Every Note Played(53)

“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 feeding 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 chicken.”

“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?”