It's My Life

by Stacie Ramey

  Hand over mouth feigning shock emoji. Is that even allowed?

  Is that even an emoji?

  Yes.

  Yes, it’s allowed. And even if it wasn’t I’d do it for you.

  Awww. Cutie pie emoji.

  That one’s made up.

  Maybe, but they should have one.

  Agree. Oh, and back at you.

  Twenty

  For a smart girl, I continue to be shocked by how things play out in my life. Like how I believed, really believed, that my parents would listen to me since we had the “little talk” about my having more say in my medical decisions.

  But somehow, two weeks after my accident, here we are in Dr. Rodriguez’s office to discuss my rehabilitation. He’s handed us each a brochure for the rehab center he’s hoping to talk us into. “If you go to Brentwood, it would most likely be for a three- or four-week stay. We could wait until the cast comes off, place the baclofen pump, if you agree to that, before you went, and they could help you adjust to it there.”

  Mom looks at me as if it was all so reasonable. “What are you thinking?”

  “I don’t know.”

  Mom pulls up the calendar on her phone. “You get your cast off in three weeks. So you could go to Brentwood and be back in time for next semester.”

  “And what about the end of this semester?”

  “We’ll switch you to Hospital Homebound and you can finish online,” Mom says.

  My stomach sinks. No more English class with Julian.

  Dr. Rodriguez scrolls through the Brentwood page on his iPad. “It says here that they have teachers at Brentwood to help also.”

  “So I miss all of winter break? With Eric?” My voice is shrill and shaky, and I know that’s not helping me make my case. “Why can’t I rehab here?”

  “You could,” Dr. Rodriguez says, “But at Brentwood you’d get daily PT. Here as an outpatient you’d only get two or three times a week at most.”

  “Why?”

  “That’s all insurance will cover,” he says.

  “Well, can’t the trust pay the difference?” I ask. “I mean, isn’t that what the money’s for?”

  “Yes, Jenna, but outpatient rehab isn’t the same as inpatient. They have more tools inpatient. It’s more intensive and also offers more healing treatments.”

  “So what do we think?” Mom says this like a salesperson trying to talk her customer into a big-ticket item that’s really wrong for them—and she knows it.

  “We would like time to think it over.”

  “How much time do we have?” Dad’s faced forward, one hand on the arm of his chair and the other under his chin. He does this when he’s hyperfocused on something. As in when Mom gets mad at him for working all night on a new product for a client. And in this moment, the thing he’s hyperfocused on is me. Getting me better.

  Dr. Rodriguez types onto his keyboard, looking at his computer screen. “Well, at this point, they have three beds open. Tomorrow they may have ten or none. It all depends.”

  “Have you sent people there before?” Dad asks.

  “Yes. A few.” Then to Mom and me. “They all did very well.”

  He’s building his case. I need to build mine. “The thing is, it doesn’t matter to me how many people have gone or how successful they’ve been.” Mom’s eyes practically bug out, but I keep going. “I’m not saying I’m not going to go, I’m only saying I want to think about it. That I want it to be my decision.”

  Dr. Rodriguez holds up his hand just in time to stop Dad’s rebuttal. “Why don’t you think about it for a day or two. Rehab will only work if Jenna buys in.”

  Dad stands up. Paces. This is going to be bad. All of the oxygen leaves the room as we wait for Dad’s verdict. “No.”

  I surprise myself with an icy reply. “No?”

  “We are your parents, Jenna. This is what you need.” Then to Dr. Rodriguez. “What if we book her at rehab in three weeks and she decides not to go?”

  Dr. Rodriguez says, “I don’t want to take a space if she’s not going to use it. In case someone else needs it.”

  Mom holds her hands up. “I think we should talk about this.”

  “I’m sorry. But I think this is nonnegotiable.” Dad tries to soften the look on his face, but his words have done the damage. “It’s for your own good. Make the appointment.”

  So the ride home is really silent. Mom keeps trying to check me in the mirror, but I’m too busy texting Uncle Steve.

