by Jen Malone
Even more than the gut punch the question itself delivers, it kills me to hear my father’s voice crack. He’s usually such a giant goof—he’s never met a cheesy line or an awful pun he could resist. I’m convinced he is the actual man responsible for the expression “Dad jokes.”
Lately he’s been on a corny “Have you ever wondered?” kick. Have you ever wondered why sheep don’t shrink when it rains? Have you ever wondered who named grapefruits when we already had grapes and they’re a fruit? Have you ever wondered why Tarzan doesn’t have a beard?
But, Have you ever wondered what my daughter’s odds of survival are? Not words I expected to hear leave my father’s mouth. I bite my lip, waiting for the reply, but also desperately not wanting to hear it.
Dr. Wah sighs again. “I understand why you’re asking the question, but I’ll give you the same answer I give everyone. If I wanted to be an oddsmaker, I’d have skipped medical school and bought a horse track. I’m not trying to be glib; it’s just that there are too many unknown variables to take into consideration. I wouldn’t even be able to offer an educated guess, other than to say that I’m always optimistic, and I think you should be too—let’s leave it at that for now, okay?”
A rush of love for my doctor and her finesse courses through me. Her response was exactly what I needed.
My parents nod and Dr. Wah offers a tight smile. “Look, I know it’s frustrating to have your fate in the hands of a computer algorithm. But the list is set up in a way that prevents anyone from ‘gaming’ it—there’s no priority given to the rich or to celebrities and no prejudices based on religion or occupation or political affiliation. The only factors taken into account are biological and geographical. Who needs the recovered organ the most, who’s the best physical match for it, and who can be on an operating table in time to receive the transplant. You can make yourself dizzy trying to guess when the call will come, but please don’t do that. Honestly? Here’s the advice I give all my patients. You ready?”
She’s staring straight at me as she asks, and I nod.
“You’re going to recover from the GI bleed very quickly. In fact, you’ll be released shortly and once your sore throat wears off, you should feel just like your regular self, possibly for some time to come. So you go about your life as normally as possible and you do what you need to do to stay strong, mentally. There’s a lot we don’t understand about the mind-body connection, but I’ve seen enough to believe in the healing power of a positive attitude.”
I grasp at the lifeline she offers. The worst thing I can imagine being is powerless, and her words are lightness and hope. Resume normal life? Stay strong? I can follow that action plan. Coach’s favorite call and response—the one I’m in charge of leading at the end of every jam—plays in my head:
What’s the boss of us?
Courage!
What’s never the boss of us?
Fear!
The perfect mantra for this. The words are metal rods burrowing into my spine, straightening it, shoving up against the spaces where panic had invaded and serving notice. I can hack this waiting game thing.
No. I won’t just hack it . . . I’ll find a way to own it.
My lungs fill with air again.
“Now, beyond the mental game, let’s cover some other considerations to keep you healthy.” Dr. Wah’s words snap me back to the recovery room. “Your mom mentioned you being up to date on all your immunizations, but we’re going to confirm that. Your liver plays an important function in fighting off infections, so if it’s not running at full capacity, neither is your immune system. I’m talking double the hand washing, got it?”
“Got it,” I tell her.
“We’ll buy stock in Purell,” Dad says.
“I also want you to start taking an antacid daily. Tums. Rolaids. Any kind is fine.”
I’m tempted to answer, “I have a serious disease and you’re prescribing Tums?” but instead I simply say, “Okay, that’s easy.”
“Other than that, if you start having the other symptoms I described—itching, fatigue, yellowing—or any pain, I want you to check with me before taking any over-the-counter drugs because your liver is going to have a hard time processing them. In fact, check with me on anything you want. I’m going to be seeing you for bloodwork every couple of weeks, but if you need me between appointments, you call my office. Someone tells you about a homeopathic treatment they’re heard of and you’re curious about it, you call me to discuss whether it’s something we should explore. You have any questions, you call. Sound good?”
What would sound better is going back to yesterday, when none of this was remotely on my radar.
