I want my hair back. I want my scalp in the right place and my eyes both able to open all the way. I want there to be something in my middle instead of nothing, a blank cavity that only negative things swell from. I want there to be an easy answer like when I was a kid: a Band-Aid, some ice cream. I want to cry.
That’s how I’m feeling.
So I just do, because I can now. My mom is here, and somehow that makes me feel safe and terrified at the same time. Safe enough to cry but terrified I won’t be able to stop. Tears slide out from under my swollen eyelid, the pressure of more liquid adding a new vibration to the constant thumping in my head, the barometer of the pressure inside of Sasha Stone rising even higher.
“Honey, honey, honey,” Mom says, pressing as close as she can to me without getting hands and arms and fingers tangled in all my cords. I cry into the crook of her arm, my pulse a hot thing in my face, pressed against the coolness of her skin.
I finally pull back, dried out, lips cracked and tongue still sticking to everything inside my mouth as if it were flypaper. As I do, there’s a new sound, like packing tape being peeled off the roll.
This new sound came from me.
“Whoops,” Mom says as one of my machines begins to beep hysterically. She reaches down the front of my shirt as if it were the most normal thing in the world, and presses a sticky pad back in place, covering an irritated patch of skin where it had been before.
“What?” I look down at my chest, fascinated. I’m dotted with them, pale gray pads with wires that spool down my front to crawl out from under my gown, winding their way around each other back up to the heart monitor.
“And Dad always says I’m disconnected,” I joke, and it’s Mom’s turn to cry. She does it quietly, holding my hand while I take inventory now that I’m fully conscious.
There’s a tube in my nose, an IV in the top of my left hand, and while the heart monitors on my chest aren’t exactly in me, they’re definitely violating my privacy.
“Can I have a mirror?” I ask Mom. She wipes away her last tear using my hospital gown, and shakes her head.
“Not yet.”
“That bad?”
“Yeah it’s . . . it’s pretty bad, Sasha.”
“The nurse said she’d be back in ten minutes to check my reaction to the pain meds,” I tell Mom.
“You had a reaction, all right,” Mom says, smiling a little. “I didn’t think you knew some of those words.”
“Oh . . . was it . . .” I try to remember, but those moments must be kept somewhere else, stored away for Shanna. “Was I bad?”
Mom waves away whatever potty mouth I grew while medicated. “It doesn’t matter, honey. You were out cold by the time the nurse got back. Dad and I were here, and that girl from the county . . .” She fades out, like someone popped a mute in her horn.
“The social worker,” I finish for her. “Amanda.”
“The medics called her in because they thought you . . .” She doesn’t finish, eyes searching my face like maybe I’ll volunteer a word that isn’t suicide, something much closer to the sane, well-adjusted daughter she thought she had.
I don’t say anything.
“We’ll get you a real therapist, honey. Someone older, with more experience.”
I think about Amanda and her ink-stained pants, the little sore in the corner of her mouth where she poked her tongue while she was thinking. Then I think of a lined face, a wood-paneled office with rubber plants and leather-bound books. A place where I’m not in charge and can’t outwit anyone.
“I want Amanda,” I say.
“But, Sasha, she’s barely an adult herself. She’s not qualified to—to—”
“To fix me?” Mom drops her gaze, her thumbnail sliding under mine as if I were still a child needing someone to clean them.
“I thought you believed me about Shanna,” I say, watching as she rolls a bit of dirt out from under the nail, a piece of our yard that I managed to bring with me here to this forever-lit, sterile place. “I don’t need fixing. There’s nothing wrong with me, Mom,” I say, my voice rising.
“Sasha, please,” Mom shushes, glancing toward the door. “If the nurses think I’m upsetting you they won’t let me stay.”
“She’s here, Mom,” I say, pulling my hand away from her and reaching for the heart monitor. “I’ll show you.”
I find the time stamp, figure out the controls and scroll backward to where I was talking with Amanda.
