by Jen Malone
“I really am sorry.” Even a week ago, her words would have fired me up. Right now, though, the most my brain musters is a small internal outcry over the indignity of leaving her to believe that all teenagers are flakes.
I’m not a flake! I’m dying!
The echo of those two words bounces against my brain, stopping my breath.
I’m dying.
I’m dying.
Two months ago, that sentence would have sounded as far-fetched as believing that my mother would start a diet or that a guy I hadn’t seen in years would ring my doorbell out of the blue or that I’d go night swimming in the ocean in April. But all those things happened.
And so might this.
Oh my god, so might this. The knowledge settles in my spine. I could die.
My score is twenty-seven and if it reaches thirty, the need for a transplant becomes urgent. Meaning I could die soon.
Like, actually . . . die.
Dead.
Gone.
Forever.
It’s such a bizarre and abstract thing to try to get my head around and yet I can’t deny it anymore. It could happen.
The room spins and I sit hard on the end of my bed. I exhale, aware that Claire is still on the other end of the phone line, possibly waiting to see if I’ll add any further explanation. Well, maybe I will. If I’ve already gone entirely against character by quitting the mural, I might as well go the distance and concede defeat. What do I have to lose at this point?
“You don’t have to be embarrassed when you talk to them.” My voice is hollow. “Just tell them I’m not wrapped up in any graduation hoopla, and that it’s not a prom dress I’m in the market for—it’s a liver.”
“I’m sorry, I don’t? I’m not following.”
I screw my eyes shut and speak the words, as much for me as for her, letting myself taste them on my still-fuzzy tongue for the first time. “I have a serious liver condition and things aren’t looking great for me at the moment. I need a transplant soon or else . . . I could die.”
Her inhale is sharp. A beat passes before she speaks. “I—oh. Um, wow, I—had no idea. I don’t even know what to say here. You—”
I cut her off. “I didn’t know my circumstances myself until after I’d already accepted the commission. I should have updated you on my diagnosis.”
“Oh, Amelia, my heart is breaking. I’m so sorry. Please don’t give one more second’s thought to the mural. We’ll contact the runner-up and see if he—well, it doesn’t even matter where we go from here, that isn’t anything you need to worry about. I—is there anything I can do to help you?” She’s a totally different person than she was five minutes ago.
My mood is so black I’m tempted to snap, “Not unless you happen to have a type ABO B liver you’re not in need of,” but of course I don’t. It’s not this woman’s fault she happened to be stuck on the phone with me the first time I allowed myself to truly acknowledge what my fate might be.
Instead I thank her for her understanding and stumble over yet another apology, before disconnecting the call. I stare at the phone in my hand for a long time, in disbelief that I did the thing I swore I wouldn’t do: I used my disease as an excuse, for sympathy.
I just surrendered to being Dying Girl.
It’s not just my liver that’s being overtaken by scar tissue; it’s all of me.
25
MY CURTAINS SNAP OPEN AND I SQUINT MY EYES AGAINST THE harsh glare.
“Sweetie, it’s Thursday afternoon,” my mother says, wielding a can of Febreze. “You have to get up at some point.”
I roll to my other side, bringing my iPad with me and readjusting my pillow. “I’m tired.”
“You probably have a vitamin D deficiency at this point! This isn’t healthy, Amelia.” She sighs and perches on the end of my bed. “What if you just spent a couple hours on the patio? Bring your laptop and finish whatever you’re watching out there. That’s not asking a lot, is it? To get me off your case?”
It might be, but the worry is etched deep in her face, so I change into a fresh T-shirt and shorts and drag myself into a patch of sunlight in our backyard. The patio is covered in ants, so I settle in the grass and prop my iPad against one of the many sundials that my grandfather collected, which litter the yard.
I only have a few scattered memories of Gramps, but I do distinctly remember wandering around out here by his side when I was little and him teaching me about gnomons and styles and why his sundials with straight hour marks told time differently than his ones with curved ones (it has to do with the fact that the sundial’s face is a perfect circle but the Earth’s orbit changes throughout the year from circular to elliptical).
