CHAPTER TWENTY-FOUR
They’re the last to arrive at Walt’s house after the funeral. Karina and Grace hover awkwardly behind Richard in the living room, waiting for him to continue walking or sit down or do something. He just stands there, paralyzed, observing empty space. His upright piano, a fixture in his childhood home as seemingly permanent as its foundation, is gone. There is nothing in its place. Richard stands still, trying to comprehend its incomprehensible absence, feeling as if the only record of his childhood has been expunged. As he imagines his dead father erasing his past and ALS erasing his future, there is too little of him left. Time feels as if it’s collapsing in on him, and his bones are suddenly too fragile, his skin too transparent, his presence sliced too thin, and he wonders if he might cease to exist right then and there.
“Whe-did-he geh-ri-do-vit?” he asks of no one in particular, his voice barely audible even with the voice amplifier.
Karina moves to his right side, wraps her arm around his waist, and holds him by the hip, offering him stability.
His brother Tommy wanders in from the kitchen. “What’s going on?”
“Where’s the piano?” asks Karina.
“I have it. Lucy and Jessie take lessons. I hope that’s okay.”
Relief washes through Richard. He breathes, and he’s back in his body. Lucy and Jessie are his nieces, ages nine and twelve. He nods.
“Yes. Thas-per-feck.”
“They’re really good. I tell them they get it from their uncle.”
Richard smiles with his eyes and looks down at his feet, uncertain how to handle this unexpected compliment.
“You guys hungry? We’ve got food in the kitchen. Grace?”
“Sure.” Grace follows her uncle into the other room.
Richard takes a seat in the rocking chair and looks around the living room as if he were visiting for the first time. It may well be the last time. Much like its former occupant, the house is old and outdated. The floorboards are worn and creaky, the paint on the cracked walls is chipped, the ceiling is mottled with water stains. With the exception of the missing piano and the additions of a giant-screen TV and an oversized recliner, the living room is furnished exactly as Richard remembers it.
There are still no curtains on the windows. His mother believed in sunshine and having nothing to hide. She often said she wouldn’t do anything she wouldn’t mind the neighbors seeing. On this four-acre, heavily wooded property, the nearest neighbor would’ve needed the Hubble telescope to see Sandy Evans smoking cigarettes in her pink curlers and nightgown.
Even though his mother has been gone for twenty-eight years, it’s her absence and not his father’s that Richard feels most acutely in this room. She was his only ally in the family, the only one who truly saw and accepted him. Without his mother, he couldn’t have played piano. She arranged for his lessons, insisted on the money from Walt to pay for them, drove him to every lesson, every recital and competition, and defended his right to practice.
He remembers the time she put herself between Richard’s piano and Walt’s chain saw. Richard can’t remember what set him off. Maybe he’d had a half dozen beers, and the Patriots lost. Richard does remember the thumping of his heart in his ears playing percussion with the distant buzz of his father’s chain saw slicing through the branches of a maple tree in the backyard after Walt stood down, determined to destroy something. Richard remembers sitting at the kitchen table while he listened, his mother’s hands shaking as she measured out flour and salt for apple-pie dough. He remembers stupidly asking, “Can I play now?”—his mother answering, “Not now, honey.” He remembers he was ten.
She was so proud of him for getting into Curtis on scholarship. She died just before he turned nineteen. She never met Karina, never got to see him graduate or play professionally, never got to hold her granddaughter. She never knew that her son would someday have ALS.
He thinks his mother would’ve approved of Karina. What little his father experienced of her, he was never a fan. Walt didn’t trust anyone from out of town, never mind from out of state, never mind from Poland. His world played out within his zip code, his life revolving around his job at the local quarry, the town church, the bank, the school, and Moe’s tavern. He didn’t like that he didn’t know Karina’s parents, that he couldn’t judge what kind of family she came from. When asked about her religion, she told him she was a lapsed Catholic. The only kind of person Walt, a Protestant and faithful Sunday churchgoer, trusted less than a Catholic was a godless woman. He found no charm in her accent and didn’t appreciate her sophisticated vocabulary, which, even spoken in broken English, was far superior to Walt’s. He blamed Karina for his son’s name preference of Richard over Ricky when she had nothing to do with it. Walt took her to be uppity, a snob, a heathen, probably a communist, a lazy immigrant only interested in Richard as a ticket to a green card.
The grown-ups filter into the room carrying food and drinks and take seats. No one chooses the recliner. That must’ve been “the chair.” Richard’s not sure if everyone is staying off it in reverence to Walt or if they all find it too creepy, knowing he died there a few days ago. On Monday, his father was sitting in that chair watching TV. Today he’s in a box in the ground.
