Every Note Played(42)

“Four,” says Elise. “Thursday to Sunday. First week of March.”

“I can do that.”

“It’s too much,” says Karina.

“It’s four days, Mom.”

“I mean it’s too much, taking care of him. I’m up all night.”

“I’m young. I stay up all night all the time. I got this. You’re going to New Orleans.”

Elise smiles, patting Grace on the back. “I love this girl.”

They reach the beginning of the trail, where they began. Before stepping off the path and onto the paved road of their neighborhood, Karina looks back for a moment at the frozen reservoir, at the loop they just completed. Like her morning walk, her thoughts and emotions run in circles. Richard is living with her again, and caring for him is more than she can handle, but she can’t ask him to leave, and her entire life is a circle. She’s trapped, never getting anywhere.

“Okay, I’ll go to New Orleans.”

Grace and Elise high-five, celebrating their victory, but Karina doesn’t join in. The trip is a month a way. As she’s recently learned, anything can happen in a month.

They stop in the street in front of their houses to say a brief good-bye. Grace and Elise hug, and Elise wishes her good luck at school. Karina checks the time on her phone. They’ve been gone for forty-five minutes. She hurries to the front door, anxious to get inside, to sit at the table in her warm kitchen with a cozy hot cup of coffee.

She swings open the door, and her stomach drops. Without thinking, she runs toward the den, toward the piercing sound of the BiPAP alarm.





CHAPTER NINETEEN


Karina barrels into the den, breathless. Richard is propped up in his hospital bed, the mask askew on his face, much like it was at 4:00 a.m. He smiles sheepishly beneath it. She quickly sizes up the situation: he’s fine. But instead of feeling relieved, she’s pissed, as if he’s played the same cruel trick on her for the millionth time, and she stupidly fell for it.

“Is he okay?” asks Grace, running in right behind her mother, her voice high and terrified.

“He’s fine.”

Grace looks him over, assessing the state of her father herself. His face is alert and calm. He’s clearly breathing.

“Jeez. Okay, I’m gonna take a shower,” says Grace, only temporarily inconvenienced by the false alarm, her spiked emotional temperature already back to normal.

But Karina’s heart is still feverish, adrenaline whipping through her body, searching for danger. The shrill sound of that damn alarm sends shock waves through her nervous system, activating some automatic primal instinct for crisis. She can’t seem to override her response to it. But nothing about the BiPAP machine is yet life-and-death. He can still breathe without it. He breathes entirely on his own without it all day long. It only assists him at night.

So the sound of the BiPAP alarm shouldn’t send her running. The sound of his choking on rivers of goopy spit is life-threatening. He could aspirate and develop pneumonia. But oddly, she often ignores the first minute or more of these routine, seismic coughing fits, listening patiently and somewhat annoyed from another room, hoping he’ll work it out on his own. He almost never does.

She turns the BiPAP and the humidifier off, silencing the alarm, then pulls the mask up and over his head.

“I-ha-fa-pee.”

Of all the undignified ALS-related chores, she hates the morning pee the most. She swears he yawns or turns his head on purpose, breaking the seal on the mask, sounding the alarm so she’ll magically materialize before him. He then wants her to unhook him from the machine so he can get up and use the bathroom.

She shouldn’t resent him for having to pee in the morning, but she does. It’s always about 7:00 a.m. when he makes this request, shocking her out of a dead sleep. She begins almost every day exhausted, hollowed out and nauseated from lack of sleep. Granted she’s already up today, but normally, she’s out cold at seven. Bill comes at nine. Why can’t he just lie there and wait for Bill? She should be grateful that he doesn’t piss the bed.

He swings his legs over the side of the bed and worms his butt to the edge. Using his weakening core, he works to pull himself to standing. She watches him struggle and doesn’t offer a hand. She follows him out of the den, through the living room, and into the first-floor bathroom.

He stands in front of the toilet, waiting for her. She pulls his boxers down to his ankles, and he steps out. She picks his shorts up off the floor and rests them on the vanity, keeping them safely dry.

He stands over the bowl, thrusts his bony hips forward, and pees. She crosses her arms and grits her teeth, irritated with him for not sitting. Granted, sitting doesn’t guarantee that everything will land neatly in the toilet, but she feels the odds are better. What does he care if he misses? He’s not the one who has to clean up the mess.

She closes her eyes, an absurd and unnecessary offer of privacy, listening for him to finish. She can tell by the intermittent sound of trickling, of urine splashing into water and then nothing, that he’s peeing all over the floor. Just as she predicted. She’s sweating, stifling hot beneath her winter coat and hat, which she still hasn’t had time to remove. She wonders when she’s going to get her cup of coffee.

When he’s done, he presents himself to her. She squats in front of him, holding open each hole of his boxers for him to step into. She pulls them up.