by Jen Malone
We wait more.
There is literally nothing more passive than waiting, and yet somehow, it’s utterly exhausting.
Around one in the morning, near the middle of our fifth episode, Dr. Somnath returns and the air rushes out of the room.
“I have some news,” she says.
22
I KNOW BEFORE THE SURGEON SAYS ONE WORD WHAT SHE’S going to tell us: I’m not getting a liver tonight. Her face is blank, but the slump in her shoulders clues me in and her exhale when she reaches my bedside seals the deal.
“I’m afraid it’s not the news you’ve been waiting for and I hate to be the bearer of it, but it looks like it’s not going to happen tonight. I’m going to have to send you home without this liver. I’m so sorry.”
If I’d been frustrated before tonight about all the different things I’ve been trying lately, pinning my hopes on each as a way to possibly make me feel better only to have them dashed one by one, this is the ultimate deflation.
I try to cover, shaking my head more aggressively than I mean to. “No—I—it’s good. I’m glad that man’s cancer hadn’t spread. That’s—great. Really great.”
My mother turns and takes my hand, squeezing hard. “My brave girl,” she whispers, and I have to tamp down my scoff.
I may have challenged Sibby on her definition of bravery, but even I know there is nothing brave about doing, well, nothing. All I did was sit here and wait. Which is what I’ll have to do much more of for the foreseeable future. A sigh slips out and I’m instantly guilty. A man got a new liver tonight because of someone else’s generosity. That’s a beautiful thing, even if it’s not happening to me, right?
Right?
“But this should mean you’re at the very top of the list for the next one, Li,” Alex offers, his voice echoing through the phone speakers.
I turn to Dr. Somnath. “That’s my brother, Alex.”
My eyes ask, Are you going to tell him or should I?
“Hi, Alex,” she says, her gaze on me, acknowledging. “It’s possible, of course, but it’s not probable. If I can explain the distinction: the matching system UNOS—the United Network for Organ Sharing—uses is a bit more fluid than that. Priority is given to patients with the most urgent need, which means that, honestly, it’s a little unusual Amelia was called tonight, given how asymptomatic she still is and what her MELD scores are.”
I refrain from telling her about my fatigue during derby practice and crossing the sand tonight, because I know that’s nothing compared to the severity of symptoms she probably means.
“How did she, then?” my mother asks. Her posture is slumped and I swear there are dark circles under her eyes that weren’t visible an hour ago. I flash back on the wonder in her voice earlier, before my shower, when she said, “I can’t believe we got the call.” Her voice is flat now, devoid of inflection.
“Well, here’s where Amelia’s blood type of ABO B works in her favor. It’s the most unique,” Dr. Somnath says.
That’s a kinder way of saying “rarest.” She makes it sounds as if I’m some special unicorn, when really everything would be so much easier if I was AB D, the universal recipient type. Then my body could accept literally any liver.
“Okay, not to be crass,” Alex says. He sounds so close but feels so far away. “But wouldn’t having fewer recipients on ‘the list’ who are ABO B essentially mean she’s got less competition for the ones matching that type that become available?”
“It can, in that respect.” She glances at my parents, and softens her voice when she says, “The downside is that there are fewer ABO B donors overall. Sometimes we’ll get a bunch in quick succession and other times it can be . . . somewhat longer between them.”
Longer than I have?
The question burns in my throat, but I shove it away and focus instead on my father’s hand, clammy in mine.
“The point is, there’s no real way to know when the call will come,” the surgeon says.
Which is exactly what Dr. Wah told us too.
“Essentially, all this means is that we’re back to waiting and hoping.” She pauses, then adds, “But not falsely,” offering a small smile to my father, which is grimly returned.
“For now, we’ll work to get you out of here so you can catch some rest tonight,” Dr. Somnath says. “However, it’ll be just a bit longer while we get all the paperwork done for your discharge. Someone will be in to remove your IV shortly and I hope the next time I see you the circumstances are much happier, Amelia. I’m sorry again.”
