I have to write down somewhere how I feel on the days when I don’t move and I don’t stay still. When my legs slide over the bed-edge and I’m walking to the bathroom, putting toothpaste on the brush, tasting mint on my tongue—and still part of me is back in the bed, folding and unfolding the edge of the sheet like a bit of finger-skin almost scraped off.

My left vertebral artery has separated just a bit, dissected they call it, its inside wall shredded like a green twig trying not to bend. So now I live in a world of spinning, some days just a faint humming inside my skull, others a swooping roller coaster through a too-bright, too-loud tunnel of nerves.

On a good day, you wouldn’t know to look at me there was anything wrong. On a good day, all anyone sees is the cherry pop lipstick from Lord and Taylor and the twelve silver ring-splints on my fingers, and the thick long hair that gets curlier as I grow older, that stays brown and refuses to gray.

On a good day, am I sick or am I well?

If I feel strong, if I heft the groceries into the car and chop the carrots for soup and write these words, if I sing to my dog as she follows me through the house grinning and shaking her ears…. How can I be sick, on a good day?

And if I can’t figure it out myself, how can I expect anyone else to understand?

*

On a bad day, I don’t remember what it’s like to be well. The sick world is the solid world, the real one.

Maybe you know this world as well. It’s the world where you struggle to sit up to drink without spilling. Where you spill anyway, cool liquid dribbling down your chin, dampness soaking through your thin pajama top.

It’s the damp faint stickiness of skin, and the faint damp stickiness of sheets, and you between them nothing but breath, in and out, trying to hold on.

*

Today started as a bad day, but in the afternoon, my head felt clearer, so I stepped outside to let the dog chase squirrels while I walked the twelve feet to the vegetable garden.

As always, there was so much needing to be done, wild sorrel and purslane breaking through the mulch, the tomato and pepper plants drooping into heavy tangles. My pajama strap snagged on a branch as I inched between the tallest tomatoes, snapping off a few of their blighty stems.

But as I edged further, I saw the plants were already covered in blight, its leopard-yellow spots swarming the drooped leaves.

Every year I promise myself to keep up with the pruning, and every year I spend more days in bed and fewer in the garden.

Today it seemed more impossible than ever. My hands were already trembling. When I crouched down to reach the lowest stems, I lost my balance and flailed for something to hold. The flimsy tomato cage sank to its knees as I fell heavily sideways.

My pajama legs were stained brown with cocoa mulch and pollen. I smelled the sharp tang of tomato leaves all around me.

And then, hidden behind leaves so I almost missed them, on the lowest stem of the Early Girl plant, I saw three small green tomatoes, the first of the season. Smooth-skinned, hard as stones, the size of my knuckles. The leaves were blighted but the fruit was clean.

*

Are the tomatoes sick or well? The only answer is that they are both. And like them, I have to find a way to live in both worlds. It will never be easy.

I want to curl up like the blighted leaves I’ve pruned away, sink back into the soil, be done with moving.

But somehow I wake up again every morning, still spinning, still unfolding, a green stone packed tight with seeds, holding hard to the dirt-sweet heart of this world.

___

Ellen Samuels is a disability writer and scholar and Associate Professor of Gender & Women’s Studies and English at the University of Wisconsin at Madison. Her books include Fantasies of Identification: Disability, Gender, Race (NYU Press, 2014) and a forthcoming poetry collection Hypermobilities (Operating System, 2021). Her creative writing appears in dozens of journals and anthologies, including Nimrod, Copper Nickel, Mid-American Review, Rogue Agent, Disability Studies Quarterly, Disability Visibility, and Journal of the American Medical Association. She has received two Lambda Literary Awards and a Pushcart Nomination. She is currently working on two nonfiction books, Body of Mine: Essays in Genetic Sequence, and Sick Time: What Chronic Life Tells Us. Find her on twitter @ehlastigirl.

Art by Jill Khoury