“Sounds good.”
“Okay then,” she says, standing. “I’m going to take care of things on my end to get you placed on the transplant waiting list. We’ll cover all this in more detail in future appointments, but as far as basics go, you’re going to want to keep your phone close to your body and your body in easy driving distance to the hospital. Recovered livers are only viable for eight to twelve hours, so time is always of the essence.”
So much for the march in DC with Sibby at the end of the month. I know that should be minor in light of everything else, but the pinch of disappointment is real.
Dr. Wah puts her hand on my knee. “You’re strong, Amelia. I have a good feeling about your ability to handle this. You have me to lean on anytime you need it. And your parents too, of course.”
She turns to acknowledge them and both share closed-lipped smiles with her, but I notice the tightness in the corners of my dad’s eyes, and my mother seems to be having a hard time swallowing. I have to look away to tamp down the tickle behind my eyelids.
Fear is not the boss of me; courage is.
I will not let this disease ruin my life.
Dr. Wah’s shoes click out of hearing range and a heavy silence descends.
There is both everything to say . . . and nothing to add.
After a few seconds Dad clears his throat and pulls his cell from his pocket, pointing it to the hallway. “I, um—I should fill Alex in while we wait for them to discharge you.”
My older brother is a sophomore at college in Maryland. We’re close, but not super tight or anything, and I wonder how much he’s been looped in already and how he’s reacting.
Mom’s sigh is soft. “Tell him I’ll call him later too.”
Dad slips from the room and my mother reaches under my bed to haul her purse into her lap. “Speaking of calling, I have your phone in here. Sibby’s been texting every five seconds, so you might want to let her know you’re up. When Dad and I got to the ER she was simultaneously manning a phone tree to update your teammates and badgering the woman at the registration desk for information on you. I had to promise her we’d call as soon as you were awake to keep her from staging a mutiny.”
I smile at the image, then flash back on how panicked Sibby was at the arena, having to watch me spray blood everywhere.
Mom jams her hand inside her purse, feeling around. “Do you want some privacy to talk to her?” she asks. “I could find Dad out there and we could grab a coffee from the cafeteria or something.”
My mother’s giant bag is the one place she surrenders to disorder and chaos, and the sight of her rummaging through it in search of some elusive item it’s eaten is such a normal sight, while everything else about this scene is so surreal. I can’t make myself reconcile the two.
“Why can I never find anything in here!” Mom glares death rays at the purse before she dumps it upside down and begins shaking items loose onto the blanket covering me.
“Mom!” I yelp, when crumbs from a half-eaten PowerBar scatter onto the floor.
She huffs but lets the bag fall from her fingers. “Sorry.” She lowers her chin and shakes her head. “I’m sorry,” she repeats, sounding defeated.
“It’s fine. It’s in there somewhere and in the meantime, I can call Sibby from yours—this is nothing worth getting worked up about.�
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She half snorts, half chokes, her eyes still on the floor. We both know her being upset has nothing to with my phone, but neither of us is willing to go there. Despite all my resolve to stay strong following Dr. Wah’s pep talk, I have to fight the urge to turn on my side and draw my knees tight to my chest.
Mom exhales slowly and her expression turns rueful. “Bet you didn’t picture your day ending here when you woke up this morning.”
Truer words have never been spoken.
Not my day, or my year . . . or even my decade, if I’m being honest.
I’ve always known my BA could catch up with me . . . someday. I just never expected someday could be today.
3
THERE ARE FEW THINGS IN LIFE AS ANNOYING AS THE SOUND OF four hundred and seventeen pairs of feet stomping up wooden bleachers. Except for maybe the smell of the four hundred and seventeen teens attached to those feet, crammed into a stifling high school gymnasium that held a varsity wrestling match yesterday afternoon and the town rec program’s Zumba for Expectant Moms before first bell this morning. Nothing could rival the smell of that blood on the derby track two weeks ago, but this is mounting a good case for second place.
“You ready?” Sibby asks, surveying the audience from our spot under the basketball net.
