It's My Life Read online

  Rena swivels around to face me. “See you at lunch.” She gives me a two-finger salute, and I try to return it. My fingers are slightly squashed together, because it’s morning, and my hands need a little time to wake up, but I make a decent attempt. Rena doesn’t acknowledge how sloppy I am, just blows me a kiss and picks up speed as she joins the ranks of the able-bodied.

  Mom unloads me onto the sidewalk next to the handicapped space in the parking lot. “You call if you want to come home, okay?” she pats her pocket. “I’ve got my cell on, and I’m just a few minutes away.”

  “Thanks, Mom.”

  She looks at me one more time, her breath fogging out in front of her. October in Connecticut can serve up some cold days, for sure, but this one feels particularly cool.

  “It’s going to snow,” Mrs. Wilson says, stepping forward, her arms wrapped around her chest. “Mark my word. Hi, Jenna.” Her voice is loud and grating on my already frayed nerves, but I smile and throw her a small wave.

  Mom gives Mrs. Wilson a list of things to look for if I push too hard today. “Seizure, migraine…” she drones on while the wind blows, and I shrug into my coat. “Try to get her to eat something. She hasn’t been able to keep anything down.”

  “I’ve got it,” Mrs. Wilson says. “Let’s get her out of the cold.”

  For once, I agree with her.

  Four

  I drive my wheelchair down the halls of Harrington High, and Mrs. Wilson trails behind me. The sound of her boots on the cold floors propels me forward.

  I’m closing in on the guidance office. Ben usually meets me in this hallway, but he’s nowhere in sight. I pull my phone out and check for messages. Sure enough.

  Running late. Marketing Academy stuff.

  Ben is big with the Marketing Academy. Marketing kids are like student government kids on a lot of energy drinks. Marketing kids don’t plan dances. They plan marketing strategy and compete in state and national competitions. They aren’t just preparing to win; they are preparing to rule the world. To find jobs in finance or any of the management careers. But in high school, the end goal is simple: the nationals in California. Ben says it’s THE BIGS—his ticket to big business, world domination, and season’s passes to Disney. Ben’s a weird combo of things—some Machiavellian, some pretty mainstream.

  I’m so busy musing about my bestie that I almost miss spotting him: Julian Van Beck. My Julian. It’s been years since I’ve seen him, seven to be exact, but I’d know him anywhere. Wavy red hair that used to be cute, but is now downright sexy in a Prince Harry way. He’s gotten tall, and even with his hoodie and baseball jacket, I can make out broad shoulders and what I have to assume is a pretty ripped body.

  Part of me doesn’t want to run into him. Most of me doesn’t. I mean, here he is looking all grown up, and here I am, looking weak and worn out.

  He leans against the wall in front of the guidance office, hands hanging loosely at his side. One foot is pressed against the wall, completely flat, and he gazes toward the ceiling. The look he always wore when he was avoiding something. Or someone. He’s got earbuds in and a piece of paper hanging out of his mouth, half chewed. He used to do that, chew paper, when he was nervous. I’ve got this sudden need to see if he’s okay, but I don’t get a chance. One of the girls in my class, super-flirty Tori Zimmer, saunters up to him. Tori is kind of an expert saunterer. I wait to see how he responds, my breath stuck inside me. Who could resist her siren call? But Julian barely manages a polite smile. Tori walks off, and I want to celebrate in my head. Even if he’s not mine, he’s not hers, either.

  And then it hits me. Maybe he won’t recognize me. He probably doesn’t even remember me. Ben’s got this story of this guy he was friends with all through elementary school, in Washington, DC, where he grew up before he moved here. They were always together. Always. And then when he went back last summer, the dude acted like they’d never met. And when Ben forced the issue (because that’s the way he is), he acted like Ben was nuts. He ran his hand through his hair, look around at his new crew of friends, and said, “You’ve lost it, man. I don’t know you.” Like the guy was embarrassed to be around Ben. Like he couldn’t get away from him fast enough. Which pissed me off so much, I’d told myself I’d gladly give up my chance to be one of the thirty-six saints in order to open a can of whoop ass all over that idiot.

