by Lisa Genova
“I gotta run. But also, honey, please. You gotta take care of yourself. I’ve seen too many caregivers burn out. You gotta get out of this house and have time that’s just for you.”
“I walk with Elise every week.”
“That’s not enough. What about meeting someone?”
“Like a man?”
“Yes, a man. Or a woman if you’re into it. Whichever. A date.”
“No.” She shakes her head for emphasis, dismissing the suggestion.
“Look at you. You’re beautiful. Or, you would be after a long shower and some makeup and maybe a trip to the mall.”
“The last thing I need is another man to take care of, thank you.”
“I’m not telling you to marry him, for God’s sake. I’m talking someone to wine and dine you. And getting laid wouldn’t hurt either, girl. I’m just sayin’. You know I love you.”
“Thanks. I just . . . I’m good.”
“Okay.” Bill stands, not believing her, but satisfied enough for now, needing to go. “But find something outside of this that’s just for you. ALS is going to take Richard down. Don’t let it take you, too.”
He kisses the top of her head and leaves the kitchen. She stays in her seat, listening to the squeaky sound of his rubber-soled footsteps on the hardwood floor of the living room and then the front foyer, the rising chord progression of his coat zipper, the questioning intonation of the front door as it creaks open, and the satisfying thump of it closing all the way shut.
CHAPTER EIGHTEEN
Karina and Elise walk together every week, regardless of the weather. Neither snow nor rain nor heat nor gloom of early dawn keeps them from completing their three-mile loop. It’s an admirable policy in theory, but questionable on mornings such as this when the temperature, with the windchill, is below zero. They leave the paved roads of their neighborhood for the dirt path that encircles the reservoir, walking much faster than they normally do. The sharp, frigid air stings Karina’s cheeks and seems to penetrate her brain through her exposed eyeballs, every blink a temporary shield, a noticeable moment of relief. She wishes she’d remembered her sunglasses. The normally soft pine-needle-strewn dirt path has no give, feeling petrified beneath her feet, the earth frozen solid. Frequent bursts of wind slice her body and steal her breath. It’s too cold to be out here. It’s almost too cold to talk.
“She definitely needs more help,” says Grace, walking fast behind Elise’s heels as if pursuing her.
Grace arrived home yesterday for a long weekend. Before bed, Karina invited Grace to join her and Elise in the morning but didn’t pin any hopes and dreams on Grace’s actually coming. A night owl who hates the cold and hasn’t seen 6:00 a.m. since elementary school, Grace didn’t verbalize any interest, and Karina took her nonanswer to mean Thanks, but no thanks. So Karina was more than a little surprised, and happy, to see her daughter dressed and waiting at the front door when Karina was ready to leave.
It’s been a month since Grace was last home. It feels like a year. In December, Karina came and went without too much thought regarding Richard’s safety. He could always reach her on her cell. But his voice has significantly weakened since Christmas, and the voice-activation app on his phone can’t reliably comprehend his muted, slurred speech. His whole life has changed in one month. He needs Karina’s help regularly, throughout the day and night, and so her whole life has changed, too. She worries about leaving him alone, but she’s not giving up her weekly walk. He’ll be fine.
“What about his father and brothers?” asks Elise.
“They’re not going to take him in,” says Karina.
“How do you know if you don’t ask?”
“Believe me, I know.”
“They can at least give you some money for more help.”
“I can do it.”
Richard has thirty hours a week of home health aides, not covered by insurance. The rest is on Karina.
“But why do you want to?”
“Yeah, Mom, what are you trying to prove?”
Karina’s not sure. Maybe having Richard in the house gives her something useful to do, something that fills the many hours every day when she’s not teaching children to play piano. When Grace moved to Chicago, an enormous, lonely void moved into Karina’s home and heart. No amount of therapy, chocolate, wine, sleep, or Netflix could evict it. Richard in the den with ALS has elbowed out some of the void, which is admittedly strange, as his presence had never before been the cure for her loneliness. Are these really her only two options—live with Richard or live with the void?
She must be a saint. Or a martyr. Or screwed up.
“It’s not forever.”
“That’s what Jane Wilde thought.”
“Who?” asks Grace.