I nod. How could I not be? I said I would find a way to own this situation and I’ve hit upon the perfect solution. Plus, this is hardly our first rodeo. Or our tenth. This scene is both familiar and exhilarating.
There are two places I feel most like me: on the derby track and onstage at a rally. Roller derby is out at the moment, so rally it is.
I glance at my mother, who’s here for “moral support” and is standing on the sidelines nearby, chatting with Miss Leekley, my art teacher. They catch me looking and Mom flashes the subtlest of thumbs-up signs, paired with a tentative smile.
“Who am I?” Sibby asks, drawing my focus back to her.
I grin. “You are the madwoman in their attic.”
“And you are a rebel swamp forest goddess. We yield to no one and nothing. We bend all to our will.”
Some rely on Kanye in their earbuds, some chug Red Bull. Sibby and I pump up for our speeches with our own special brand of affirmations.
Principal Kurjakovic raises her eyebrows at us and, upon Sibby’s answering nod, strides to center court and taps the microphone. “Good morning, seniors! I’m sure many of you are wondering what the purpose of today’s assembly is. For that, I’ll hand things off to Sibilla Watson and Amelia Linehan. Please give them your full attention and respect.”
I’m not sure we’ll get either for long. Graduation is less than three months away, close enough that we can taste it, so attention spans are shot to hell already. And with college acceptances coming in earnest this week, those are basically all anyone can focus on. But for the moment my classmates’ naked curiosity is keeping smuggled phones tucked in pockets and whispers quiet.
Sibby squeezes my pinkie one last time before stepping forward for the mic handoff. Everyone cringes at the scritch-scratch noise the speakers broadcast when she vigorously wipes the head of it with the edge of her T-shirt, which reads EXTRA AF. I doubt much blame is cast, though; our principal has a well-documented issue with spittle.
I force my shoulders back and my spine straight as I catch up to my best friend, accept the now-clean mic from her, and turn to face my classmates.
“Fellow Falcons,” I begin. “We interrupt your morning to bring you an important call to action. A big thank-you to Principal Kurjakovic for allowing us this platform.”
Sibby tips her head toward the mic in my hand and says, “And we know you’ve come to expect this kind of stuff from us, but today’s is bloody important so don’t be a bunch of Tooligans.”
This earns some appreciative giggles, even though the majority of my classmates have no idea what she’s just said. Sibby collects Australian slang words like they’re souvenirs from her annual trips back home and takes glorious pleasure using them in undiscerning ways.
I allow the laughter to fade away, then launch into the next bit of our speech. “We want to talk to you today about organ donation . . . specifically why you should consider registering to be a donor. Your organs alone could save the lives of up to eight patients and help countless more. The numbers speak for themselves and, in fact, polling shows that ninety-five percent of people in this country support organ donation. The problem is that only fifty-two percent have taken the mere minutes required to register.”
Sibby’s hand covers mine on the mic and she raises it toward her. “Why, you ask? Because you American tossers are even bigger bludgers than us Aussies, that’s why.”
My classmates who recognize that she’s now sworn—not once, not twice, but four times—within the first few minutes, and in plain earshot of half the school’s administration, reward her with scattered cheers.
She silences them with a finger to her lips and waits for their full attention before dropping her voice low and sober. “There’s nothing to applaud, friends. There’s a severe shortage in the number of available lifesaving organs. Every ten minutes another person is added to the waiting list for one . . . and every day twenty-two people die while languishing there.”
I purposefully reviewed this speech over and over so I could become immune to those numbers, although a shock wave still passes through me at hearing them reverberate through the gymnasium. I plant my feet and will it away.
Mental toughness, that’s what Dr. Wah prescribed. Which happens to be your specialty, I remind myself.
Sibby is giving me raised eyebrows, waiting for me to speak my line.
I gather my breath and speak from my diaphragm. “Seven thousand patients in America alone could be saved each and every year if we had a more robust donor pool.”
Here we go.
