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.
“Can-a-pu-on-my Hea-Mus?”
“Give me a minute. I have to clean up this mess.”
He leaves her—his ex-wife; his dutiful, unpaid, unthanked nursemaid—to the job of wiping up his piss. She unzips and removes her coat and hat, sprays disinfecting cleaner all over the toilet seat and floor, and wipes everything dry with a wad of paper towels. There. Clean until the next time he pees.
While washing her hands in the sink longer than necessary, she studies her face in the mirror. Her mouth is turned down at the corners, a resting frown. Her skin and eyes are dull. Her hair is flat and oily. She hasn’t bothered washing it in days. She needs a long, hot shower. She needs a good, long nap. She needs breakfast and a cup of coffee. But instead, she has to return to Richard’s room to stick a silver Head Mouse dot to the tip of his nose. It will take two seconds. But he gets to go first, and she hates him for it.
Back in the den, he’s sitting at the desk in front of his laptop, waiting for her. She peels a dot from the sticker strip and presses it onto the tip of his big nose. He begins typing, selecting letters one at a time by aiming his nose at the keyboard displayed on the screen. As usual, Bill will get him showered and dressed when he arrives at nine. While she’s in there, she opens the shades and strips the bed. With an armful of bedding, she’s on her way to the laundry room when her eyes unintentionally catch the words Dear Dad at the top of his computer screen.
“You’re writing to your father?”
“Ya-na-su-po-sta see-tha. Don-rea-dova-my-shoul.”
“I’m not. Are you asking him for help?”
“No.”
“Why not?”
“Why-do-we nee-hel?”
She stares at the back of his head, incredulous. She’s pretty sure her frowning mouth is hanging open. Maybe she misheard him. Did he really just ask, Why do we need help?
“Bill-an-tha-otha-aides do-mo-satha hea-vy-lif-ting. You-do-wun meal-a-day but-o-tha-than-that I-mo-sly-stay ou-ta-ya-hair.”
She squeezes the sheets in her fists. She wants to pull every strand of hair out of his ungrateful head. Who does he think just wiped up his piss? Who will interrupt every piano lesson this afternoon to suck his mouth dry so the students don’t have to listen to him sputter and gag between notes and worry that he’s dying in the next room? Who is up all hours of the night adjusting his mask so he can breathe? Who does he think washes his bedding and clothes and takes him to his doctor’s appointments? But, otherwise, yeah, he mostly stays out of her hair.
“I’m exhausted.”
“Yuh-firs-les-son is-no-un-til afa-noon. Why-don-you go-ba-to bed?”
“Why don’t you go to hell?”
She drops the pile of bedding on the floor, marches out of the room, and shuts the door behind her. She doesn’t want to see him. He can stay in there until Bill arrives.
Standing in the living room, shaking with fury, she’s unable to decide what to do. She’s too angry to enjoy breakfast and a cup of coffee, too incensed to take a nap, and Grace is still in the shower. Karina stands there, paralyzed in her rage, and wonders what would happen if she stopped helping him. What would happen if the next time he chokes, she doesn’t stop her piano lesson midnote to suction him? At some point, the BiPAP won’t simply be used for the quality of Richard’s sleep. He’ll need it all day and night for adequate ventilation. What happens when they reach that point in one month, in two months, this summer, and his mask comes loose in the night, and she ignores the sound of the BiPAP alarm? What if she awakens the next morning, refreshed from a full night’s sleep, to find Richard with his mask askew, asphyxiated in the den?
She stands in the living room, exhausted, unappreciated, unshowered, and hungry, wondering if she’d be charged with murder if he dies on her watch.