  It’s worse than we thought. They made the decision for me!

  I’ll meet you at the house after this.

  Thank you.

  You want me to bring the papers?

  Yes. Unfort.

  It’ll be ok. OMW.

  By the time we get home, Uncle Steve’s car is parked in our driveway on the left side, which is the side Dad needs to pull into the garage. It seems tactical warfare is already at play in the Cohen household.

  “What’s he doing here?” Mom checks her phone and Dad’s to see if they’ve missed a text or call from him.

  “No idea.” Dad parks. “Probably a slow day at work or something.”

  I detach my seat belt and open my door. Uncle Steve is by my side immediately. “Hello, niece-y.” He kisses me on the cheek. The first thing I notice is that he’s clean shaven.

  “No beard?” I ask.

  He winks. “Turns out I may have to go to court.”

  “What’s up, Steve?” Dad walks ahead to unlock the door. “You parked on the wrong side of the driveway.”

  “My bad.”

  Dad looks like he’s not buying it.

  As we get inside, Mom helps us all unload our coats. “You’ll stay for lunch? I think I have enough pasta salad for everyone. Plus there’s leftover pizza.”

  Uncle Steve hangs up his coat, and I see he’s wearing a suit. “I’m here for Jenna.”

  The room gets quiet. Mom and Dad may not know exactly what Uncle Steve is talking about, but I can see them putting it all together. Uncle Steve looking official in his court suit and no beard. Uncle Steve’s words. He puts his hand in his inner pocket and pulls out a document in an envelope.

  “Jenna?” Dad’s voice is as tight as a guitar string.

  Uncle Steve puts his arm around me. “Perhaps I should escort my client.”

  Dad shoots him a look. “That’s great, Steve, let’s encourage this entire deal.”

  “It’s not a deal. It’s actually called a motion.” He helps me to the living room couch and drums his fingers on the outside of the envelope.

  Mom puts her hands up. “We will all be civil. Underneath all of this, we are family.”

  Dad crosses his arms in front of his chest. I’ve seen him this pissed before. About Penn State football. About Eric’s grades in middle school, before he turned himself around. About Rena’s smart mouth. Never about me.

  “So,” Uncle Steve says, “my client, Jennifer Alden Cohen, would like to proclaim her rights to make her own medical decisions by filing for a medical emancipation.”

  “This is crap,” Dad says.

  “No. This is her right.” Uncle Steve looks at me. “She is pursuing this action to assert her rights in deciding her medical care. This is in lieu of filing a living will, which would dictate in exquisite detail all of the possible morbid scenarios—which as her uncle, I would not like to be forced to do.”

  “God forbid!” Mom says.

  “God forbid,” Uncle Steve agrees.

  Dad turns to me, face pleading. “Why wouldn’t you want to try everything to help yourself? Why limit your potential?”

  Uncle Steve looks at me, but the words I need are stuck. Not because of my cerebral palsy, but because I’m trying so hard not to cry. Dad’s hand is fisted. I can’t stop looking at that hand.

 
“We aren’t forcing her to do anything, Steve,” Mom says.

  “She wants to decide for herself about rehab. And any future treatments.”

  “You don’t even have kids.” My dad’s voice is strained. “You don’t know what it’s like.”

  Uncle Steve puts his arm around me. “If you think that I don’t feel like your kids are my kids, you’re mistaken. I love all three of your kids as if they were my own.”

  Mom, predictably, starts crying.

  “We’ve made our needs known. Now the ball is in your court,” Uncle Steve says.

  “You didn’t have to show up here in your court suit with your…” Dad points to Uncle Steve’s pocket. “With your documents.”

  “He’s my lawyer,” I say. “He did what I paid him to do.”

  “Paid?” Now Dad can’t help but smile a tiny bit.

  “Yes. From my account.”

  Mom puts her hand up. “Jenna, are you scheduled for that baclofen class?”

  “No.”

