Fear of Missing Out

by Kate McGovern

  “Mom.”

  “And you want to throw that away? For what? For what? No. Absolutely not. You’re my child. You’re not—no.”

  “Okay, Max. Max.” Dad crosses the room and puts a hand on my mother’s shoulder. “Breathe. Breathe. Calm down for a moment.”

  “Calm down? Really, Richard? You’re going to waltz in here and tell me to calm down about my daughter tossing around the idea of assisted suicide? Really?”

  “It’s not assisted suicide, Mom. It’s palliative care. There’s a big difference.”

  “The end result is the same, Astrid. It’s my daughter, giving up on her life before she has to.”

  “She’s my daughter, too,” Dad says gently. “And I’d like to discuss this privately.”

  Mom throws her head back and laughs, practically guffaws, at the ceiling. It’s a disconcerting, creepy laugh, throaty and unnatural, nothing like her. “Oh, that’s perfect, Richard. She is your daughter, you’re right. She’s your daughter in one visit a year. She’s your daughter in occasional phone calls. She’s your daughter when you come sweeping into the hospital to play Superdad in an emergency. And now you want a say in this, too? Does everyone get a say except me, the person who brought her into this world and has kept her in it this long by fighting for every last goddamn possible cure?”

  “Okay, guys.” I close my eyes. “Guys.”

  “We’re not having this discussion, Astrid. I’m sorry. No.” When Mom shakes her head, her wild red curls spill across her shoulders. “No.”

  She storms out of the room.

  Dad watches her go. “Well,” he says finally. “Maybe it wasn’t very fair of you to put this on the internet before talking to her about it first.”

  “I tried,” I insist. But I can’t fight over this anymore. My head hurts. Everything hurts. When my mother said I wasn’t in pain, it should’ve been a question. She doesn’t know.

  51.

  Once the BuzzFeed story pops up, my face—in a still from the video—starts appearing on the homepages of every internet gossip magazine I didn’t know existed, all of which now seem deeply interested in my personal choices about life and death.

  The headlines tell their own stories. “How Young Is Too Young to Choose to Die?” asks one opinion piece. “Parents Choose to End Medical Care for Terminally Ill Daughter,” declares another, particularly inaccurately, since my parents have chosen no such thing and, as far as I can tell, haven’t even agreed to let me go through with this. But in the court of the internet, they’ve already been judged and condemned.

  These people have no right to call themselves parents. Parents are supposed to protect their kids at all costs. These people are doing anything but.

  Murderers. They should go away for this. Ur gonna let your kid die? You should die too.

  They’ll pay, if not in this life, then in the next.

  “It’s a slow news cycle,” Chloe says over the phone. She’s trying to sound sage, but I can tell from the slight waver in her voice that this is unknown territory, even for my most internet-savvy friend. “They’ll forget about you in a day or two.”

  They haven’t yet, though.

  I sigh. “Why does anyone care, anyway?”

  “I mean, you made them care. They care because they think they know you.”

  But they don’t know me. They don’t know anything about me, except the carefully curated little slivers of myself I’ve offered them. They certainly don’t know my parents. And now they think they have the whole story. Sour bile creeps up in my throat.

  I stare at my own image on the screen. My little remaining hair is matted over my scalp. There’s just the smallest bit of blue in the cancery wisps, through which the scar from my first brain surgery is visible again, a fine pink thread of tissue holding my skull together.

  Hours go by, but my mother doesn’t come back.

  52.

  Late in the afternoon, I convince my favorite nurse, a grandmotherly character named Celia, to take me downstairs. It’s the first time I’ve left this room since I got here, and she helps me into my own loose sweatpants and hoodie. It feels good to be clothed again. Almost human. Being out of the hospital bed and in regular clothes gives me a boost of confidence. I’m right. This is exactly why I’m making this choice.

  Celia takes me on a wheelchair lap around the first-floor lobby, where there’s a gift shop and a café with boxed sandwiches and one of those machines that shoots out coffee or cappuccino or a mocha or hot chocolate, all from the same spout. There’s no sign of Mom, though.

  But then, just as we’re headed back to the elevator, I spot her through the window. I almost don’t recognize her at first. She’s a stranger with curly hair, huddled on a bench outside the emergency room entrance. Smoking a cigarette.

  The automatic doors slide open, and the fresh air smells like a mix of sunshine and warm weather and exhaust from the highway. And as the wind shifts, smoke. Celia wheels me over, and steps discreetly aside.

  “Mom?” She notices me, then shifts her eyes away and lets out a heavy sigh. It’s the first time I’ve ever registered my mother being not happy to see me.

  “What are you doing?” I ask.

  “What am I doing?”

  “Since when do you smoke?”

  She drops the half cigarette to the curb and snuffs it out with the heel of her sneaker. “We all get to make our choices, don’t we, Astrid?” Her voice has a bitter edge to it that’s as new to me as the image of my mother taking a drag off a Marlboro Light.

  “I’m sorry I didn’t talk to you again before I made the video,” I blurt out.

  “We’ve had that conversation before.”

  “I know. I’m sorry. But I did try, and you didn’t really hear me.”

