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Made Perfect
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Mary’s Song
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The Art of Disability Parenting
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When Merit Drives Out Grace
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Hide and Seek with Providence
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Unfinished Revolution
Falling Down
When you’re challenged by your body, you must love as fiercely as you fight.
By Molly McCully Brown
January 28, 2022
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Lost somewhere in my parents’ house in Virginia, there is an old home video of me at four or five years old. I’m at a table in some occupational therapist’s office, practicing drawing a circle. I hold the marker in my whole fist and move it like it’s made of lead. Gently, my therapist reaches over and tries to put her hand around mine and guide it. Without a word, I shake her off. Then I reach into the basket of markers and take a new one. I look at her, give her the second pen, and move her hands forcefully toward her side of the table, shaking my head. Then I turn back to my own page, my green not-a-circle; I pick up my marker and bear down hard, concentrating. Here the camera starts to shake a little, and somewhere offscreen you can hear my father laughing.
I’ve been thinking a lot, lately, about the mechanisms by which we become who we are.
For instance, I was born three months early. My brain is damaged; my muscles are spastic; it has always been this way. For instance, in college I decided that I wanted to be the kind of person who drank her coffee black. So I did, cups of the stuff. I choked it down, hating it. Until one day I didn’t hate it anymore. This morning I drank my coffee strong and straight in the semidark. It wasn’t a performance. For instance, my younger brother has a little extra piece of a chromosome. It doesn’t have any obvious effect. It’s just a fact in him that might mean something later. And, although I talk to my father several times a week, he always answers the phone, Are you okay?, afraid each time my siblings and I call that we’re in trouble, that we’ve been hurt.
I always set my glass down too close to the edge of the table. I have a head for poems but not for equations, or directions, or dates. My earliest whole memory is of lying in a hospital, choosing which flavor anesthetic gas I wanted to breathe while the surgeons put me under: cherry, butterscotch, grape. Or maybe it’s my father reading “Those Winter Sundays”; I don’t know which comes first. I still can’t eat butterscotch; something in it makes me afraid.
I was born three months early. My brain is damaged; my muscles are spastic; it has always been this way.
I am an identical twin. Or was. (What’s the right tense for having the same genetic material as a ghost?) My mother regularly dreams that she has forgotten one of her children somewhere in the woods. Also, she dislikes cilantro and has beautiful, illegible handwriting and no idea how the internet operates. My older sister can pick up any instrument and discern the way it works in minutes, pick out basic chord progressions like she already speaks the language. She runs marathons, pushing her body like a hot, humming engine turning over and over and over. Our little brother adores her. He can name every baseball prospect eligible for the draft this year, and when he’s upset, his face sets hard just like our father’s, and he doesn’t want to talk to you. My father can remember no poems but all the lyrics to “Born to Run.” He doesn’t go to church but keeps a medal of Saint Lucy hanging in his car to stand guard over his failing eyes.
Which of these things begets another? By what logic do they come into the world? How much shaping of ourselves can we do before we throw up our hands and are carried away by the sea?
For someone who is so clearly physically fragile, who so frequently can’t get along without the help of other people, I am especially bad at being vulnerable. What I mean is, I will roll through the airport in my wheelchair with the strap of my bag in my teeth rather than let someone push me. No, what I mean is, I have a thousand-watt I’ve got it! smile. No, I’m skirting the whole truth again – what I mean is that almost every person I have ever loved has at some point looked me in the eye and said: You have to let me in; you have to tell me what you’re feeling; you have to ask for help. Far too often I have let things go to rubble rather than open up.
Until the year I turn twenty-one, I somehow manage to think my anger is a secret, a small stone only I can feel settled heavy in my throat.
That year, I’m living in Texas and teaching creative writing at an inner-city elementary school several afternoons a week. My kids are in fourth grade, but they do not know the difference between a noun, a verb, and an adjective. Many of them cannot put a sentence together. Most of them don’t speak English as a first language. They associate writing with feeling dumb, and from the first day, it’s clear to me that they’re furious about the hours that we spend together each week. They think they’ve been dumped with me because they’re struggling or because their parents, working long hours, are not free to pick them up when the school day ends. They’re not wrong.
I learned early to love that I was fierce. To understand that my willingness to go to battle was a star under which I would thrive.