We all thank her and she departs. Even though we were told we wouldn’t be leaving imminently, no one makes a move to unmute the TV.
“I guess I should try to get a couple hours’ sleep before I have to leave for the airport,” Alex finally says.
“No!” I surprise everyone—myself included—with the force of my protest. I take a breath. “There’s no reason to fly here now.”
If Alex comes home, he’ll only try to tease me out into the light, and now that the events of tonight are starting to sink in, I am being dragged under the darkness again. I’m so tired of fighting it. I want to be left alone to let it swallow me up.
“You should save your frequent flyer miles for a visit later, when everyone’s had some time to recover,” I say. “Right, Dad?”
My father hesitates, silently conferencing with my mother, so I go directly to the source again. “Please, Alex? What if you came next weekend instead, or the one after that? I’m not sure I want to be around people right now.”
“People?” Alex asks, clearly hurt that I’d lump him in with the masses.
Dammit. I hadn’t intended it like that. I am not fit for human-ing right now, that much is obvious, and it’s exactly why I don’t want him here, in my face. “You know what I mean.”
He sighs and Dad says, “Up to you, Alex.”
“It sounds more like it’s up to Amelia, but if that’s what you want, Lia . . .”
“Thanks, T,” I whisper.
Dad takes the phone into the hallway to continue talking to my brother and to call Babi. Mom slumps lower in her chair but jumps up five seconds later. She charges to the armoire, where she begins yanking my clothes out. At first, she folds them neatly, but soon her movements become haphazard as she abandons that and stuffs them into my duffel instead. Her back is to me, but the way she jerks her wrist across her cheeks several times during the process is telling.
My father returns just as the zipper snags when she tries to close it and she lets a loud curse fly. I exchange looks with him as he crosses the room to wrap his arms around her from behind. He tucks his chin into her neck and whispers something, his back sagging, while I cast about for the right thing to say or do.
Me. I caused this. Everyone is hurting and it’s all because of me. The guilt stabs my heart.
I can tell my mom is fighting to contain her tears, probably for my benefit, and I don’t know how much I can take of this. Yes, I watched her cry plenty the other night in the back seat of her car, but that wasn’t over anything personal. This is entirely different. These muffled sobs sound ripped from her gut, the same place where I currently have an empty yawning pit.
23
IT’S ALMOST FOUR IN THE MORNING WHEN I SHUFFLE INTO MY room and fall face-first on my bed. I use my heels to nudge off my ballet flats. It takes Herculean effort to push up again long enough to move my covers aside and crawl underneath them. Pressing my face into my pillow, I pray for the nothingness of sleep.
It doesn’t work.
The second my eyes close, the panic returns. I try to shove it away, but now my every fiber is shouting.
You wanted that liver.
Don’t be selfish. It wasn’t yours to have.
But you wanted that liver.
I don’t think I even realized how badly I did, until Dr. Somnath said “It’s not going to happen tonight.”
But what if “not tonight” is “not any night”?
I screa
m inside my head to try to drown out the doubts: FEAR IS NOT THE BOSS OF ME!
But the what-if is a splinter, ripping through every protective layer I have and burrowing, hard and sharp, into the base of my spine.
I try to soak the splinter in guilt, to loosen it. You should be happy for the person who had his dreams answered tonight. He deserves to live every bit as much as you do. Maybe more. Maybe he feeds the homeless or volunteers for a suicide prevention hotline. Maybe he doesn’t do either of those things. Maybe he’s no one special but is simply a really decent person. Or not. He still has every right to it.
My pep talk isn’t working. The fear creeps along my vertebrae, spreading its poison. It’s in my bloodstream now.
“Mom! Dad!” I shout, before I’m even fully aware of the words in my throat.
My mother charges in seconds later. She flips the light on and darts wild eyes around my room. “What? Amelia, what happened?”
I press my lips together tight and shake my head, because I won’t be able to answer her without crying. Her response is to exhale and sink onto my bed.