  But now I’m wondering, is this going to be one of those situations?

  I reverse my chair and aim toward my locker, hoping that Julian doesn’t see me.

  “I’ve already got your things,” Mrs. Wilson says.

  This is exactly why I can’t stand her. Just when I’m trying to stay on the down low, she’s throwing a big spotlight on me. Besides, she’s simply here for standby assist, not to treat me like a kid.

  “Jenna, wait,” she says, persisting, and I wish I could run her over with my wheelchair. I would actually do it, make it look like an accident, if it wouldn’t draw even more attention to me. How could she possibly know what I need from my locker? Has she been in my locker? She holds up the books for my first three classes. “See? We’re all set.”

  I glare at her.

  “The administration let me into your locker so I could get your books. We want you all set to catch up, right?”

  Is she kidding? I can’t turn away from her fast enough. Meanwhile my fingers feel sort of uncoordinated, which makes my lock that much harder to work. Mrs. Wilson takes my fumbling as a signal to hover over me. I hold up my hand. “I’ve got this.”

  Out of the corner of my eye, I can see Julian. Farther away now. Far enough away, I hope. I realize I came to school so I could see him, but now I just wish I could disappear. What was I thinking?

  Kids pass by me. Lockers open and shut, Mrs. Wilson’s annoying presence hangs heavy over me. Then there’s a break in the clouds—Ben. I see his brown dress shoes, the ones he wears when he’s presenting a big campaign in class. And they are moving toward me. Thank God.

  “Hey, girl.” He aims his books in the general direction of Julian’s departure. Then back at me. “Who’s that new kid?”

  Ben is the only one who knows how I feel about Julian. How I’ve always felt. But when I told him, I admit, it felt safe, because Julian had moved away and was never coming back. My face gets hot. “Julian.”

  He cranes his neck toward the boy and then turns back to me, an approving look on his face. “Your Julian?” He says it quietly, but in my mind his voice is amplified so loud that everyone can hear.

  “Could you not…”

  He leans against the locker next to mine and says in a much quieter tone, “That’s kind of cool, no?”

  “Sure,” I manage. “I guess.”

  “Tough crowd,” he says.

  Mrs. Wilson jumps in. “Come on, she’s got to get going,”

  The bell starts ringing.

  Ben points at me. “Debrief later.” Then he’s off like a shot toward the 200 building, where the AP classes are held, like the rest of the go-getters. Where I should be going.

  All of the sights and sounds in this hallway, coupled with the feelings of seeing Julian, make my head feel like it’s expanding. The throbbing that nested there earlier intensifies, and a darkness fills the corners of my eyes. I hear a song in my head. The words and music seem so familiar, but I can’t seem to place them. The song mixes with the sounds of a flock of birds screeching as they take flight. I can feel the wind blowing, and I know that’s not right. It can’t be. The lights crackle and flash and I brace for rain. Only that’s not right, either.

  I feel myself being lifted, and then I know a seizure is coming. I know. But I can’t do anything to get out of its way.

  * * *

  I’m in the nurse’s office waiting for Mom to come get me, and my head is pounding.

  My body is transmitting so many sensations that I can’t wrap my head around a
single one of them, except for the dizzying nausea settled deep inside me.

  The lights are low, and there’s music playing in the background. I think I hear Twenty One Pilots. Normally I would say something about how much I love this song, but right this second I am full of disdain for so many things, including all of the things I love. Embarrassed tears coat my cheeks, and it’s all I can do not to shake with how much I hate myself.

  Did he see me? Did I pee myself? I can’t even tell. How screwed up is that? My body is slick with sweat, so I won’t actually know how bad this is until I get home and get changed.