They refuse to pick up their pencils. They throw paper airplanes at my head. They steal each other’s shoes and leap out of their seats at every available opportunity. They call me bitch with a casual venom that stuns me. They slap each other outright. They cry at the slightest provocation, and otherwise they yell. They are all bluster and devastation. Tiny storms. Microbursts.
There are nineteen of them. I’m a year out of college and completely lost, enraged to discover that I muscled through a childhood and adolescence marked by surgical intervention and constant physical therapy in pursuit of some bright and “better” future, only to find myself staring down the barrel of an adulthood that looks just as lonely, complicated, and medically uncertain. My knees and elbows and ankles throb. I resist the urge to yell Fuck you! I’m angry, too!
But, amid the chaos, the kids are also hugely imaginative and gregarious and inventive. They stand up on chairs and share all the details of what they ate for lunch or why they hate vanilla pudding. They tell me the dreams they have about space-travel robots and their ideas for the best possible superhero, who would shoot chocolate from his mouth. They want me to call them by the names of ’90s pop stars I have no idea how they’ve ever heard of. For a week, Salvador only answers to J-Lo. Kimani ends every writing prompt we ever do with a list of all the impossibly fancy cars he wants to own: Bugatti, Lamborghini, Ferrari, Corvette.
One day, when I stand up briefly at the board to write an example sentence, I trip and fall down. They all rush toward me in a collective wave. Warm little bodies, tiny hands patting my back. I fall down sometimes, too, Jerry says matter-of-factly. Like, Don’t worry, you’re not the only one. They nod soberly.
They deserve someone so much better than me. Someone able-bodied. Experienced. Not so busy falling apart. But I’m all they’ve got for these small hours. I resist the urge to cry, to say I’m sorry. I’m sorry. I’m so sorry.
One day, Trevor, when I tell him he has to open his notebook and get to work, looks me straight in the face and begins to stab himself in the chest with his pencil. Hard. I hear the lead break below his clavicle. He blinks tears out of his huge, brass eyes. I have never before felt quite so limited by my wheelchair. I cannot fit between the desks to reach him. I stagger up and trip in the distance between us. Inside me, something seethes. Inside me, some feral animal claws at my rib cage, trapped.
That night I go out to dinner with a friend. Talking about some article I read on the internet about how we process grief, I say: I mean, if I had to pick a negative emotion to feel – fear, anger, sadness – I’d pick –
Anger. You’d pick anger.
She cuts me off like she’s saying: I know. Of course you would. Of course. She means it fondly, but there it is. I’m shocked. I ask if she thinks I am an angry person. She looks at me like I’m a lunatic.
Molly, of course. You’re one of the angriest people I know.
She’s kind enough to list all the other, better things she thinks I am as well. But down there with it all, she says, there’s rage.
I am not keeping my own secrets especially well.
I learned early to love that I was fierce. To understand that my willingness to go to battle was a star under which I would thrive. You need a lot of grit, a little rage to wrestle pain. The story goes that I came into the world blue and tiny and sparring for my place in it. Two pounds, with my fists up. Watch out, the nurses said. Watch out, you’ve got a fighter.
What comes first: the fierceness or the need to be fierce?
Fighting, I re-learned to walk four times; I clenched my teeth through spasms. I eased dissolving stitches out of the backs of my legs. I bled inside plaster casts and muscled my body into strange cities. And I learned to spin the terror of falling down in the shower, or alone on a rainy street, into something harder-edged that would let me do much more complicated things alone. I am the woman leaping off the high dive, even when it looks like falling.
I feel an enormous amount of loyalty to the little girl in that lost home video. I see how madly she wants her own independent life, how hard she’s willing to work for it, how important she already knows it is that she can make it for herself. And so I worked hard to turn her into a woman who won’t back down, one who has options available to her and the gumption to go after them. One who knows how to drink whiskey and hold a political debate, wear red lipstick and fight the impulse to hate herself, however flawed and incapable she feels every day. I worked to give her everything I could of the life she wanted, miles farther from home than anybody thought she’d ever go.
Feel fear? Feel sadness? Feel lonely or wounded? If you can turn it into rage, you can use it as fuel. Get mad and you’ll get up in the morning.
But somehow I’ve become a person who speaks sharply to everyone around her. Who wants to scream at children, then break down in tears. Whose rage is always written on her face.
You’re one of the angriest people I know.
Anger is part of the engine that makes things happen, but it’s savage and dangerous. It also burns things down.