Back then, I was more interested in Disney princesses than scientific principles, but I did love the funny little sayings etched into the stone or metal of the dials. For example, the sundial next to the back door reads Let others tell of storms and showers, I tell of sunny morning hours. That one’s in English, but most of the others are written in Latin and I’ve long since forgotten Gramps’s translations.
Sundial mottos usually reference time in some way. The one holding my iPad at the moment reads: ultima latet ut observentur omnes.
Omnes like omni, probably. Something about all, or maybe always? I open a translator app on my phone and type in the phrase. As soon as I see the words in English, I wish I hadn’t.
Our last hour is hidden from us, so that we watch them all.
I can’t appreciate any “seize the day” sentiments when my last hour doesn’t feel so hidden at all. More like it’s dancing right in front of me taunting: Nanny nanny boo boo, I’m gonna get you.
Crap. Coming out here was supposed to let me dip a toe back into the world. Vacation week is nearly over and I have my regular appointment with Dr. Wah tomorrow, where I’m sure she’ll tell me how much worse my MELD score is, even if the yellow I thought I saw in my pupils the other day was either a trick of the light or has gotten better since. I know I’ll have to be back in school on Monday, given how alarmed my parents are growing about my total withdrawal from everything and everyone. Yet I can’t imagine mustering the strength to wander past our property line.
And this is exactly why. There are hidden minefields everywhere. I thought the backyard would be safe, and still the shadow of death found me within five seconds.
“Excuse me, do you have the time?”
It’s a joke Dad makes at least once every time we’re out here, surrounded by Gramps’s collection, but I hadn’t heard or seen him approach so I jump sky-high. My elbow sends my iPad toppling into the grass.
“Dad! You shouldn’t sneak up on people—you scared me to death!”
He winces at my word choice, and there’s the shadow, peeking out again. If anyone ever wanted to be hyperalert to just how many of our offhand sayings are morbid, they should try getting diagnosed with a terminal condition. I’m dying to know. Stop, you’re killing me. I’ll just die if I can’t get tickets. How can you drive this death trap? I’m so hungry, I could murder this pizza. I wouldn’t be caught dead wearing that. I’m going in for the kill. It’s your funeral. Over my dead body. Knock ’em dead!
“Sorry, Sunshine. I didn’t realize you were lost in thought.”
I focus my attention on untangling my headphone wires and avoid his eyes. “I’m not. Mom’s on my case about getting fresh air, so I’m continuing my binge out here.”
“Netflix and chill? Can I join you?”
I choke. “Um, Dad, that definitely does not mean what you think it means.”
“It doesn’t mean ‘hang out and watch consecutive episodes of a show’?”
“Er, no.”
“Oh. See, what would I do without you keeping me on fleck?”
“On fleek, Dad, but a. never say that again, and b. you don’t need me; you need urbandictionary.com.”
“I need you, Sunshine,” he says quietly.
Peekaboo, taunts the shadow.
I swallow and tr
y to compose a response, but before I can formulate anything he’s plopped down next to me and crossed his legs. “So . . . what are we watching?”
“Project Runway, but—”
“Sounds good.” He reaches past me and unplugs my headphones, then hits Play.
He’s not out here to watch a show with me, I’m sure of it. My guard goes up, but when five minutes go by and he doesn’t attempt to initiate any conversations, I relax a little and settle onto my stomach.
We finish the last few minutes of my current episode and begin another.
Aside from the fall of tenth grade when we watched every season of West Wing together, my father adheres mainly to a TV diet of sports, CNN, and home renovation shows, so I’m having a hard time believing he could be into catwalks and catfights. But, to his credit, he does seem to be paying close attention and I have to confess it’s kind of nice to just be with someone after my forced isolation this week.
