It will all subside.
Around four, Liam comes home. He yells hello from the front hall, and then I hear the television flick on. I wheel myself into the living room because I’m too lazy to walk and find him lying on the couch, channel-surfing.
“Hey. Aren’t you supposed to do homework before TV?”
“Homework’s done,” he says in a monotone.
“You just got home.”
“I did it at Kieran’s.”
“You’re sure?”
“Astriiiiiid.” He draws my name out in a long, irritated whine. “I’m sure.”
“Mmmkay. What do you want to eat?”
He stares at the television, ignoring me.
“Dude, give me something here. Otherwise, I’m picking and we’re having sushi.”
“Ugh. No way,” he says, twisting his face into a scowl.
“You used to like sushi.”
Liam mutters something under his breath.
“What was that, dear brother?”
“I said, since when do you know what I like?”
I hold my hands up in surrender. “Okay, okay. Clearly, you’re not happy with me. Want to tell me what’s going on?”
“Not really.”
I go to the television and turn it off, then block it with my body and the wheelchair. Sometimes I feel like every decent conversation I have with my brother requires me to put myself between him and a screen. “Can you talk to me?”
“I was watching that.”
“You haven’t done your homework yet. I’ll bet you one hundred dollars.”
He doesn’t respond, which tells me I’m right, because otherwise he would definitely take me up on my bet.
“So tell me what’s going on, and I’ll forget about the homework and let you pick dinner and control the remote for the rest of the night. That’s a very fair offer.”
He frowns at me, then relents. “You’re always really sick. And everyone’s talking about you at school. And it’s annoying.”
I start to smile, but quickly stop myself. I can tell he wants to be taken seriously. “You’re right. It is annoying.”
“And you’re kind of famous now, and people are saying mean stuff.”
“Like what?”
“Like that Mom and Dad are letting you die because they don’t care about you.”
I roll myself closer to the couch. “I’m sorry, buddy. Those people are wrong, though. It’s actually the opposite. Mom and Dad care so much that they’ll do anything they can to keep me here. In fact, I wish they didn’t want to do so much.”
“What do you mean?”
“Well, I’ve been sick for a while. You know?”
Liam’s eyes search my face. Then he nods quietly.
“Right, so Mom and Dad want me to get better. But if I can’t get better, I think the best thing they can do for me is not to force me to feel even worse than I already do. Does that make sense?”
“Kinda.” He looks back at the black screen of the television. “I just don’t want you to go anywhere else. Like, don’t go on any more road trips. Okay?”
“Okay. No more road trips.”
“And I do like sushi.”
“See, I knew that.”
He takes the menu from me and picks out way more rolls than he can possibly eat. I let him.
58.
When Mom comes home, Liam is passed out next to me on the couch. She lifts him gingerly from under the blanket and carries him to his room. A moment later, she reappears in front of me.
“You had sushi?”
“Yup.”
She yawns. “Any leftovers?”
“Yup.”
“Great, I’m starving,” she says, going to the kitchen and opening the fridge. “I didn’t eat that whole shift. Just one of those days. Sometimes everyone decides to have a baby at once, and it’s like—”
“Mom.” I cut her off. “We have to talk about the trial. Please?”
She comes back into the living room and stands over me, a plate of sushi in one hand. “You have no idea what this is like for me. Losing you.”
Heat flares in my chest. “You have no idea what this is like for me, though.”
“Astrid.” Mom sits down and puts the plate on the coffee table in front of her. She tugs her hair loose from its haphazard workday bun, letting the curls cascade over her shoulders. “Don’t be angry at me, my girl. You think I don’t know that? But you’re my child. I brought you into this world. You’re asking me to let you leave it. You can’t know just how impossible that is.”
“Exactly, Mom. I’m never going to have a child. I’m never going to know what that feels like. Just like I’m never going to see the Pacific Ocean, or ride in a self-driving car, or go to college, or travel abroad, or watch Liam grow up. I’m not going to be able to hold your hand when you’re dying.”
“I don’t care about that.”
“I do, though. I’ll miss everything, Mom. I just want control over this one thing.”
Mom picks the rice off a piece of spicy tuna roll and eats a few grains, nothing more. She doesn’t say anything else.
Eventually, I wheel myself back to my room. Getting out of the chair and into the bed by myself isn’t easy. My legs won’t do what they’re supposed to; they’re stubborn, like they’ve been asleep and now they have that numb, gummy feeling, except I can’t wake them up. I get the chair as close to the bed as I possibly can, hold on to the headboard with one hand and my sheets with the other, and try to guide my body onto the mattress.
It doesn’t work. I end up on the floor, slouched next to the bed.
“Dammit.”
Suddenly, it all comes crashing down over me. The reality of being completely dependent on other people. The reality that this is only going one way, that there’s no turning around. Tears come hot and fast; I practically choke on them. I gag on the snot that pours from my nose.
And then, there’s my mother. She just appears, like she always seems to when I need her, and scoops me into her arms and rocks me like I’m someone’s newborn baby she’s just welcomed into the world. Or like I’m still her newborn, the one she brought into this world herself.
