GUS

THE DAY AFTER Kalyn flees my house, I wake up at about 70 percent rigor mortis. I’m on my side even though I’m supposed to sleep on my back. When I roll over and see Dad, I can’t say good morning to him.

As a kid, it didn’t occur to me that there were reasons I couldn’t keep up with everyone, beyond my constrictive muscles. “Gus,” Dr. Petani told me, “you are working four times harder than anyone else to do the exact same things as anyone else.”

I’d never thought of that. I was just annoyed at myself for zonking out whenever a teacher treated us to a movie, mad that I couldn’t stand in lines without leaning against walls.

In first grade, I became fixated on how people walk. How legs bend in tandem when kids jump in PE, how most feet are spaced during jumping jacks. Some people crouch to bend, but others use their legs like counterweights—one planted, one straight back, perpendicular—becoming accidental ballerinas to recapture fallen things.

On some nights, I’d grab my unbraced right knee—you can sleep in AFOs, but it’s painful for me—and try tilting it to “normal.” I’d aim for the green shag rug by my nightstand to muffle the sound, climbing carefully out of bed like I was defusing a bomb, and lean my full weight on it.

I felt knives in my knee every time, and lost my balance every other. I cried every five. Eventually I stopped trying.

I’d thought often about my twisted parts, and about the branches in my head. But I’d never thought about sheer energy until Dr. Petani told me to.

If I want a glass of milk, I subconsciously plan the route, like I’m embarking on a hiking expedition. I decide where I’ll put my feet, how I’ll get the carton out of the fridge, how best to take the cap off one-handed.

Phil just takes out his milk and pours it.

Models have to think about every move they make, pivot on cue, and time high-heeled steps to music. It helps to pretend I’m walking a runway, but it’s still exhausting.

When I shared this revelation at Camp Wigwah, some kids looked interested and others scoffed. “Well, duh.”

But that’s the thing—outsiders lump kids with CP under the same umbrella, and that’s another umbrella under the enormous parasol of congenital disorders, which sits under the gargantuan black canopy of disability. We’re sorted into categories, but we can be nothing alike. I don’t even mean how some of us are hemiplegic and others are paraplegic, or how some of us are spastic and others aren’t, or some of us have learning disabilities and others don’t. I mean on a personal level, we’re all different people.

That should be obvious, right?

Camp Wigwah is where I realized my disability is like any other part of a person—eyes or ears or teeth or height—in that it’s variable. I have poor eyesight, and the muscles on my right side are tense threads that make my knees collide. But Karen Yuen’s in a wheelchair, and Ali Sniridan spasms every evening.

I started thinking of CP as part of me, and I stopped resenting it so much. It seems dumb to ask your eye color to change. An AFO isn’t bad when you think of it like a pair of glasses. I love my glasses; they’re one fashion accessory that demands no explanation.

That’s how the space brace came about. Mom and Tamara were trying to make me love myself. But it’s harder when it’s someone else’s decision.

So what decisions did Kalyn make about who I am?

My alarm stopped wailing an hour ago.

Will anyone at Jefferson wonder where I am? Do people miss potted plants? It’s not like I haven’t been absent before, tucked into hospitals. Maybe kids will scratch their heads, as if they can’t decide whether someone’s rearranged the cafeteria tables.

“Gus.” Tamara appears at the foot of my bed. “Hon, you need to get up.”

“I’m not going to school today.”

“It’s not that. You need to get downstairs and watch the news. Now.”

I lift my head. Her face is gray despite the sunlight sliding through my bedroom blinds. “Whatever’s on the news, I probably already missed it.”

“They’re looping it over and over. Your mom’s almost catatonic, Gus.”

And that’s when I know it’s about Dad. It’s about us. And maybe it’s about a girl named Kalyn-Rose, or named something else.

I think about every step to the dresser, every motion through the drawers, every step to the bathroom. I manage to catch my toe on the edge of the doorway. I see myself in the mirror, half-dressed, a nightmare.

In the corner of the glass, a senior photo of Dad stares eternally.

“You should have let me go.” That’s what Mom told him yesterday.

I don’t know what it meant, but I think he’s started frowning.