“Oh, baby.” There’s raw emotion in her voice. “I wanted it too.”
My dad appears in the doorway and Mom waves him off. “We’re okay. Switch the light off, though, please?”
She stands again and pulls back my covers before nudging my leg to signal I should make room for her. Then she climbs in beside me. Our knees fit against one another’s and we lie face-to-face on my pillow.
The sharp tang of fear retreats to the base of my spine and curls up in a ball, not altogether gone, but no longer taunting me either. I close my eyes as her hand rubs gentle circles on my hip. I feel about five years old . . . and it’s enough for now.
For a long time neither of us says anything, at least not with our voices.
Then my mother breaks the silence. “I’m so sorry I couldn’t keep it together better for you tonight.”
I suck in a breath and keep my eyes screwed tightly closed, so I don’t have to see what’s in hers. “Mom, I’m not one of your clients.”
Her fingers gently untangle strands of my hair. “Which makes it even more important. You’re my child and I’m the grown-up; I’m supposed to have the answers and I’m supposed to be strong for you. I believe it’s item number one in the job description of a parent.”
Her voice wavers on the last bit and I burrow into her shoulder and let her arms curl around me.
We stay like that for several minutes and then I whisper, “I think maybe this is item number one.”
She doesn’t respond, but her arms tighten. We cling to each other, the steady click of my flip clock keeping us company, and eventually my eyelids grow heavy. The sun will be up soon and tonight has been endless. Having her hold me is keeping the panic at bay enough that sleep seems possible. Not just possible, but inevitable.
Mom kisses my temple. “Go to sleep, sweetness,” she says, before setting her head back on the pillow next to mine. We’re both quiet as our breathing slows and evens out.
I’m on the very edge of sleep when I whisper, “Someone died tonight. Whoever’s liver that was to begin with.”
I open my eyes to peek at her as she brushes my hair from my face with her fingertips. Even after my shower, I can still smell traces of salt water on the strands, mingling with her vanilla lotion.
“Yeah, baby. Someone did,” she murmurs. Her fingers capture a small chunk to add to the wisps in her hand and she tugs gently. Our private “I love you.” “And someone else was saved.”
“Bittersweet,” I whisper, my eyelids fluttering closed again.
“Bittersweet,” she agrees, the last thing I hear before drifting off.
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24
TO DESCRIBE THE LAST FEW DAYS AS CRAPPY WOULD BE LIKE saying the Titanic hit a minor snag on its maiden voyage.
Easter’s never been a huge holiday in our house—we’re not all that religious—but this year I slept through it entirely. While thousands of marathon runners were #BostonStrong on Monday’s Patriots’ Day, pounding the pavement just across the river from me, I stayed under my covers, waking here and there when Dad delivered food on trays, like he used to when I had the flu as a little kid.
I mostly leave my phone across the room. Sibby’s in New York, probably still pissed off about our fight and definitely clueless about what happened back here, and I don’t need to see any Instagram pictures of my classmates living it up on their own vacations. After the other night, Will definitely can’t provide an escape for me anymore, though he did text me to say he was thinking about me and hoped I’d reach out whenever I felt up to it. Alex can get his updates from my parents.
But what is there to update? That my bloodwork at the hospital led to my being assigned a new MELD score of twenty-seven? (Twenty-seven. Three away from “needs a liver within weeks” and possible moves to faraway states.) That when I went to the bathroom yesterday I could have sworn the whites of my eyes had a tinge of yellow to them? That I’ve taken to peeing in the dark ever since and pretending to be asleep when my parents enter my room so they won’t notice?
That I don’t want to talk to anyone or do anything.
My disappointment over the missed liver is a cobra in a basket and at random intervals the lid gets knocked off and the snake uncoils and strikes.
All the negative thoughts I’ve tried to keep at bay since that day at the derby arena join forces and overpower the floodgate in my brain.