“My girl. My sweet, brave, stubborn girl. Okay.” She holds me tighter still. “Okay. I hear you.”
59.
On Sunday, Mo finally has a day off from rehearsal. It’s not that cold for early March, and he pushes me outside, just as far as the little grassy patch on the corner of my block. We sit bundled in the midday sun, watching the cars.
“I wish we could go up the monument,” I say.
He nods. “We’ve seen that view, though. So many times.”
60.
Chloe texts me in the afternoon and tells me to check the vlog channel. I dread looking at the page. I don’t want to know anymore how many people have clicked and shared and liked. I’m tired of Google alerts pinging me when there’s another misleading internet story about me. I’m tired of being a person other people care about.
I check it anyway, though, because Chloe says so, and I’m surprised to find a new video. We haven’t filmed anything else, so I have no idea what this is. On-screen, Chloe steps in front of the camera and then leans in to adjust the focus.
Hi, everyone. Thanks so much for watching Astrid’s videos, for sending your best wishes, and for making donations. I’m Chloe. I’ve been taking the videos. Astrid and I have been best friends since, like, forever. I mean, it sounds cheesy, but she’s the closest thing I have to a sister.
She pauses there. Her eyes shimmer.
Anyway, many of you watched Astrid’s most recent video, and a lot of people seem to have very strong opinions about her decision not to pursue cryopreservation, and to discontinue treatment for cancer and undergo palliative care. I mean, um, we who love her have strong opinions about that, too. Because, you know, we love her. Like in real life. But a lot of you seem to think you know better than Astrid does about what might be the best choice for her. So we though
t—well, I thought—you should hear from someone else who has a point of view on this. Before you judge her, or any of us.
The camera cuts out, then starts up again. It takes me a minute before I realize that we’re now in my own kitchen. My mother sits by the window, holding her own camera awkwardly at arm’s length. It’s late, and her face is lit only by the too-bright overhead.
Hello, everyone. I’m Astrid’s mother. I’m not very camera-ready, sorry. I’m just going to … do my best here to tell you what’s going on. Astrid had a seizure while she was on her way back from Arizona. She was hospitalized there, in a medically induced coma for three days, and as soon as she was awake and strong enough, we transported her home. Her tumor has grown, but …
She looks away, then back at the camera.
We’re hoping for the best, still. She’s a fighter.
Pause.
And I want to thank you all for … caring. Even if you disagree with what Astrid wants to do now.
Pause.
I was … uncertain about all of this. I was uncertain about Astrid’s original idea to pursue cryopreservation. About the idea of videoing the whole thing and asking strangers for money. I didn’t like that very much at all. And now, certainly, about her decision to discontinue treatment—well, you can imagine. I’m her mother. I’m not as … I wasn’t willing to see that we might not be able to cure this, to accept that Astrid might want to seek out alternative possibilities for how to live the rest of her life. And for her death. I thought she could just fight, and then she’d win.
Her voice falters briefly, but she holds herself together.
The truth is, that’s not fair to her. She’s only human. She’s doing her best. If there is no cure for Astrid, that’s on us, not her.
My face burns. Mom laughs uncomfortably.
Astrid loves science. She always has. When she was little, she used to mix different things together in our kitchen—you know, seltzer water, baking soda, food coloring, whatever she could find—to see what would happen. She became interested in the brain in particular after she first got sick, two years ago, and I think she would make a great neuroscientist one day. She loves life. But she also wants to die on her terms. And I …
A tear rolls down my mother’s cheek, but she ignores it.
I can’t say now—after sixteen years of raising my daughter to be an independent thinker—I can’t say, “You have to live and die on my terms, not yours.” So I’m ready to support whatever choices she makes for the rest of her life, however long that might be. Whatever those choices are, they’ll be the right ones for her. I want to thank those of you who have supported her journey. And for those of you who think you’d know better how to handle this, well, I hope you never have to find out how wrong you are. Okay, that’s it. I’m finished. Thanks.
The video cuts out.
I didn’t feel myself starting to cry, but my face is wet.
61.
Dear Dr. Fitzspelt,
Thank you again for hosting us in February, and for the tour. I wanted to let you know that I have decided not to pursue cryopreservation after my death. This might sound weird, but I also want to thank you for helping me come to that decision. Not because your program wasn’t compelling, but because you helped me understand what I wanted from the end of my life. I want to write the story myself, as you said. I’ve found a better way to do that.
I hope you do find a way to revive your clients one day. I have faith that you will.
All my best,
Astrid
62.
Mohit’s show at the Regattabar is on a Wednesday in the beginning of April. Mom takes me shopping at T.J.Maxx for a “special-occasion dress,” as she calls it, although I’m not convinced that you’re supposed to wear a dress to a jazz club. I sort of imagined wearing black jeans and a black T-shirt and maybe dark sunglasses, but Mom doesn’t seem to agree with my vision. As she flips through the rack of “Off the Runway” dresses, tagged in purple with their discounted prices, she slings possibilities over the crook of her arm: there’s a royal-blue silk with an asymmetrical hem, a red halter, something with pink tulle.
“Mom, no. I would never wear any of those.”