Grace says she isn’t hungry after all and joins seven of her eight cousins outside, sledding on the hill. They range in age from three to twenty-two, nieces and nephews Richard doesn’t know. They were all stone-faced and tearless during the funeral, seemingly more weirded out by their drooling, unfamiliar uncle than their dead grandfather. It’s probably easier to bear witness to the graceful exit of an old man than the sloppy, slow-motion, paralytic crawl to death that is ALS in someone who should be in the prime of life. The older kids snuck periodic glances at him as if on a dare, and when caught staring, their eyes fled to somewhere safer, often the coffin.
Brendan, age eight, wiry with a buzz cut, a sharp nose, and curious eyes, doesn’t feel like getting wet or cold and is sitting sandwiched between his parents, Mikey and Emily, on the small couch. Tommy and Karina are on the love seat. Tommy’s wife, Rachael, is outside, helping her two youngest kids up and down the steep hill. Everyone is eating deli-meat sandwiches and Buffalo chicken wings on paper plates. The men are drinking Budweiser out of cans, and the women are drinking white wine.
Richard watches his brothers eat, massive bites of bread, ham, and cheese churning around in their open mouths like clothes in a circular dryer window while they talk, and he’s a kid again at the supper table. Skinny, he ate modest meals, always a single helping, and finished quickly. Never allowed to be excused early, he felt as if he spent hours at the table every night, waiting in lonely silence as his brothers gorged on several platefuls of meat and potatoes. Unlike Richard, they were big boys with big muscles to feed. Athletes who were every day running on a field or bench-pressing at the gym, they were in good physical shape when they were young, but now, they’re both overweight. They’ve got beer guts and full-moon faces and beefy arms and legs that look stiff when they walk, like growing kids stuffed into last winter’s snowsuits.
“Want me to get you a plate?” asks Mikey, noticing that Richard isn’t eating.
“I-can’t-eee-tha.”
“You need one of us to hold the sandwich for you?”
“It’s not that. He can’t swallow the bites without choking,” says Karina.
“I-ha-va fee-ding tu.”
“There’s a tube in his stomach,” says Karina to wide-eyed Brendan.
“Can I see it?” asks Brendan.
“Sure,” says Richard.
They all sit, watching him, as if waiting in the audience for the curtain to rise and the show to start.
“One-a-you has-to-lif-my shir. I-ca-na do-it.”
Richard looks to Brendan and raises his eyebrows twice. Brendan tentatively leaves his seat, walks over to his uncle, and pauses. He looks back at his parents.
“Go-fo-rit.”
He gently lifts his uncle’s shirt, exposing a quarter-size white plastic disk flush with the upper part of Richard’s hairy stomach.
“Ew,” says Brendan, releasing the shirt.
“Brendan!” says Emily. “That’s not nice.”
Brendan quickly retreats to his seat between his parents. Mikey swats him on the head with a rolled funeral missalette. Richard’s shirt has fallen back down over his stomach, but everyone in the room is still studying the spot where the tube lives, imagining what they just saw.
“So what goes in that?” asks Mikey.
“It’s called Liquid Gold,” says Karina. “It’s like baby formula.”
“Tase-lie chi-cken.”
“Really?” asks Tommy.
“No.” Richard smiles. “I-am ki-ding.”
“What are you doing to fight it?” asks Mikey.
“Wha-do-you-mean?”
“Look at that guy who started the Ice Bucket Challenge, right? And the movie Gleason. Did you see it? That defensive back from the New Orleans Saints. He got ALS and started a nonprofit. Their slogan is ‘No White Flags.’ Guy’s an inspiration. A real hero. You can’t just take this lying down, Ricky. You gotta fight it.”
Former captain of their high school football and baseball teams, cornerback at the University of New Hampshire, Mikey sees every obstacle as an opponent that can be beaten, a game that can be won.
“How-do-you thin-I-shu fight?”
“I dunno. Look at what those guys did.”
“You-wa-me-to dum-pa bu-cket a-ice o-vah-my-head?”
Or block a punt? Get a trach and go on life support when he can no longer breathe? Is living at any cost winning? ALS isn’t a game of football. This disease doesn’t wear a numbered jersey, lose a star player to injury, or suffer a bad season. It is a faceless enemy, an opponent with no Achilles’ heel and an undefeated record.
“I dunno. I’d do something though. Start another challenge or make a documentary or something. Something that helps find the cure. The key is fighting and not giving up.”
“O-kay.”
“It’s good you’re still walking. Those other guys are in wheelchairs.”
“I-will-be in-one-soo.”
“Maybe not. You never know. You gotta stay positive. You should go to the gym, lift some weights and strengthen your leg muscles. If this disease starts stealing your muscle mass, you get ahead of it and build more. You beat it.”
Richard smiles. He appreciates the thought, but that isn’t how muscle atrophy in ALS works. The disease doesn’t discriminate between strong and weak muscles, old or new. It takes them all. Exercise won’t buy him more time. High tide is coming. The height and grandeur of the sand castle doesn’t matter. The sea is eventually going to rush in, sweeping every single grain of sand away.