  “So now I’m Cruella De Vil of the internet? Bad Mom du Jour? That’s what you wanted? Everyone to judge us, and me, so you’d get your way?”

  The automatic doors slide open behind me, and a man comes out carrying a newborn in a car seat, his wife walking gingerly alongside them. He rests the car seat on the ground and unlocks the back door of an SUV parked with its lights flashing out front.

  “Congratulations,” Mom says. “Beautiful baby.”

  “Thank you.” As he closes the door on his newborn, now safely tucked away in the back seat, his eyes land on me. He smiles uncomfortably.

  Your kid won’t get cancer and die on you, I want to promise him. But I can’t.

  They drive away.

  “I didn’t want you to be judged,” I say finally. “I wanted you to listen to me.”

  She doesn’t say anything, just looks out over the parking lot and across the highway, where a magnificent landscape unfolds on the other side of a strip mall and high-rise condos.

  “I get it, Mom. You want me to do the trial. But the trial isn’t a solution. It isn’t going to work.”

  “It definitely won’t work if you don’t enroll in it.”

  “Have you seen all this?” I gesture toward the rolling IV next to me, dripping fluids and pain meds into my veins. “It’s not going anywhere. The trial is a Hail Mary. It’s a shot in the dark. It’s a fill-in-the-blank idiom meaning ‘highly unlikely to work.’”

  She doesn’t respond. Her eyes are full of tears, but none of them escape down her cheeks.

  I go on. “What the trial is highly likely to do, though, with almost one hundred percent certainty, is make me spend the last months of my life in treatment for something that refuses to be treated. That means more of this. And I don’t want that. I can’t control my cancer. This is a choice I can make. I can control this.”

  I pause there. I’ve started making some notes for my advance directive on my phone, following a form I downloaded from an organization that advocates for death-with-dignity laws. Voluntarily refusing to eat and drink is not considered assisted suicide. It’s just a choice. But for a sixteen-year-old, any choice about medical treatment—getting it, refusing it, you name it—requires parental consent.
Any directive I write will be worthless without my parents’ permission.

  “I mean, I can control this,” I repeat. “But only if you let me.”

  Mom still doesn’t say anything in response. She just sits there, kneading the muscle on one side of her hand over and over.

  “Mom?”

  “I heard you, Astrid. I heard you.”

  Then she gets up and walks away. A minute later, Celia’s hand is on my shoulder. She wheels me back inside, but my mother is already gone.

  * * *

  And she doesn’t come back, not for the whole rest of the afternoon. I talk to Mohit when he gets out of school, and I avoid the internet like the plague. An orderly brings another tasteless meal of chicken soup and green beans, most of which I leave on the tray. But all the time, I feel myself waiting.

  It isn’t until I’m pretending to be asleep that I hear the door click open.

  She runs her fingers along my bare arm, feeling the warmth of my skin, and puts her cheek against mine. Then she sits down and gently swings her legs onto the bed, so she’s resting next to me. She smells like herself. Even after days in this hospital, Mom still smells like home.

  53.

  I must fall asleep for real, because then I’m awake again, and Mom’s gone. It takes me a moment to register that it’s my parents’ voices in the hall outside that woke me up.

  “Maybe, just maybe, you should consider giving her what she wants here,” says my father.

  “Please, Richard. You have no right to waltz in here and suddenly start advocating for her ending her life prematurely. No right.”

  “That’s not what this is, Maxine. It’s not. It’s giving our daughter some agency. She’s sixteen—she’s not a baby. It’s not all our choice.”

  “It’s not your choice, that’s for sure.”

  “I’m her father, Maxine. You remember, the other half who brought her into this world?”

  Mom laughs. “And you think biology gives you the right to take her out of this world against my wishes? She almost died once before. She came back to us that time. She could still come back to us this time.”

  There’s a pause, and I have to strain to hear if they’re still talking.

  Eventually Dad’s voice comes back. “I’m not advocating for one thing or another here. I’m just saying, this is probably the last choice she gets to make for herself. You’re right, okay? I haven’t been as much of a parent to her as you have, not in a long time. You’ve raised her, and you’ve raised her well. You raised her to be brave. To be clear-eyed. To think for herself. If this is the last choice she gets to make for her life, shouldn’t we let her make it?”

  They go around and around, until finally my mother breaks down in tears and their voices quiet, and whatever else is said, I can’t hear.

  54.

  A small contingent of people calling themselves reporters gathers outside the hospital, trying to catch a glimpse of my parents going in or out. Celia fills me in, her voice low like she is sharing a secret.

  “You’re getting pretty famous, love.”

  “I don’t know why anyone cares how I want to die.”

  Celia wears a crucifix around her neck, a small one with Jesus molded into the gold cross. She runs her hand over it instinctively, as I’ve seen her do many times now. Then she clucks her tongue as she helps me prop up my pillows. “These people have nothing better to do.”

  “Do you think it’s wrong? Refusing medical treatment?”

  “I’m a nurse. It’s not my place to judge.”

  “But what do you think?”