  “What if you do that? What if you sign up for the class and then we’ll revisit this?”

  Uncle Steve looks around the room, gauging the effects of Mom’s offer. “Jenna?”

  I nod, but a tear escapes, and I know if I speak I’ll descend into full-on sobbing. Which pisses me right the hell off. Why can’t emotions be something my system suppresses like it dulls the feeling in my hands by the end of the day? Why am I choking on all of this instead of standing tall?

  “Okay,” Uncle Steve says. “Let’s look to see when they are offered.”

  “There’s one in a week and a half. After school,” Mom adds because she sees me start to balk.

  Uncle Steve clears his throat.

  “If she agrees,” Mom says.

  “Well if it’s all worked out,” Dad says, an edge to his voice.

  Mom puts her hand on Dad’s arm. “It’s fine, David. We want Jenna to have a say. She should. It’s her body.”

  “And we should have a say, also!”

  “We do. But ultimately it’s her decision.” Mom holds up one of the photo albums she made for me. Mom’s a photographer—gets paid serious money to take other people’s pictures. She always said her family was her favorite subject. “I’ve been looking through these.”

  Dad says, “And…?”

  “And Jenna has been through so many procedures. Procedures we decided—”

  “We decided with the counsel of the doctors.” Dad’s got one finger raised like he’s the one in court, testifying.

  “Yes. Of course,” Mom says, continuing. “But I remember there were times I wasn’t sure if we should try something or not. It might ease my mind to know how she feels.”

  “She’s a kid,” Dad says. “She doesn’t know what she wants.”

  “She’s growing up.”

  Dad sighs. “Okay. Fine. We do the class. Together. Then we decide. Together.”

  Mom smiles. Looks at me. I try my best to smile. “I’ll call Dr. Rodriguez and tell him we want to hold off for now.”

  Uncle Steve turns to me. “We okay with that plan, Jenna?”

  I nod. But I’m not unaware that the entire convo between Mom and Dad happened as if I wasn’t in the room. I want to point that out, but can’t bring myself to do it. Uncle Steve slides my atomic bomb into his pocket. “Okay. Now let’s talk about what you’ll be serving for Hanukkah, assuming I’m still invited?”

  Mom says, “I’m thinking honey cake.”

  Uncle Steve makes a face. “You wouldn’t.”

  Mom laughs.

  Steve leans forward, holding his tie down, and clears his throat. “My client requests chocolate torte.”

  “You’ll be lucky if you get any cake whatsoever,” Dad says, but he’s using his teasing voice, so I know that, for now at least, my family is intact.

  * * *

  9:23 P.M.

  Your biggest fear?

  You mean in real life or like a phobia or something?

  Phobia.

  The usual. Spiders. Any bugs, really.

  Understandable.

  You?

  What’s that fear of things living in holes?

  Trypophobia?

  Shiver.

  Yeah. It’s pretty creepy.

  What about in real life?

  That I won’t get into college. That I’ll never figure my life out.

  Everybody thinks that.

  You’re smart, though. So you don’t think it.

  You have no idea. I think it all the time.

  When I was little, it was like I could look ahead in time and know, just know that I’d be ok. I saw myself winning at life. You know?

  Yeah. I do.

  But now, I’m not sure of anything anymore.

  Let’s run away.

  Where should we go?

  I’m very into mountains these days.

  I’m always into mountains. Northeast? West Coast? Midwest?

  Prettiest?

  How could you choose just one?

  Like books for me.

  Let’s go to Colorado.

  For weed?

  To ski.

  I’m not very athletic.

  Then North Carolina. To hike.

  Slow hiking. With no packs.

  We can stay in a cabin and you can read or write or both. We can take small hikes during the day and canoe on the lake.

  Is it summer?

  At this cabin, it always is. If that’s what you want.

  Sometimes I like winter.

  We could stay in by the fire.

  And watch hockey.

  Now that’s a story I would read. Or maybe we could find something else to do?

  Blushing emoji.