“There,” I say, stabbing a finger at the blip on the screen, a valley out of concert with the rest of the terrain. “Shanna’s right there.”
Mom takes a deep breath, eyes closed. “No, honey,” she says finally, letting the words out with the exhale. “The doctor said it’s called dilated cardiomyopathy.”
nineteen
I. Things I Know
A. dilated cardiomyopathy: a heart muscle disease in which the left ventricle stretches too thin and cannot pump blood properly
1. Symptoms
a. Fatigue (Checkmark)
b. Shortness of breath (Checkmark)
c. Reduced ability to exercise (Band camp is over, so checkmark.)
d. Swelling in your legs, feet, or abdomen (Checkmark)
2. Complications
a. Heart failure (Some would argue that happened already.)
b. Regurgitation: blood flows backward into the heart when the ventricle fails to expel it (so your heart throws up back into itself)
c. Edema: fluid buildup (only after Isaac visits, ha-ha)
d. Arrhythmia: abnormal heart rhythm (So, like the sixth-grade band, but in my chest cavity)
e. Cardiac arrest: your heart suddenly stops beating (So . . . dead)
f. Blood clots: can form inside left ventricle, if they should enter the bloodstream may cause stroke, heart attack, or damage to other organs (Yes, this is what an embolism is. By my count, second mention of sudden death.)
II. Things I Don’t Know
A. What Shanna has to say about all this
Shanna has been silent since the diagnosis. Dad follows her lead, his jaw wired shut as I sit in between him and Mom, one facial muscle trembling as if it doesn’t quite have the strength necessary to do its job—much like my left ventricle. We’ve faced multiple doctors and specialists in this way in the week following my accident.
Mom is his polar opposite. She asks questions, repeats the answers, and has even begun to take notes as the doctors talk about treatments, tests, therapies, transplants. When she asked for my input I told her I’d noticed everything starts with a T. I don’t know what else to say. I am of no use in this situation that exists only because I have failed at something.
I take tests, sit, stand, walk on treadmills, raise my arms. Things are inserted and removed, radiation passes through my body with X-rays, and blood leaves in little tubes. But lots of little tubes add up, and I spend most of my time resting; the fatigue that I had noticed earlier seems to have tripled. Whether because there’s a reason for it now, or because it’s actually worse, I don’t know.
As soon as my chest tube and catheter are out I go to the bathroom on my own, making the trip the second Mom and Dad say good night and close the door behind them. My IV is still in, so I have to take the tree along, little bags of liquid that follow me as I go to empty a different bag of liquid that’s inside.
Nobody looks good under fluorescents, and bathroom tiles are probably the worst background for anyone other than a police lineup, so I avoid looking in the mirror as much as possible. I suppose I look like death. True death, not just the expression.
Judging from the initial reactions of everyone who walks into my hospital room I’m assuming if I’d died it would be a closed casket. I can feel hair growing back in on the side of my head that was shaved. It will be a while before it’s long enough to cover the fault line I can feel running from the middle of my forehead to behind my right ear. I touched the stitches briefly once, fingers exploring in the privacy of my room. The stitches
holding my face together are close and thick, and I imagine the curvature of the wound makes my head look like a baseball.
I hold my hand up like a blinder so I’m not tempted to glance in the mirror as I use the bathroom. I run my finger over the rest of the wounds on my face, counting the stitches as if they might have changed since last time. Six trace my left jawline, three seem to be attaching my earlobe, and I’ve glimpsed at least eight curving from above my collarbone to disappear behind my back. It could go all the way down my spine like a zipper, for all I know. The wound in my side I’ve seen plenty, every time my shirt was lifted so that people could listen to my heart, my lungs, my failure to operate correctly.