My stomach roils but I stare boldly at my classmates and state, “One of those patients saved could be me.”
A ripple runs through them and I will myself to keep my chin high. Activism 101: There are two core components to every successful campaign—hit your audience with stats to drive home the problem, then give them a personal story to connect them to the cause. Today that story is my own. We’ve reached the “necessary evil” part of this rally and I just have to power through it.
Even so, this is the part I’m most apprehensive about. I’m telling them about my BA this way so I can own the narrative, on my terms, and turn a bad situation into positive action. I’m not doing it in dramatic fashion as a play for anyone’s pity—that’s the very last thing I want—but I’ve worried it could be seen as that.
I need to command their respect, not their sympathy.
I picture all my activist idols from Sojourner Truth to Emma Gonzalez, channel their fierceness, and exhale. “A couple weeks ago I learned that a disease I was born with, but that hasn’t really affected me until now, is slowly turning my liver to cement. If I don’t receive a transplant, eventually the liver I have now will go into organ failure.”
My voice stays steady and strong and I’m proud of that.
Fear is not the boss of you; courage is.
The gym stills abruptly at my words, but I don’t react. I’m reciting memorized lines, injecting calculated emotions, stopping any real ones from penetrating my armor. I don’t dare glance at Sibby or, equally dangerous, my mother. Instead, I clench my jaw and force myself to return my classmates’ attention.
I know what they see when they look at me. They see the same pink streak my hair always has. (Well, the color sometimes changes, but the streak itself doesn’t.) They see the familiar necklace that spells out Rolldemort in loopy gold letters. They see yet another of my shabby chic/retro outfits. Today it’s a white blouse with a Peter Pan collar, topped with a navy cardigan that has embroidered rosebuds marching up the button band, a bright yellow pleated skirt, and pink-and-white-striped socks that reach well above my red boots.
I don’t know all four hundred of t
hem personally, but I’m pretty sure I can guess what every last one of them is thinking: She doesn’t look like she’s dying.
Which is very true.
There are no outward physical signs that anything is the least bit off with me. If central casting put out a call for “Dying Girl,” I would not—repeat NOT—land the role. For one thing, those trope-y kids are always baby-faced and angelic-looking, whereas my eyes, while perfectly fine as far as I’m concerned, aren’t saucer-shaped enough to be described as “doe-like.”
Also, Dying Girl is always “wise beyond her years.” I’m pretty damn smart and happy to own it, and I wouldn’t be sitting on an early admission to Amherst if I wasn’t. But smart and wise are two very different things.
Oh, and I could never convincingly flutter my eyelashes and ask Dr. Only On TV Do Medical Professionals Look Like Me for a chaste yet still utterly age-inappropriate first kiss before I slip away to meet my maker on the gentlest of exhales. Especially since my first kiss ship sailed, well . . . a while ago. Hudson Fordham. Ninth grade. Maisy Tannenbaum’s house. Maisy Tannenbaum’s mother’s peach schnapps. (For Hudson, not me. I was stone cold sober for the whole disastrous slobberfest.)
So pretty much the only X mark I’d get on the Dying Girl checklist of requirements is that . . . I might be dying.
As soon as I have the thought, I push it away. Harshly.
You are not dying. Do not think like that. Ever.
The whole point of this assembly is that I don’t intend to let anyone else think like that either. I might be sharing my story with them now, but I want them to walk away with all the proof they need that I’m the same Amelia as ever: fierce and fabulous.
A cell phone rings deep in a backpack and there’s a curse and a frantic rustle for it. Someone cough-shouts “Dumbass” and a few people giggle.
I embrace the comic relief, smiling myself before saying, “I want everyone to know that I’m getting good medical care and I’ll be fine—I didn’t share any of that to shock you or to have you worry about me, but because I want to put a face on this cause and make the point that you never know just who might need this lifesaving gift you have to offer. So, if you do decide that you’d like to register to become a donor, we’re here to make it really easy for you. Some of you may have already declared yourself one when you got your driver’s license.”