She rolls her eyes and keeps digging. Then my hand grazes soft black lace. When I pull it out from the rack, I know it’s the one, even without trying it on. The dress is stretchy, with long sleeves but a short skirt, like a long, fitted shirt. It’ll cover up the now-defunct chemo port on my chest and the IV scars on my arms but show off my legs, which still look normal even if they don’t work the way they used to.
“That’s it,” Mom says, nodding. “That’s the one.”
I check the purple tag. It’s pricey, even at its steep discount. Mom puts her hand over mine and grabs the dress.
“It doesn’t matter,” she says. “We’re not looking at price tags today.”
In the dressing room, Mom helps me pull the lace over my sunken chest and bony rib cage, and because it’s so stretchy, I’m not even swimming in it. It just encases my body, what’s left of it. I run my hands over the soft fuzz that’s grown back across my scalp and smile in the mirror. Lately, all I’ve seen when I look at myself is what isn’t there anymore: the flesh and muscle, the color in my cheeks, the energy I used to have. But right now I look just like myself.
At the checkout counter, the woman behind the cash register eyes both of us. My story faded easily from the public’s interest, gone as quickly as it came, but we still occasionally get looks of recognition. I see the moment in the cashier’s face when she remembers why we look familiar.
“Yes, it’s us,” I say. “The kid who wants to die and the mother who’s willing to let her.”
“Astrid,” Mom whispers.
The cashier looks mortified. She doesn’t say anything, just slips the dress into a plastic bag.
“We don’t need the receipt,” says Mom. “The dress isn’t coming back.”
As we make our way toward the automatic doors, the woman calls after us. “God bless you both!”
Outside, in the cold of early spring, Mom and I take one look at each other and burst into a fit of giggles.
* * *
The Regattabar is not the smoky jazz club I’d always imagined, probably because smoking indoors in public places is now illegal in Massachusetts, which is just as well, because lung cancer isn’t high on my list of must-haves. But it is warm and hazy, with low light and tables facing a small stage with a parquet floor. Mo had to be here early, so I came with his parents.
“You all right, dear?” Mr. Parikh lets me lean heavily on his arm to get to the front of the club. He looks me over with concern as he settles me at a table.
“I’m good, thanks. Where’d Mrs. Parikh go? Want to sit?” There are two more empty seats at my table, but he shakes his head.
“We’ll take our own table. I promised Mohit we wouldn’t sit right in the front.” He chuckles.
“Oops. Well, I made no such promises.”
“I think you can get away with whatever you want.”
I order a Coke from a waitress, and Mr. Parikh tells her to add it to his bill.
* * *
When Mo sees me, it’s almost like he’s seeing me for the first time. His face jolts like he’s just had an electrical shock, then slides into a smile.
His group is just the opener for some bigger and fancier jazz ensemble that isn’t composed of three college nerds and a high schooler, but it doesn’t matter. I already know, as soon as Mohit puts the saxophone to his lips, that I won’t remember the real act anyway. When he plays, it’s just how I thought it would be: like floating on a calm ocean with the sun on my skin and no one else in sight except the two of us.
I close my eyes and pretend we’re already living in the future I’ll never see, the one where we’re grown-up and he’s a musician and I’m a scientist and we live in New York City and he headlines at the jazz clubs and I sit in the front and drink fancy cocktails. I know each tune before
he plays it, even the ones he improvises. Every note is perfect.
* * *
The apartment is dark when Mohit wheels me inside. I can see Mom’s light on under her door, but everything is still and quiet.
“You were pretty great tonight,” I tell Mo one more time, even though I’ve been gushing all the way home.
“Thanks. It was pretty great to have you there.”
“Sorry I sat right in the front.”
“You can get away with it on account of that dress.”
I swat his arm lightly. “Oh, I see. So all you care about is how I look, huh? How enlightened-twenty-first-century male of you.”
“Yeah, yeah. Whatever. You can get away with anything because of how intelligent and humorous and persistent and kind-hearted you are. Better?”
I nod.
He kisses me, then grins. “And also because of that dress.”
Then he kisses me again. I tell him to carry me to my bedroom, and he does, and shuts the door behind us.
63.
Mom declares the next day a Sunday, even though it’s actually a Thursday. It’s her day off, and she tells Liam he’s playing hooky, too. He practically levitates, he’s so excited. Mom makes pancakes and we hole up on the couch, watching a marathon of The Great British Baking Show on Netflix.
“My kiddos,” Mom says, settling herself between the two of us. Liam snuggles in under the throw that’s draped over our laps. “I did pretty good with you two, I must admit.”
“Not bad,” I concur. “Could be worse.”
On the show, a cab driver with a deep scar on his temple is making a 3-D pirate-ship scene out of chocolate cookies and marshmallow fondant. He leans over his pastel workstation with a piping bag squeezed between both hands, his face obscured as he paints the most precise patterns on the edges of his pirate ships.
“This guy’s going to win!” Liam shouts. “Look at that. That’s awesome.”
“No, he messed up his technical challenge. The girl with the round glasses is going to win.”
My phone vibrates in my pocket. A text from Chloe.
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