inflammation had impinged my nerves. We try medicine after medicine. Oxaprozin, meloxicam, steroids.

I moved and swam and tried to push it away. It got worse.

But it wasn’t that at all. An emergency room visit—and a later MRI—determined that I’d broken my back (bilateral pars breaks at L5-S1), that I’d herniated a disc, bulged a disc, and that my L5 vertebrae had a stage-2 slip forward (known as spondylolisthesis). off of my S1 vertebrae. My nerves were compressed due to spinal stenosis.

The why is unknown. There was no single trauma, just a slowly degrading spine over time, possibly due to a small congenital fracture that gradually led to an entire downfall. The why almost doesn’t matter. It’s here now.

I thought about how I pushed myself in Sicily. How I pushed past the pain in some attempt to live in the beauty and the joy. But also all the times over the years when my body gave out: On my birthday in New Orleans when I had to crawl home. In Budapest when I had to give up a night out. Me at my mom’s house, on her floor crying in pain.

I told the doctor I hadn’t known a day without pain in over a decade.

Degenerative chronic illness forces you to be in a place of loss, perpetually. You lose money, for one. And time. Hiking without pain or swimming in full extension. Or dancing in your favorite heels. Or standing on a subway car for just a few stops. Or carrying a backpack through the airport. Saying no to amusement park rides. Saying no to a long car ride with friends.

Not knowing if the restaurant you’re going to will be good because of the chairs. Not knowing if you can keep up with your friends. Not knowing. Not knowing.

Then you lose weird things, like the ability to sleep on your left side, or twisting to grab something behind you. It’s the mundane things. The things no one acknowledges. The things we take for granted.

Here’s the part where I skip the grief cycle, because that deserves its own story.

But in the loss, I have tried to acknowledge what hasn’t left yet. The memories of summer, the body’s ligature holding me together when its bones are broken. The people who remain patient. Access to care. The wherewithal to know that even in degeneration, there are peaks and valleys—and ways to stave off the beast.

Since last summer, daily physical therapy has helped. Modification of literally everyday movement. Medication. Injections. Walking daily has helped me stay strong and teach my body both its abilities and limits. Taking everything away and then reintegrating activities one by one has slowed me down and taught me what works. Writing about it helps. I even found a way to work it into my new book, Saint of.

Yet the pain remains. It’s been tempered, yes. But it can be triggered. Even after a future surgery, the neurosurgeon warns that the pain could remain. Or it could disappear.

And that makes me wonder, who am I now, with my pain? And who might I be without it? Who could I be? Will I be returned to my younger self—this time, with a sense of empathy? Will I still notice the beauty if I don’t have to slow down? Will I still invoke the saints? If the pain goes away, will that also be a kind of loss?

And will I still be me—whoever I am?