I’m Dorothy trapped inside the tornado as my world spins around me, only I don’t know if the place I’ll land at the end of all this will be anything like Oz. It could be better. Or worse. It could be blank nothingness.
I’m terrified.
It’s Tuesday afternoon when my phone rings, probably the only thing besides bathroom trips that could get me out of bed. I’m not harboring much hope of hearing from the hospital again so quickly, but my heart trips when the caller ID displays a number I don’t recognize.
It takes me three swipes to get the screen to respond because my thumb is instantly damp with sweat.
Calm down—it’s probably another robocall.
“Hello?”
“Amelia?”
“I— Yes?”
Okay, she sounds like an actual person, but that doesn’t mean—
“Hi! This is Claire Layzell, from the Cambridge Arts Commission. I sit on the committee that awarded you the grant for the mural?”
My breath whooshes out and then catches again as I simultaneously process that this isn’t a “We have a liver for you!” call, but in fact is probably about to be a callout. I haven’t touched the mural in six days now. I’d made good progress in the early part of last week, but once Thursday hit, that was that.
I scrub my T-shirt across a day and a half’s worth of fuzz on my tongue. “Oh! Yes, hi. How are you?” I’m trying to sound professional, or at least halfway normal, but my voice is froggy from underuse.
“We-ll,” she says, giving the word two syllables in a way that reinforces something is wrong. Usually this would cause my stomach to sink, but my reaction instead is surprisingly meh.
“I’m calling because I wanted to check in with you on your progress. I’m standing in front of your mural as we speak,” she says.
The contract I signed with the arts commission stipulated that all work had to be done prior to May fourth since the restaurant is slated to have its soft opening the following week. It’s now the middle of April, but I hadn’t been feeling particularly stressed about the deadline, especially because I knew I’d have this whole week off from school to work long hours on it. Except the thought of dragging myself out of bed and into the real world now . . .
The place in the core of my belly that usually bubbles up with eagerness whenever I contemplate getting my hands on that wall gurgles once, and disappears in a black hole of apathy. Who cares about a ridiculous
mural? What’s the point? Besides, Sibby was right—it’s just a generic design anyone could do; it doesn’t have to be me.
Just like that, biliary atresia claims another part of me and I know I’m possibly being melodramatic, but I don’t care. I don’t care about anything. I don’t even recognize myself.
I’ve been quiet on my end of the phone and Claire clears her throat. “So, maybe you could fill me in on where things stand? I ride by it every day on my route to work and was really excited about what I saw taking shape. When progress halted, it gave me pause. If you’re struggling with some aspect and I can be of any help, well, that’s the reason for my check-in.”
Her tone is coddling, like I’m some temperamental artist wrapped up in my creative genius and needing a dose of reality. Ha! I never used to be temperamental—I was exactly what Coach wrote in my college recommendation letters: hard-charging and enthusiastic. In the good ways. But that Amelia isn’t here right now. That Amelia has all the doses of reality she can handle and then some. That Amelia would never have even contemplated uttering the words that form instantly on my tongue.
The ones I now speak. “I’m sorry, but I have to quit.”
I don’t know which one of us is more surprised. There’s a small gasp on the other end and then . . . silence. I wait, scanning my emotions for the relief I thought would come from unburdening myself of this added pressure, which I really don’t need to be dealing with at the moment. Instead, I’m wooden.
Claire recovers before I do. “Can you please tell me why that is?”
“Um, I’m just having a really hard time making it work with my schedule,” I tell her. I keep my tone breezy; I don’t need any pity on top of her reproach. “I’m sorry,” I add once more.
“No, I’m the one who’s sorry.” Claire’s upbeat manner is gone, replaced by something much snippier. “I didn’t share this when I called to award you the grant, but the committee was very hesitant to give this project to someone so young. They were concerned that you’d ditch it when you got caught up in the other hoopla that comes with graduating high school. But I went to bat for you! I thought your application essay spoke to your maturity and I called them on their bias. You’re putting me in a difficult spot here.”