When the credits roll, I ask, “How much would someone have to pay you to wear an avant-garde jacket made from the contents of a Jersey City storage unit out in public?”
I slide a quick look at him and note the smile poking at the corners of his mouth. “I don’t know,” he says, “although I kind of dig the cape the nonbinary contestant created. The way they repurposed that carpeted toilet seat cover was pretty genius. But the tattoo artist? C’mon. She’s clearly only getting through these rounds because the producers need someone in the sewing room to stir up the drama.”
“Totally. The judges aren’t even being subtle about it.”
The countdown to the next episode begins and I settle back into place, but he pushes the pause button. Warning bells clang again. I knew he had an ulterior motive for being out here.
“So . . . ,” he says, with a breathiness that holds his nerves in it. The fact that my dad is nervous is hard to reconcile with the version of him I carry around in my heart—this all-powerful superhero who would kiss my boo-boos and make them better, and toss me over his head in the community pool, masterfully swat any creepy crawling thing that made their way into my bedroom at night, and use his bike to chase down cars so he could offer a salty-worded lecture to whoever just drove around the flashing lights of my stopped school bus.
“Mom and I have been trying to give you space, but we’re worried.”
I knew this already. They’ve both tiptoed around me this week. Neither has tried to “wake” me when they’ve checked in, though I’m sure they could tell I wasn’t really asleep. There’s been no mention of my previous—reluctant—agreement that April vacation would be our deadline for contacting Amherst’s admissions department to ask about options for the fall. They haven’t forced me to join them for any meals.
But Mom’s pleas for me to get fresh air today held more than a whiff of desperation and I was half expecting this “big talk,” just not the person delivering it.
“So you drew the short straw?”
“Hey!” Dad says. “I may be a little . . . emotionally challenged, but I can handle a chat with my daughter without being forced into it. We didn’t draw straws—and I resent the accusation!”
I don’t point out that he just sat through an hour plus of sewing challenges to avoid starting this “chat.”
“So rock, paper, scissors then?” I ask.
He sighs. “She always plays scissors! Why would she pick today to play paper?”
In spite of my own nerves, I laugh, sitting up and tucking a leg under me. “I hate to break it to you, Dad, but you’re not emotionally challenged. You’re actually super-embarrassing about your, um, I think the right word could only be effusive shows of affection. Remember when I had exactly one line in Once Upon a Mattress in fifth grade and you stopped the whole play after I delivered it with your very embarrassing standing ovation?”
We both smile at the memory, then I force myself to be serious because it’s suddenly really important to me that he really, truly believes I don’t see him as some emotionless robot just because we don’t indulge in daily heart-to-hearts. “Dad, I always know you do, okay? Love me, I mean.”
He smiles and bumps my knee with his. “Thanks, Sunshine. That means a lot to me. Except that’s not what I’m referring to. I think our family is pretty decent about showing our love, in our own goofy ways, but we don’t really talk about stuff so well. Especially the, well, the darker stuff. And I didn’t want you to interpret my avoiding that as some kind of indication that I’m not here for you during all of this.”
“I don’t,” I whisper around a lump in my throat that appears.
“Good,” he says. Then, more quietly, “So, how are you? Honestly.”
My pulse races because it feels dangerous to continue this conversation, not because I don’t expect him to be supportive, but more because it feels like there’s no going back from here. Like somehow, having an open discussion about this stuff, the way two grown-ups would, is this line in the sand that would mark the exact moment I stop being his little girl. I don’t know if I’m ready for that. I know how to be his Sunshine. I don’t know how to navigate “two mature people having an adult conversation” with him yet.
But I’m eighteen years old; I’m not a little girl, no matter how much of a baby I feel like these days. And I can’t be alone with all these thoughts anymore—I just can’t. I’ll break. So I bury the edgy jitters and confess to him: “I’m upside down.”
My dad grimaces. “Yeah, I can see that. I might need more to go on, though, sweets.”