  The door opens. “Oh, Jenna,” Mom says, her voice soft and shaky, like I feel. And it makes me wonder if you can ever completely remove yourself from the person who created you, and the body you were created in. Maybe when you’re typical, you can adequately detach from your mother and carve out your own place in the world, but when you’re the girl with cerebral palsy who has so many regressions, maybe there’s a tiny ethereal tether that keeps you tied together. I don’t know, but I feel like there is. When I was little, that tie felt special. Now it feels confining and childish. I don’t have to tell you no teen really wants to be that.

  Mom is quiet as she loads me into the van, but I can feel her heart cracked wide open, and I know she understands the entirety of my humiliation. We ride home encased in silence. I feel like a failure. I failed to make it through a day at school. Just like Mom said I would. I should have listened. I know Mom’s mind is working overtime as well, as she maneuvers the van through the drizzly day, so we both sort of jump when Dad calls.

  “How is she?” The Bluetooth in the car broadcasts his voice, etched with concern.

  Mom steals a glance in the rearview. “I’ve got her. We’re going home.”

  “Pick up.”

  I can see Mom’s neck and shoulders tense as she holds the phone to her ear, the phone call private now. I know that he’s telling her he wants me to get more tests done at Summit Children’s Hospital. That’s Dad’s answer to everything. As if my body and brain is a stubborn motherboard on one of those supersmart computers he writes code for. Tests mean the hospital. More IVs filled with that horrible liquid slicing through my veins so that the contrast can light up my insides like the branches on my twisted tree. Just thinking about the pain from the dye and the discomfort from the procedures reminds me that my body does not like medical procedures. It rebels and rejects any attempt to see inside it. That’s a lesson Mom and Dad haven’t quite understood, but I live it.

  I tap my head against the car window, a tiny bump that does nothing to soothe my building angst. Mom tries to tell Dad this is not a good time to talk. Dad and I share the same fiery outrage and stubbornness when things are unfair. Mom’s always saying I’m his daughter.

  My phone beeps. It’s Rena.

  You OK?

  News travels fast. I palm my enormous phone and aim my fingers. Sometimes they’re pliable and responsive to my commands, but at present, they’re stiff and fixed in place, so I have to bat at the letters.

  M OK

  Nobody saw anything. I asked.

  I lean my head against the window and let the tears stream down my face.

  I swear. They cleared the hall right away.

  Rena knows the dark thoughts that plague me after one of my episodes, even if she doesn’t know about my lingering crush on that boy. Julian had always been part of our all-kid band. But he moved away before my crush could become real enough to share with Rena. Which means I can’t ask the most important question: Did he see me? Does he know? Of course he does, everyone does by now. Everyone at school is talking about poor Jenna. Even though they mean no harm, the fact that I’m the topic of conversation makes all of this worse.

  It was just because of the dye, right? It’s all going to be ok. You are going to be ok.

  More and more she feeds me the lines I want to hear, but even though I believe in magic, I’m not stupid. I am going to have to deal with stuff like this my entire life. I close my eyes and let my mind drift to my own fantasy. Not about getting better, but about being someone else. I pretend I am with him, Julian. We bump into each other in the hall. I’m the new girl in town, Jennifer. The full name, because in my fantasy, my tongue isn’t bunched and torqued. It’s long and loose and able to leisurely slip over the r sounds—slow and seductive, sweet and sure. No reason to cut it short to Jenna. I am Jennifer. I am here. I am her. I’ve got long, straight, shiny brown hair that I curl sometimes. Today I have it totally straight, and when we run into each other I almost drop my books, but Julian catches them. I’m annoyed at first. But Julian says, “Sorry. I should look where I’m going.”

  I straighten the papers that fell on the floor.

  “Will you let me make it up to you? Buy you coffee?”

  I’d turn away from him, just slightly. “I’m late.”

  “For what?” he says.

  But I’m gone now, walking down the hallway onto my SGA meeting. I’m not the president or an officer or anything, but that’s cool because, in my fantasy, I’ve got way too many other things on my plate to commit to just one club.

