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Breath & Shadow

Fall 2021 - Vol. 18, Issue 4

"On Her Disability"

written by

Jordyn Taylor

A young girl is left weak on her left side after an AVM (Arteriovenous Malformation) is found in her brain. At seven months old, she doesn’t know what’s going on. She can’t know why her arm twitches or why her parents look concerned whenever she clutches her arm to her chest. After the surgery that successfully removed the group of blood vessels from her head, she doesn’t yet know that her hand will be permanently altered and she will walk with a limp, the walking on her toes is just a phase.

At age one, she’s on TV, Good Morning America, but she won’t remember it nor care at the time. She walks around the stage, amazed by a pen, and waddles toward the audience to show them her amazing discovery. Her doctor sits by her parents and continues the interview, explaining the medical procedure that was done first on the girl toddling across the set, a technology that would go on to save thousands of kids. The girl doesn’t yet know that she was the first to get the procedure, and that whatever happened, there was always a possibility of death.

“That’s gross,” says a boy in her elementary school class when she shows him how she can bend her pointer finger on her left hand back so it almost touches the top of her hand. If her nails were slightly longer, it would. She calls this her party trick, her hidden superpower.

“It’s cool,” says another. Her finger stings, but she keeps showing the students, savoring the attention that her deformed hand has provided, watching her finger grow in redness after each session of show-and-tell. Like a magician, she wows the kids with her trick. She doesn’t understand the significance of her disability, she only knows her body looks different from everyone else’s. When a boy in her first-grade class breaks his leg and is confined to a wheelchair, she is the first to offer to push him. Perhaps it’s to be in the front of the line. Perhaps it’s because he looks different, too. When she wears the braces that pinch her skin, she feels similar to him. But one day his cast will come off, and hers will too, but he will be healed, and she will not.

She rips the insoles out of her shoes to add a new one, one that’s supposed to help her walk better. It doesn’t. She wears braces with different designs, each one changing with the new size. Hearts with the blue brace, a horse on the clear, butterflies on the purple. Her personality shines through more as the braces get larger. Though the designs don’t stop the pinching. They only distract from it. She wore the braces for years hoping they’d loosen the tightness of her leg. They didn’t.

She gets casts plastered on her leg in middle school, the first pink with smiley faces, the second without so her friends can sign it. Her friends make up wild stories of how she broke her leg. She tells them the cast is positioned so it stretches her foot upward, that it’s not broken, simply inconvenient, but she laughs at the stories. She laughs when she is nicknamed ‘Little Finn,’ just like Nemo, the extra ‘n’ just as unique as she. She sits out of field day with her cast and a sock that’s ripped at the big toe to cover it, to protect her toes. She hopes that it’s worth it, that the casts are working, that when they come off, she’ll walk just a little better. They don’t. She doesn’t.

For most of fifth and sixth grade, she wears a machine called a Bioness that clings to her knee and sends electric shocks to her foot. She wears a lanyard that beeps throughout class, the machine moving her foot even though her body isn’t telling it to, the lanyard signaling so, always blinking red. She rips the insole out of her shoe again to make room for the pad that senses every time she takes a step, so the machine can shock her, or rather ‘send the signals’ to her foot. She wonders if it works. She thinks it does, but only when she wears it.

She gets nine Botox injections in her hand and foot and the numbing gel does nothing but make her cold. She still feels the pain as the needles pierce her skin over and over and over. She lies on the hospital bed, clutching her parent’s hands as the needles penetrate her skin. She believes, for a few days after, that the Botox works. She turns doorknobs and feels as though her fingers stretch slightly easier, that one may be starting to move on its own, rather than in tandem with the rest. She realizes it only feels like that because, during these few days, she forces herself to use that hand more. Maybe she should do that more often. She forgets, so she doesn’t.

She goes to physical therapy for most of her life, switching physical therapists every few months (or so it seems), some great, some not so much. She plays games that in hindsight, do nothing: throwing stuffed animals into a basketball hoop, riding around the halls on a scooter propelled mostly by her dominant hand, using her pointer finger to launch a plastic frog across the room, though it never goes far. She lies on tables and makes little conversation with the man who stretches her foot for an hour. She searches aimlessly for a penny in a box of rice that she was supposed to feel for with her fingers, but instead she finds them by pushing the rice aside until she sees the hint of bronze poking through the desert of grain. Sometimes she cheats and picks up the penny with her right hand. They tell her if she does her exercises at home, she won’t have to do physical therapy anymore. She says she will. She doesn’t.

She doesn’t get a surgery that will, potentially, loosen her foot. She puts it off until she forgets about it. She wonders if it would’ve worked. She wonders how much it would’ve changed. She wonders if she’d even notice a difference. She thinks about this surgery now, and is both relieved she did not go through with it, but she is still curious. She still wonders about the ‘what ifs’.

She gets MRI’s every few years for follow ups. She used to be put to sleep, the machines too loud and monstrous for her small mind to handle. She can stay awake now, but flinches at the whirring of the tube, the sounds clear despite the headphones she hopes don’t fall from her ears. The scans are clear, but she’s still frightened by headaches, the thought of another blood clot always at the back of her mind. She’s relieved that her parents still come with her to these appointments. She reminds her mother that it’s almost time for another visit, but she ponders if she truly wants to go. She decides she doesn’t.

She trips across campus, the pain in her foot from short walks threatens an increase of tension in her disabled body, threatening something is wrong when nothing is. She knows not to wear heels. With the pain from walking on the side of her foot, she wouldn’t last more than a half-hour in them. She cracks her wrist and massages her fingers when she hasn’t moved in a while, especially when it’s cold, so her joints do not become too stiff. She watches as her fingernails on her left hand turn blue before those on her right during chilled winter months. She pulls her hair into ponytails to wash her face, only to have it fall before she has finished. She types with one hand but fidgets with both as she searches for the right words to use. Sometimes, she watches herself move in the mirror and wonders what it feels like to move both of her hands in unison. Other times, for just a few moments, she forgets about her disability entirely.

She feels tense now. Tight. She feels her foot slapping against the pavement, feels her fingers fumble and wonders if any of it was worth it. She looks back on everything she’s done to make her disability disappear, easier to manage. She knows it was worth it. Her foot feels tight, but her mind’s loose, she has little worries. Because now, she is confident living with it. The machines made her stronger, though her left side is weak. She has learned from her disability. She has gained a voice. She has written many times on her disability, knowing it will always have a happy ending. Did it change her life? It did. Did it break her?

It didn’t.

Jordyn Taylor is a proud, disabled writer from Bangor, Pennsylvania. She is pursuing Creative Writing and Publishing and Editing degrees and a Professional and Civic Writing minor at Susquehanna University. She is a lover of thrillers, poetry slams, her three dogs, and anything out of the ordinary.

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