  “I think…” She cocks her head at me quizzically. “Well, I think each of us makes our choices, and I think we make our own peace with our Lord, or with whatever or whomever we believe in. You’re very smart. You know what you want.”

  “Can you tell my mother that?”

  Celia winks at me. “Above my pay grade, love. But I’ll go outside and tell those reporters where to shove their questions if you want me to.”

  It hurts to laugh, like stretching a muscle that’s started to atrophy.

  55.

  They send us to the airport in an ambulance. While the EMTs pack me onto the gurney, Celia comes by and pats me on the leg.

  “Good luck, love.”

  She slips her hand in mine. It’s warm and wrinkled, soft, the way I remember my grandmother’s hands. I feel the cool of metal against my palm. When she walks away, I open my fist and see her crucifix there.

  I could be offended. I certainly would’ve been a year ago. Maybe I should be now. It’s not what I believe. But it’s her faith, and somehow, the gift feels like just that—a gift, not a judgment.

  * * *

  Almost as soon as we’re out of the ambulance, we’re accosted by a guy with a digital recorder. “Excuse me, ma’am, can I ask you for a comment?”

  Mom is loading our luggage onto the outdoor belt. She gives him a dirty look but doesn’t say anything.

  “Ma’am, why are you letting your daughter choose to end medical treatment?”

  “Sir,” a TSA agent interjects, “I’m going to have to ask you to step away.”

  The guy persists. “Why are you letting your daughter end her own life?”

  “Mom, ignore him,” I say through a clamped jaw.

  “Ma’am?”

  Finally Mom whirls around. “I’m not letting her do any such thing! I’m forcing her to die exactly the way I want her to, don’t you know that by now? And if you keep harassing us, I’m not going to let you have a choice in the manner of your death either!”

  The guy smirks and slinks off, and I know immediately that the narrative about Mom is going to shift from just “negligent parent” to “negligent parent with anger management issues.”

  “Mom.” I sigh. “We need to work on this. ‘No comment.’ Repeat after me: ‘No. Comment.’”

  “Oh, shut up, Astrid,” she snaps back.

  She’s never snapped at me like that. She’s certainly never told me to shut up. She looks as shocked as I am. Then she starts to laugh, and I start to laugh. And finally the TSA agent starts to laugh, probably because she thinks we’re unbelievably weird.

  “I’m sorry,” Mom says through her giggles. “It’s not funny. It’s really … not funny. But what the eff, right?” She spits out the “eff” like she’s actually using a curse word, which makes me laugh even harder. “Astrid! You know what I’m saying? Can’t they just let us be?”

  Her face is flushed and sweaty, and for an instant I’m full of affection for her, even though I feel like we’ve been at a mother-daughter standstill for days. “Mom, I kind of enjoy this version of you.”

  She pulls herself together and wipes her eyes. “Well, I’m glad someone does. Let’s just get home.”

  56.

  Two days later, we see Dr. Klein so she can explain what she sees on my most recent scans. I can already guess what she’s going to tell us.

  My astrocytoma has grown, in spite of the chemo. That’s why my vision has gotten progressively worse, why I can’t see in the periphery anymore. My tumor made of stars is finally closing in on me. And it’s pressing more heavily on my brain stem now, hence the shooting back pains. Hence the tingling and numbness in my legs.

  “So, Astrid.” I know what she’s going to say. Most astrocytomas aren’t this aggressive. My astrocytoma is like a Sesame Street segment I remember from when I was little: One of these things is not like the others. My astrocytoma isn’t like the rest.

  “She can still do the clinical trial though, right?” Mom asks.

  I sigh.

  “She can, yes. The tumor still hasn’t spread beyond the brain. But…” Dr. Klein doesn’t finish the thought. “Yes, she can. If that’s what you choose.”

  “It is,” Mom says quickly, at the same moment that I say, “It’s not.”

  “There’s no rush to make this decision,” says Dr. Klein, frowning at us. “Take some time to think about it. We can also consider …
other options.”

  “What other options?” Mom asks.

  She looks from me to my mother, her eyes heavy. “Palliative options.”

  Mom’s face tightens.

  I put a hand on her knee. “Mom, please. Can we go?”

  My mother’s eyes are already red, but they’re dry, like she’s cried these particular tears too many times. In her grief, she looks like a different person.

  We go home in silence, and I retreat straight to my room. I’m not going to fight with her anymore. She can’t force me. What’s she going to do, drag me to the hospital for the trial? Hold me down? I’m seething, but the sadness is even more pointed than the anger. I don’t want to spend the rest of my life fighting with my mother.

  57.

  The next morning, Mom pokes her head in my room and tells me to order dinner for me and Liam tonight. She’ll be working late. She doesn’t say anything about anything, just tells me to order whatever we want. “And school sent work home. Don’t forget about it,” she adds. Because keeping up with precalculus is a super-high priority for me right now.

  I spend the better part of the day reading about voluntarily refusing to eat and drink. “It’s especially important not to take even sips of water,” the internet tells me. You can live a long time without food, but not without water. A few days. Maybe ten. You have to make sure they don’t put a feeding tube in—that’s key. You might feel thirsty at first, but it will subside.