I never meant to turn that girl into a forest fire.
Toward the end of the year, I read my class a version of Rudyard Kipling’s story “How The Camel Got His Hump.” I have them make construction paper signs with all the animal names and act it out on the rug in the front of the classroom, saying humph just like the camel does in the story, hanging their heads in frustration like the dog and the ox. They compete to see who can humph louder. They draw pictures of purple polka-dotted camels. I’ve given up on making them stay seated while we’re working. Instead, I say, One foot has to be touching your desk at all times. They stretch their ankles as far from their bodies as possible and stick their tongues out at me. I pop a wheelie in my chair and they holler like we’re at the X Games.
The next time we meet, I coax them into working on the story of how the wizard got her magic. We go sentence by sentence.
How does the wizard get her powers? A magic asteroid!
What is her name? Alice the Wiz!
Who is the enemy? A zombie that wants to get the wizard’s power by eating her brain!
Where is it set? A mansion!
Write one important thing about Alice that you might not know if you looked at her? She just wants to be happy! No, she’s afraid of spiders!
And at the end of class Julie looks up and says, You tricked us into writing a whole story!
Yeah! they chorus and nod their heads. They are thrilled.
Every class they ask if I’m mad at them; they ask for jelly beans. Every class they ask if I’m coming back.
Now, a few years later, it’s early in the morning. I’m twenty-something years old in my apartment in another place I gunned hard for, and I’m trying to put my fists down. I’m weary. I’m the wildest combination of young and old. I don’t want fifty more years running on rage.
The thing about the girl in that old home video? She’s stubborn, and she’s mad as hell, but she’s smart about it. She’s gentle when she shakes the therapist off. She gives the person trying to help her her own marker to use. And what’s written on that girl’s face when she turns back to the work of the circle on her page isn’t rage, but attention.
Some fine thread of devotion has always run through everything I do. It’s tiny and shining and down there somewhere, even overgrown by rage.
The thing about Alice the Wiz? She just wants to be happy.
Love as fiercely as you fight. What an obnoxiously necessary platitude. Some fine thread of devotion has always run through everything I do. It’s tiny and shining and down there somewhere, even overgrown by rage. It’s the only reason I’ve ever made anything.
On my last day in the classroom with my kids in Texas, I ask them to make lists of all the things they love: mama, Church’s Chicken, Bugattis, bunny rabbits, Grand Theft Auto, my sister, being able to whistle, Captain America, the rain when it’s summer. They read them in a crazy loud chorus. I close my eyes and try to hear it.
I don’t want to burn things down. But I’m suspicious of resolutions, so I’ll just say this: This morning I woke up early, when Mississippi was still cold. I made my coffee and drank it black and remembered that I had made that possible for myself. I watched the sun come up and loved the light and concentrated on feeling happy.
Hey, stubborn little blond-haired girl, we won. We are alive. And now the work is to be gentler with ourselves and with the world. I want such a sweet life for you. I want the fierceness of attention, of the light coming over the hill, of your own hand bringing a cup to your mouth. Of love, which will abide so much longer than the fire.
From Places I’ve Taken My Body. Copyright ©️ 2021 by Molly McCully Brown. Reprinted by permission of Persea Books, Inc. (New York), www.perseabooks.com. All rights reserved.
About the artist: Gordon Sasaki, an Asian American artist, has been a wheelchair user since an auto accident that led to his commitment to disability culture and advocacy. Through his artwork, Sasaki says, he seeks to find beauty in adversity.
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Mary Jo White
Wow, it kept me captive and some I could relate to. wonderful!
Karen
Wow! I’m going to search out her books!
Carla Hahn Clardy
Powerful. Every word resonates with me. Thank you.
sherry lohman
Beautiful---thank you for sharing this. "I didn't know I would start the forest on fire." You're amazing!
Mary
This is a beautiful article. What a brave young woman. I wish her all the best.
Scott Tammaro
So powerful, yet beautifully written. The aging process has brought me to a different place for my back and neck injuries of 32 years ago. Atop them are a bunch of other health issues that have altered the quality of my life. I’m finding myself spending lots of time at Dr’s apps, tests and procedures. I’m not able to wear the “ I’ve got it” smile like I used to for so many years and have learned that it’s ok to ask for help. I still have my moments of not liking feeling vulnerable, but after years of being a fierce fighter I’m of a more serene place with it all. Thank you for sharing.