It burns when I pee, the catheter leaving behind a trail of swollen tissue. I go back to my bed, careful not to tangle my IV in anything as I slide under the sheets and push buttons until I have the bed the way I want it. The lights are off, and I can just see the outline of myself in the black reflection of the windows. No details. No stitches. Just a girl, with holes where her eyes and mouth are.
“Shanna?” I say quietly, but she remains voiceless without pen and paper, or a phone.
And maybe it’s easier for her that way, not having to own up to the reality of the situation. I may have killed her, but she’ll be responsible for both our deaths when they come, her brag of a stronger heart clearly being in error. We’ll have plenty to talk about once I find a way for us to communicate again.
I look at my heart monitor, the irregularities frighteningly obvious.
I better hurry.
Everything has fallen away.
I ask Mom if she’s been in touch with my teachers about makeup work. She puts down a medical manual about the structure of the heart and pats my hand.
“Don’t worry about that right now.”
I look at Dad, but he’s studying the pain chart my nurse keeps referring to, his own mouth in a flat line that reflects the number four face.
“What about Oberlin?” I push. Mom waves her hand like my further education is a fat housefly with an errant flight pattern that might land in her hair.
I realize that it might be more fitting to be looking at caskets than curriculum, but my goals have faded drastically in a short amount of time. A week ago I was creating a spreadsheet of courses that I could take in order to get my bachelor’s in three years. Now I’m focused on my heart continuing to beat.
Shanna’s heart.
It’s her faulty heart impeding everything, fluttering into helplessness right when I need it most and fast-tracked to flare out long before my mind. All the work I’ve done, every breath my lungs forced into a clarinet, every note my fingers mapped, every piece my brain has memorized is useless without a heart to fuel them. I’m getting angry and Shanna chides me for it, the monitor at my side emitting a bleep.
Mom and Dad both tense, eyes going from me to the monitor, unable to read either one.
“I’m fine,” I tell them. “Shanna just doesn’t like my train of thought.”
They exchange a glance.
“What?” I demand.
“Honey—” Mom begins, but I cut her off with a raised hand. She’s a nice person, which means she’s really terrible at delivering bad news, all the candy-coating making you not notice the rotten center of the words coming out of her mouth. Dad has his uses, the deep practicality I inherited making even bitter truth a quick process.
“So what is it?” I ask him.
“The doctors are concerned that your heart condition is urgent enough for you to need a transplant,” he says.
My hands go up to my chest in reflex, fingers curling into small fists. “But that would mean Shanna—”
“Shhhhh,” Mom hisses at me, and gets up to close the door to my room. “Don’t.”
“Sasha,” Dad says carefully, using the same tone I’ve heard over the phone with people who made rather large income tax return errors. “You probably won’t last long without a heart transplant, and there are certain conditions you have to fulfill in order to be eligible for a donor organ.”
“You have to be healthy—other than your heart, of course,” Mom pipes up.
“Check,” I say, hands still covering my chest where I can feel my sister beating erratically, her tempo lost.
“You can’t abuse alcohol or drugs,” Dad says, avoiding my eyes.
“I don’t,” I say. “What? I don’t!” I insist when I see Mom frowning at the floor like maybe it had suggested otherwise.
“The last thing . . . honey,” she says. “You have to be mentally sound.”
“Check,” I repeat, daring them to contradict me.
They share another look before Dad clears his throat.
“There’s some concern about how you came to fall out the window,” he says. “But your mother and I talked, and we think we’ve managed to convince the doctors that it was an accident.”
“Okay,” I say, deciding not to tell him I already informed Amanda otherwise.
“It also means you can’t talk about what you think is going on with your heart,” Mom says. “To anyone.”
“I said something to the medics,” I admit.
Dad shrugs. “You were in shock.”
Mom nods in complete agreement. “If they suspect you’re not mentally competent, you won’t get a transplant and—”
“And I die,” I finish for her. “And if I do get a transplant, Shanna dies.” As do nights sitting on trestle bridges, and moonlit meetings with Isaac. Will I even have the memories of what we did together, if Shanna goes?
