A Crushingly Mundane Wonder

On the One Thing We All Actually Have in Common

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A 39-year-old Rebekah sits in her wheelchair next to her 75-year-old mother who is on her knees so they are level. Rebekah tilts her head toward her mom's, her temple against her mom's cheek. They are holding hands, making a heart shape with their arms. Behind them, the kitchen in the house Rebekah grew up in.

When I talk with my mom on the phone, our greetings follow predictable patterns.

“How’s your pain today?”

“It’s more of a murmur, not screaming.”

“Have you taken any pain pills?”

“I have so much on my plate today – I took them first thing.”

“You think it’s a UTI?”

“I don’t know. I’ll see if I can make it to Friday. I hate to go in only to have them tell me it’s nothing.”

Either party could play either part. We’re two old ladies on a sitcom – a parody of the wrinkly bitties chatting about our arthritis over tea – setting the stage for the joke so everyone can laugh at how boring we are – how singularly obsessed with our ailments, our aches and pains.

Crip time is often imagined as a pace that exists outside of the relentless push for faster, faster, faster, get it done, do-more-in-less-time culture we’re living in, but lately I’ve been feeling another branch of crip time – the timeline that exists outside the bounds of expected birthday milestones or a linear trajectory of aging. In “Six Ways of Looking at Crip Time,” Ellen Samuels writes,

Crip time is time travel. Disability and illness have the power to extract us from linear, progressive time with its normative life stages and cast us into a wormhole of backward and forward acceleration, jerky stops and starts, tedious intervals and abrupt endings.

I’m nearing 40, but in many ways, my body’s age feels less like my peers’ and more like that of my mother’s 75-year-old body. We ache. We’re in pain. We marvel over the slow breakdown of our organs. We tally our falls. We discover injuries on our bodies without clear origin stories and track how many months it takes for them to heal. The cliché laugh about old age is how mundane the conversations become, but I dare any human to witness the slow decay of their own body without obsessive attention. Like expecting the captain of a ship to offer witty banter while his vessel slowly, slowly sinks into an immense black ocean. Or waiting for the caterpillar to engage you in philosophical discourse while it slowly melts into an entirely new being. What buffoonery – to expect anyone to be anything other than preoccupied as we witness our own transformation.

But my body doesn’t just catapult me into the timeline expected of old age. I find myself yanked backwards into a timeline that overlaps with my young son as he gets acquainted with his body for the first time. I watch him and relate to the effort it takes to get dressed – wriggling and writhing his body just to pull those pants over his bum while keeping the seams straight. How easy it is to wet his pants, even after he thought he’d mastered the skill.

A photo from above, Rebekah's son rests his head, hair long and blond, against her belly. His hand rests on the top of her legs, stretched out across the bed.

One day, right in the middle of that inevitably messy stretch of potty training, I hear my son parrot an idea I’ve heard many times. “Only babies wear diapers!” Sometimes I hear this phrase from the mouths of other children, but I’ve also heard it from adults as a way to incentivize toilet training. Shame is an effective motivator. But it’s not just the words – it’s the tone my son copies. I’m sure you can hear it in your own mind. Mocking. A harsh twang that lands like a slap. I whip my head up, “Not true,” I say, instinctively, like a weapon I draw on reflex against an incoming threat.

Rebekah stands in front of a mural in a ruffled dress, smiling at the camera with a closed moth, chin down. You can just make out that she's standing with a walker.

I’m eight, standing in line for recess, gripping my walker. I don’t walk often, and the sensation of standing feels novel. I enjoy being eye level with my peers. I’m wearing a thin green dress covered in tiny white polka-dots. There are ruffles down the front and around the hem. I rock my torso back and forth, watching the skirt brush over my legs.

“You’re wearing a diaper,” the girl behind me accuses loudly. Her voice sears with something worse than disgust – is it hate?

My entire head bursts into hot, shameful flames. My heart beats hard against my eardrums – wild thumping like it’s fighting to break its way out. I stop breathing.

Because of my limited feeling, it is taking me longer than my peers to learn to control my bladder, and, in the middle of second-grade, I’m still a ways off from figuring out how to use a catheter to avoid accidents. I’m not proud of this, but I haven’t yet learned to be ashamed of it.