I sigh. “It just seems like everything I believed in was wrong and backward. I thought I’d figured all this important stuff out about myself and what I cared about and what I wanted to use my time and energy fighting for and I was feeling really confident about who I was as a person before all this. But now . . .” I sigh. “But now this happened and it—it pulled the rug out from under me. Not only because of all the medical stuff and the uncertainty about . . . you know.”
He nods. “Yeah.”
“But also about who I am as a person, ya know?”
“That’s easy, though. You’re my Sunshine, best daughter a guy could ask for.”
I smirk and award him a small smile. He doesn’t disappoint, my father. “Thanks, Daddy, but that’s not what I meant.”
“Gimme an example, then.”
I sigh, then tell him about Sibby’s accusation that I am full of bravado but not bravery.
I’ve missed Sibby something fierce this week; as out of it as I’ve been, a small part of me has been keeping tabs on how many days until she comes back from New York (two more, at the moment). I’m still upset about our fight, but so much has happened since then and I don’t even know which parts of my anger about the way things went down with us is directed at Sibby versus at me versus at this fucking disease that’s ruining my life—literally. It’s all a jumble. What I do know is that we won’t be angry at the other forever, especially since I might not have forever.
But Sibby challenged me on the one thing I most needed right now: my identity.
As frustrating and impossible as it’s been to try to get everyone else to see me as anything but Dying Girl, at least I was able to see myself as fierce and confident and kickass.
And now I’m doubting all of that.
Which hurts.
I try to hold my tears in, but a couple slide down the crease of my nose. I swipe them away when they reach my lip, and my dad shakes his head, moves my iPad to the side, and pulls me in for a hug. He’s wearing one of his many T-shirts advertising the hardware store, and this one’s been washed so many times that nestling against it is like nosing into a burrow of bunnies. He smells like Bounce fabric softener and Dad.
There was a time a hug from my father could make the whole world safe and friendly again. I’m too old now to accept intellectually that he has this power, but a part of me still believes, and as he holds me close my few remaining tears air dry on my cheeks.
“Does Sibby need me to drop-kick her all the
way back Down Under?” my father mutters into my hair.
I muster a smile and turn my head so I’m not speaking into his shoulder. “Nah. She’s so tiny, I’m pretty sure I could handle it myself if I wanted to.” I pause. “But I don’t. I just want to know whether she was right.”
My father releases me from his embrace and considers me for a few beats. “You want me to answer that?”
I nod, bracing for the truth. Dad likes to joke around, but he’ll always be brutally honest with you if you ask for it.
What I’m not expecting is for him to begin with, “Did you ever wonder—”
I cut him off with a groan. “Hey, I’m kind of having an existential crisis here, so I’m not sure I care what hair color they put on the drivers’ licenses of bald men.”
“Ha! That’s one of my favorites.” He flicks my arm. “But if you’d let me finish, I was going to ask if you’d ever wondered why I like ‘Did you ever wonder’ questions so much.”
“I figured it was because you love being cheesy and making us roll our eyes at you.”
“Well, yeah,” he agrees, “that’s a definite plus. Your mom’s world-weary sighs are seriously cute. But the real reason I like them is because they point out how little sense we humans make. And how contradictory we can be.”
He takes a breath and adds, “Mostly, I love that they force people to answer with the greatest three words in the English language.”
I squint at him. “I love you?”
He scoffs. “Meh. Those are okay, I guess. But I prefer mine.” He ticks them off on his fingers: “I. Don’t. Know.”
“Seriously? What is remotely great about being clueless?”
He smiles. “Nothing. But if you’re the curious type, the not knowing is going to make you want to find answers. And if you have curiosity, you have everything: 1. It’s nearly impossible for you to be bored. 2. You’ll be a lifelong learner. 3. You’ll probably be a traveler. 4. You’ll definitely be an empathetic person, because you’ll want to learn people’s stories and what makes them tick. So bravery/bravado? To me it doesn’t matter. I don’t care what other qualities someone has, because curiosity’s the critical one.”