  Gnite, Elsa. Sweet dreams.

  Sweet dreams you too. About the cabin in the woods.

  Twenty-One

  Wednesday. It’s exactly two days until the Hockey Homecoming dance. We won the final game in the series which means I’ve got to pay up on my deal with Julian and actually go. I’ve finally made it back to a somewhat normal routine. For the moment I’ve put off any talk of rehab centers, though my baclofen class is happening early next week. I’ve got my aide trailing behind me, and I’m in my wheelchair. Rena has fitted it with a leopard-print backing, because why the heck not? I’m moving forward, and isn’t that the point anyway?

  Back in English, I am all in. In my other classes, I keep up. It’s not like it’s hard, but the problem is, I’m worn down physically and emotionally. At home I stop doing the practice AP tests. It seems weird. And what’s the point, anyway? I’ve got no future as an AP student. Every time I try to do something different, it ends badly.

  At lunch, Ben sits with his classmates, and I sit with them and they make plans. And I don’t. My only plan is to keep texting Julian, not just because it’s Julian, but also because it’s the only way I can escape from my life. The one I was given. The one my parents are in charge of. The one that was changed one day because some asshole doctor just couldn’t focus. Medical malfeasance. The two worst words in the world. I never really minded the CP before I found out about the malfeasance. It was always just how it was. Eric got weird hair that never looks combed. Rena got horribly crooked teeth, including a big fang that jutted out before she spent three and a half years with braces on. And I got CP. The surgeries and therapies were part of my life.

  Until that day.

  I usually don’t text Julian at school, but I can’t resist today.

  C’mon. You going to the dance? We had a deal.

  I check to make sure he’s not looking at me. He isn’t. I write back.

  Yes.

  The boy practically jumps out of his seat. I can see him lean forward like he’s in hockey-determination mode.

 
; Woofreakinhoo!!!

  I want to dance with you. Tell me you’ll dance with me.

  I’m not a good dancer.

  So we’ll dance slow. I like slow ones better, anyway.

  Hold on, cowboy, let’s take this one step at a time…

  You said you’re going. I’m going to live with that all day!

  And I smile.

  That’s a big mistake, though, because that’s the moment Ben’s eyes lock on mine. “Be careful.” He points one of his french fries at me, and his gaze doesn’t waver. “You. Me. Strategy session later.”

  * * *

  After school Ben and I hold court in our game room. Mom brings a tray of snacks.

  Popcorn for Ben. Crackers with thin slices of sharp white cheddar cheese on top. Meanwhile Julian is blowing up my cell. And I’m trying not to look at it.

  “You are playing with fire, girl,” Ben says. “What’s your plan?”

  “Honestly, this is the first time I’ve felt normal in forever. You. Me. Movies. Can’t we just keep it light?”

  More texts.

  Ben points. “The question is, can he?”

  I shift my phone to silent. Then put it against my forehead. “I don’t know. I don’t know. I don’t know.” I hand it to Ben. “Advise me, oh wise one.”

  “Hmmm, let’s see.” He starts scrolling through our messages. “The boy likes to beg.”

  I reach for the phone and he holds it out of my reach while reading the texts out loud. “Oh, Elsa, won’t you tell me who you are? It pains me. It…makes me swoon.”

  “He did not say that.”

  He stands on the couch. Literally stands so I can’t get the phone.

  “That’s cheating! And me in a cast!”

  Ben rubs one finger over his eyebrows, the same ones he claims are perfect even without any work. “I’m embellishing.” His smile is huge and reaches his eyes, which makes me laugh, too. “A little.”

  Mom comes in carrying more snacks. Her eyes point to my cast. “Maybe take it a little easy?”

  Ben slides back into his seat like a gentleman and hands me my phone. “Sorry, Mrs. Cohen.”

  She shines a big smile at him. “I’ll just leave you two to it, but not too late. It’s a school night.”

  “We have a late start tomorrow. Remember? PSAT for the sophomores.”