“Goo-i-de-a.”
“I don’t know how you do it,” says Tommy. “I don’t think I could ever go without food.”
“Then-you-be gi-vin-up. This-tu-bis how-you fi-ALS.”
It ain’t sexy. Richard’s PEG tube and BiPAP aren’t interesting enough fodder for a movie or a global Internet phenomenon. His fight is a quiet, personal, daily struggle to simply breathe and consume enough calories to keep being here.
“It’s good to see that you two are back together,” says Emily.
“We’re not back together,” says Karina.
“Yah.” Richard smiles. “We-jus li-vin-in sin.”
“No,” says Karina. “There’s no sinning going on whatsoever.”
“That’s too bad,” says Mikey.
Emily laughs. “Well, that’s really amazing then, what you’re doing for him.”
Karina says nothing. Richard says nothing and doesn’t look in Karina’s direction, embarrassed that Emily has so easily articulated what Richard has never said. And although he’d like to, he can’t blame ALS for his silence.
“So, Ricky,” says Mikey. “We want to talk to you about Dad’s will. We already knew about this before he died, but he left the house to me and Tommy.”
Of course he did.
“But we talked it over and agreed that we’re going to sell the house and split it three ways.”
Everyone waits.
Richard repeats what he just heard in his head and asks, “Really?”
“Yeah. He had three sons, not two. That ain’t right, and we want to do the right thing.”
“Yeah, man,” says Tommy. “I hate that I never stood up for you when we were kids. Dad was really hard on you.”
“He could be a bullheaded bastard,” says Mikey.
Tommy nods. “We’re standing up for you now.”
It never occurred to Richard that his big, brave, tough jock brothers were scared of their father, too. To show any allegiance with their youngest brother would’ve risked being forsaken, ostracized, disowned. Like Richard. His brothers weren’t as macho as he thought they were. And he doesn’t blame them.
“He was also a great father,” says Mikey, his voice out of air, jaw clamped, wiping the outside corner of his eyes with his fingers. “Sorry you never got that side of him, Ricky.”
“You know, you were better at piano than either of us clowns have ever been at anything,” says Tommy. “He should’ve been proud of you. Jessie Googled you, and we all watched your performance at Lincoln Center.”
“Holy shit, man,” says Mikey.
“Yeah, you’re amazing,” says Emily.
“I wish Mom could’ve seen you play there,” says Tommy.
“Tha-means-so much to-me.” Tears spill down Richard’s face.
He never saw that coming. With the death of the autocratic dictator, their Berlin Wall crumbled, and his brothers were right there, waiting for him on the other side. Karina pulls a tissue from her purse, walks over to Richard, and mops up his wet face.
“Three ways,” says Mikey. “That’s the fair thing. It wasn’t right how Dad treated you. Our son, Alex, is a junior now, hasn’t willingly picked up a ball since he was six. He’s into musicals. Loves to sing and dance.”
“He’s really good,” says Emily.
“Yeah. And he’s a great kid. Can’t imagine doing to him what Dad did to you.” Mikey sighs. “And I wouldn’t be the man I am without him.”
Tommy nods. Mikey knocks back his Budweiser. Richard absorbs the acceptance and apology given to him by his brothers, and a space begins clearing inside him, a field stretched to the horizon, a morning sky, a universe of stars. Still overwhelmed and unable to speak, he silently thanks his brothers, one generation healing the wounds inflicted by another.
“I’m sorry to break this up, but we really have to get going,” says Karina.
“Can’t you stay another night?” asks Emily.
“No, we have to get Grace to the airport. She needs to get back to school.”
“Let’s do a toast to Dad before you go,” says Mikey, cracking open another can. “Can you pour beer into that thing?” He points his finger to the center of Richard.
Karina looks to Richard, and he nods. Every now and then, when he asks her to, she delivers a syringe full of wine through the PEG tube and wets his lips with the smallest taste, one of the few pleasures he still indulges in. It’s not the same as drinking wine from a glass. It’ll never be the same. But he can still taste a Château Haut-Brion on his tongue. He can still feel its warm infusion in his belly.
Karina attaches the tubing and flushes it with water. She fills a fifty-milliliter syringe with Budweiser and slowly presses on the plunger while everyone watches. Richard belches. Brendan laughs. It tastes like a teenage memory, horrible and wonderful.
“Okay, save some for the toast,” says Mikey. “Karina, you have your wine?”
She picks up her wineglass in her right hand, holding the syringe of Bud attached to Richard’s stomach in her left. “Ready.”
Tommy and Mikey raise their beer cans. Emily and Karina lift their wineglasses. Brendan raises his Coke.
“To Walt Evans,” says Mikey. “May he rest in peace.”
Rest in peace, Dad.