Mom sighs, looks to Dad for help.
“See that, right there?” He points at me, as if there’s an incriminating word bubble hanging over my head. “You can’t do that.”
“I’ve been doing some reading. . . .” Mom rustles in a bag at her side, pulling out some pages covered in her handwriting. I notice it’s a different bag than the one she put the heart structure brochure in, which makes me wonder if this is going to be like my childhood: music lesson bag, pool bag, a briefly used karate bag. Except now one has copies of my X-rays and the other a well-thumbed Diagnostic Stastistical Manual.
“Delusional disorder,” she begins, touching the tips of her fingers to the paper to following along, “is one of the less common psychotic dis—”
“Psychotic?” I yell just as a nurse sticks her head in my room.
“How are we feeling today?” she asks.
I’ve always hated using plural pronouns to reference a single person. It feels especially irritating right now since it might actually be accurate, even if I can’t convince anyone else of that fact.
“Psychotic,” I answer, repeating myself.
The nurse smiles as if I’d said just fine and pulls my covers back. “Let’s see about that echocardiogram,” she says, as if we were all curious about it in the first place.
Dad clears his throat and leaves the room. Every time I have to get out of bed there’s a juggling of priorities where I have to decide whether to use my hands to keep my gown from flapping open in the back or stop all my cords from getting tangled in the bedrails. When Mom and Dad traverse the halls with me to different areas of the hospital for testing, I look like a jellyfish that has caught medical equipment and two confused adults in her tentacles.
Dad displays his solidarity by making the trip with us down to the lab, but exits again when the front of my gown is unceremoniously untied by a guy who is less interested in my body than even Heath ever was. His clinical eye and glancing touch is so much like my boyfriend’s that I feel a prickle in my eyes, unshed tears gathering.
I don’t even know if I can still call Heath my boyfriend, since I’ve had zero contact with the outside world. My phone is presumably in pieces on my bedroom floor, shiny reflective plastic waiting to stab into the soft sole of my foot when I get home.
The sonographer tells me the gel will feel cold, then squirts it right onto my boob. It makes an indecent noise and I stifle a giggle as he puts the probe next to
my skin. Shanna shows up on the screen, a thumping mass of black, white, and gray. Mom leans in, studying the image as if her glancing experience with cardiac medicine has enabled her to understand what she’s looking at.
“Mom, can I get a new phone?” I ask.
She looks up, surprised. I must look pathetic as hell right now, hospital gown gaped open, a stranger putting things on places nothing unnatural should be. It’s a good time to ask.
“Is that smart?”
I drop my eyes. We haven’t talked about the why of my launching myself through the window. It’s taken a backseat to figuring out how we’re going to keep me alive long enough to explain it.
“I’ll talk to your father. And maybe that social worker.”
“Amanda.”
I nod as if grateful, but she just put two human hurdles in between me and phone ownership. “What about my laptop?”
Mom’s already shaking her head, but I keep talking. “I’ve got a lot of ebooks on it, Mom. I need something to read other than two-year-old issues of Seventeen.”
She bites her lip, fading against my argument because what kind of mother denies her terminally ill daughter reading material?
“You can take the internet applications off it,” I keep going. “I won’t even be able to use email.”
“I’ll think about it,” Mom says, just as the sonographer starts lacing up my gown, our oddly intimate and impersonal encounter at an end.
“Reading material!”
Mom’s chirpy greeting first thing in the morning matches some of the beeps from my bedside, a grating soprano of cheer that borders on panic. I toss aside a copy of People that’s three months out of date.
“Finally,” I say, hands out for my laptop. Instead I get a brochure with a smiling Asian kid on the front and a helpful-looking white doctor in the background. The Children’s Cardiac Center is written across the top, supposedly made endearing by primary colors and crayon print.
“What is this?” I ask as Dad comes in carrying a box of granola bars that I asked for.