“No, I’m not,” I say quickly, fearfully. I don’t turn around to look at her.

“Yes, you are. I can see it through your dress!”

“I’m not,” I insist. I’m not, I’m not, I’m not, I’m not, I continue to swear, even when the accusations end. Even when I’m by myself.

When I’m twelve, I sit in the car as we drop off my grandma at her house. I watch her get up slowly, her body always always in pain. She walks up to her front door, taking one intentional step at a time, head held high in her taupe dress, scarf tied around her neck, pearl clusters clipped onto her earlobes and a spot on the back of her dress announcing to everyone in the car that she had wet her pants.

A polaroid photo of Rebekah's grandma next to a cake with lit candles. She is wearing a long pink dress with a belt and rolled up sleeves, a white beaded necklace, and her iconic clip on earrings. Her hair is short and gray. She's looking at her cake. This was one of her last birthdays.

When I’m 36, still wearing pads to catch my postpartum bleeding, our tiny baby tucked into the carseat, I drive my husband home from the hospital. He’s recovering from the second surgery he’s had after his colorectal cancer diagnosis, and on his first night home, I see him sit on the toilet for hours – through the evening and into the morning. Finally he comes back to bed, dizzy with fatigue. It’s minutes later when he rushes back to the toilet. I call my dad in the early morning – “Could you bring us some diapers?” I ask, voice thin and high. When he arrives an hour later, we almost cry with relief as we rip open the package with the iconic, punchline-of-a-word printed across the front – “Depends.”

Rebekah sits next to her partner Micah who is lying in a hospital bed recovering from surgery. He is in a green gown with oxygen tubes in his nose, a blood-pressure cuff on his arm, and IV in his hand, and bands on his wrist. Rebekah has one hand around his arm, the other on the top of his head.

“Actually,” I say to my son, “lots of people wear diapers. They are a great tool when you need them. Diapers have helped me and your dad when we needed them, and not just when we were babies.”

“Oh!” he says, genuinely surprised.

Every time I go to the hospital, they put a neon orange band on my wrist with FALL RISK printed in all caps. For a long time, the drama of the blaring font and the neon declaration made me laugh – WATCH OUT FOR THIS ONE, SHE’S ABOUT TO GO DOWN!!! – but lately, as the falls have been more frequent, I’m starting to worry about the one that will result in a broken bone. Lurching ahead of the typical timelines, I am already thinking about how I will stay out of a nursing home when my body inevitably requires more care. I am ancient. And also, I am always rushing to the bathroom, wiggling back and forth with lemon-yellow electricity, and I do not always make it. I strip off my wet pants with the same swift motion I use to pull off my son’s leggings when he doesn’t make it. I am yanked back in time, parallel with my toddler.

Rebekah lies on her side next to her new baby. He is wrapped in a blanket, holding onto her thumb. You can see her belly, still stretched out form when he was living there, and just make out the tops of her mesh and padded, postpartum undies.

I am a Kurt Vonnegut character, “unstuck in time.” I am an Alice Wong oracle – a ghost from the past and here to testify to a future that is closer than the people of my planet seem to understand. Have I gotten grandiose enough yet? I suppose I’ve been feeling a bit grandiose. Or, at least, urgent. As my body is slipping and sliding through time, I am watching my government carelessly sweep through, cut, and destabilize services across the country that support us in our inevitable vulnerabilities over the span of a lifetime in these bodies of ours – programs that seek to make polling places more accessible, that connect folks who’ve been paralyzed or lost a limb with resources, that support teenagers with disabilities as they make that terrifying transition from high school to adulthood, that help older people prevent falls, that care for coal miners with black lung disease. This is to say nothing of the programs yet to be put on the chopping block.

It’s possible that some of these programs will be revived – maybe find a home somewhere else. Many will not. And much will be lost – many will be harmed – in the chaos.

Maybe it’s the company I keep, but honestly, the older I get, the more ubiquitous, inevitable, and utterly commonplace disability seems to be. There are ten thousand things that make us different, but one thread that holds every single human together is the fact that we will live our entire lives linked to one body, and those bodies will change, age, get sick, and fall apart over time. Each of us will inevitably require increasing levels of support and care across our lives. We will love people who require support and care. Sometimes I feel like I’m pleading with the first-class passengers on the Titanic while they recline in the smoking lounge – Water is rushing into the lower decks! We need more lifeboats! Everyone chuckles – Silly girl, have you seen how pretty and big our boat is? Come sit and have a cigar!