  “We’re home,” Mom announces, shaking me from my daydream. “Let’s get you cleaned up and then you can spend the day Netflix bingeing if you like.”

  I tell myself I was smart to dumb down my classes. If I was in the AP or honors classes, I’d have to spend this time catching up on all the classroom stuff I missed. Gen Ed English is ridiculously easy for a girl like me. I tell myself that I’m happy with my choice, even though I know I’ve already read all of the novels we’re doing this year. Not having to sit through kids struggling with the end of Of Mice and Men today should feel like a gift, but it doesn’t. It’s not about the books. It’s not about the teachers. It’s about me being separated from Ben and everyone else. Almost myself. So close, but not quite there.

  In bed, under the covers, my Netflix account loaded, I think about that appointment that’s looming where we’ll go over the results of the tests we just ran. And who knows what kind of plan they will come up with. It’s always the theys that come up with the plans. Mom. Dad. The doctors. Not me. And that’s got to change. I pull up my email. Uncle Steve was there at the beginning. He needs to be here now. For me this time.

  I hit the compose button and type:

  Uncle Steve,

  We need to talk.

  Jenna

  I hit send, my fingers hesitating only for a second. He knew this was coming. I’d told him during Rosh Hashanah, when we were alone in the living room and Rena was fighting with Mom and Dad about not wanting to miss another day of school, that I wanted his help with a little lawyering. That’s exactly what I called it.

  “Whatcha need, niece-y?” he had asked.

  “I’ve been doing some research.”

  He’d taken a bite of Mom’s famous chocolate torte. “And?”

  “Two words: medical emancipation.”

  He choked a little on his torte, which would have been comical if all wasn’t so critical. He stared at the door. When we couldn’t hear anyone talking anymore, he said, “That’s a really big step. Are you sure?”

  “Maybe,” I’d said.

  “Well, tell me when you’re sure and we’ll talk.”

  Just then Dad popped in the room. “Talk about what?”

  Uncle Steve made some sort of cover story. I was too busy staring straight ahead and not wanting to be seen.

  Now, I chew on my knuckle, a habit I know I’ve got to stop, but I worry about what Uncle Steve will say. Am I more nervous that he’ll say yes or he’ll say no?

  Uncle Steve texts me back right away.

  I’m always here for my favorite niece-y!

  Should I tell Rena you said that?

  No!

  Seriously. I’m ready to talk about the…you know…

 
If you can’t say it…

  I can say it. Medical emancipation. It’s time. You owe me.

  I will help you talk with your parents. I am not promising anything else.

  You have to use your lawyer voice.

  Your dad is not intimidated by that.

  See that he is. I’m serious about this.

  The law is on your side, Jenna. And so am I. But you should listen to what your parents and the doctors say.

  That sounds like an equivocation.

  I am at your service. Unless your mom offers me chocolate torte.

  I’ll see that she only serves honey cake.

  Where’s the gag emoji? Now you’ve made me cry.

  I smile and text back.

  I’m counting on you.

  This is going to be a fun family weekend. Just so it blows over by Hanukkah.

  I wanna MaccaBEE in charge of my life!

  I am not going to Latke you push me around.

  groan

  Let’s not make light of what you’re doing.

  I’m feeling gelt-y over all of this.

  Jew-wish there was another way…but there isn’t.

  And that’s how we end the email thread about the most serious campaign I’ve ever waged against my parents.

  Five

  An unseasonably warm Sunday lands Ben and me on the porch swing, his foot controlling how slow we rock. I’ve got two big pillows propped under me, holding me up. My hand winds around the chain and my legs are in Ben’s lap.

  He’s naming the guys he thinks are cute enough for me to date.

  “Todd Stein.”

  “Not bad. A little SGA for my tastes.”

  “I don’t mind the student government part,” Ben says as he stops the swing and dramatically pauses. “Those shorts, though.”

  I smack my thigh. “I know. Every time the thermometer goes north of sixty degrees, he’s gotta show his knees off.”

  Ben nods. “That boy’s in love with his knees.”