Maybe it’s crip time itself that allows me to slip into some kind of wizened perch – the ancient Rebekah watching from somewhere above or beyond present Rebekah – and she shows me a glimpse of all of us – I mean every single one of us in our baby bodies, our disabled bodies, our sick bodies, our old age bodies – all of us pressed right up against the organic material that makes up our vulnerable existence. How often it starts and ends and, yes, even middles with needing someone to wipe our bum. Help us eat. Listen to us marvel and grieve the ways our bodies are changing. Find ways to understand us – to keep listening – even when we lose the ability to form the words. Even when we never had words to begin with.

I don’t mean to imply that any of this is easy or light or simple. Often, it’s the opposite. Existing in crip time – witnessing someone you love in crip time – can be terrifying. It can be grief, can be fury, can be bewilderment. Caring and being cared for – especially in this world that does not prioritize care work – can be heavy – can take a deep, profound toll. Crip time doesn’t always take us to places we want to be.

But this is what I wish we all understood: when we mock and shame and abandon the ones we perceive to be on the “outside” – the old, the sick, the disabled, the ones who don’t match the narrow timeline we’ve doled out for the human body/mind – we mock, shame, and abandon ourselves. I see the thread looping – laughing at the old ladies chatting about their arthritis, mocking the package of Depends lives in the same story as flippant cuts to programs that buoy us when our bodies need help.

And yet – we are all little mushrooms, here for one bright and stormy morning, bursting awake and quickly fading as we try to learn and quickly forget how to wield these material forms to which we are tethered. Having a body is messy, nonlinear, and inherently, unavoidably vulnerable. Not one of us is exempt from the rules of this game.

A line of Rebekah's sons clay creatures stand in a line on the teal blue chair Rebekah sat on as a child in her grandma's house. Each creature has it's own weird shape and expression. Some have of lots of eyes or googly eyes or two eyes of different sizes. Others have horns, some are frowning, others smiling, one seems to be sitting on a wheelchair.

I will continue to insist – for you and for me, for my mom and my grandma, for my niece and my sister, for my son and my partner – there is no shame in having a body, no shame in needing care, no shame feeling our own vulnerabilities. When we need help and when we are helping, there is dignity here.

So hold your head high, baby. Put on your favorite earrings, swish your ruffled dress. I’ll throw our wet and dirty laundry in the wash again and again. I will look you in the eye. I will listen. We will not belittle the absolutely absurd, crushingly mundane wonder that is life in these bodies of ours.

One long pink swipe made by Rebekah’s son with paint.

CHEWY QUESTIONS – If you want to continue to think through the ideas here, these questions are for you – please feel free to explore this in your personal writing, to talk about it with your people, or to join the conversation on Substack.

• How would you describe your body’s relationship with time? Do you ever feel out of sync with the clock or the calendar? What does that tension look/sound/feel like?

• Do you remember a time when you learned to be ashamed of your body? If you could talk to that version of you today, what would you say?

Two horizontal marks crossing each other made by Rebekah and her son with green and orange marker.

New Books! — Spring 2025

We Are the Scrappy Ones is now available to order wherever books are sold, HOWEVER, if you want a signed copy of the book AND want to support the coziest local bookshop, you can order through one of our all-time favorite spots, Monstera’s Books.

Owning It: Tales From Our Disabled Childhoods made its way into the world last week! I’m thrilled to have an essay included in this forthcoming YA collection of first-person essays, edited by Jen Campbell, Lucy and James Catchpole, and illustrated by Sophie Kamlish. (All orders from Blackwell’s – linked above – include free shipping to the US!)

Upcoming Events — Spring 2025

KC Shelf Life Storytelling Event — May 1

Barstow Community College — May 9

Thank you, as always, for being here.

The letters “XOXO” assembled through marks Rebekah and her son made together. The first X is made of green and orange marker swipes. The second X is made of pink and red marker swipes. The first O is drawn from a dark blue colored pencil and almost looks like a full moon. The second O is a big yellow splotch of paint that almost looks like a blazing sun.

Rebekah