“Stephen Hawking’s first wife,” says Elise. “They were in their twenties when he was diagnosed, and she married him anyway, thinking he had only a couple of years left. He’s in his seventies now.”
“So Dad could live that long?”
“If for some reason the disease stops progressing,” says Karina, not believing this is possible in Richard’s case, given the decline he’s experienced in the past month. “Or if he gets a trach and goes on a ventilator.”
“You can’t do this indefinitely, Karina.”
“I know. If he goes on a ventilator, he needs to move to a facility.”
She’s not a nurse. And she’s not his wife.
“He’d probably qualify for some kind of assisted living now,” says Elise.
“I’m okay for now.”
“I don’t get it,” says Grace. “You couldn’t stand living with him. You said the day he moved out was the happiest day of your life.”
Karina bristles. She shouldn’t have said such a thing within ear’s distance of Grace. Karina’s hoping she didn’t lack all judgment and say this directly to Grace. She might’ve. She doesn’t ask.
“Let me look after him for a few hours here and there. How about Tuesday and Wednesday evenings?” asks Elise.
“No. I couldn’t ask you to do that.”
“You’re not asking. I am.”
“No, really, I’m okay.”
“I could at least come over and keep you company.”
Reluctantly, Karina acquiesces. “Okay.”
Elise puts an arm around Karina and hugs her as they walk.
“I’m worried about leaving you alone with Dad.”
“I’m not alone. Elise is coming over Tuesday and Wednesday evenings. Don’t worry, honey. I have plenty of help.”
“You don’t. And this is only going to get harder. You realize this, right?”
Karina does, but she doesn’t answer Grace or acknowledge her with a nod. Karina keeps walking, her frozen eyeballs focused on the ground. One step at a time.
“Maybe I should stay home and take this semester off.”
“No, you’re not doing that,” says Karina.
“What if I figured out a way to do the next semester at BU or Northeastern?”
“No. We’re not discussing this. Your father would never want you to do that for him.”
“I’d be doing it for you, not him.”
As much as Karina would love for Grace to stay, to help with Richard and fill the void, she won’t risk Grace’s future. Karina knows all too well that a life derailed, even for a short time, can’t always find its way back to its original track. She never even made it back to the station. No, she won’t let Grace pause her studies, her relationship with Matt, her pursuit of happiness for a semester. For one second. Especially not for Richard. She won’t let Grace make the same mistake she made. That pattern ends with her.
Restless ghosts of unresolved resentment rise to the surface, as full and fresh and haunting as they were twenty years ago, ten years ago, last week. Karina lets the aching pain run through her, the tragic story of how Richard ruined her life, welcoming it for its familiarity, for the way it makes her feel justified.
“You’re not disr
upting your life out there.”
“You’re disrupting yours,” says Grace.
“That’s different.”
“She has a point,” says Elise. “You’re not exactly moving on if Richard is living in the den. Can you see your mom bringing a date home? This is the living room, and that’s my ex-husband in the den.”
“Richard isn’t keeping me from dating. I’m not interested in dating.”
“What are you interested in then?” asks Elise.
Getting warm. Ending this conversation.
“How about coming with me and my students on the New Orleans trip?”
“I can’t this year.”
“Why?”
Her ex-husband in the den.
“I think you like having Richard around to blame for things. It’s like a comfortable habit.”
Karina hates to admit it, but there is truth to this. If she blames him, she never has to blame herself.
“You can hire help for a few days, someone to stay the nights,” says Elise.
“I can’t.”
“You won’t.”
“Fine. I won’t.”
“Why?”
Karina doesn’t answer because she doesn’t know. Or maybe she’s beginning to but can’t yet articulate it. She senses something like a program running in the background, an awareness creeping up the basement stairs of her subconscious.
Maybe this horrible, bizarre living situation is giving her and Richard a chance at resolution, at forgiveness. She considers this possibility, first suggested by Bill last week, as the three walk in silence, Elise and Grace waiting patiently for an answer. Karina would like to forgive Richard for uprooting them to Boston; for missing most of Grace’s childhood; for cheating on her, betraying and humiliating her, robbing her of happiness. She’s tried many times over the years. After giving it much thought, she believes Bill, that forgiving Richard would be good for her. What’s the saying? Not forgiving someone is like drinking poison and expecting the other person to die. But she hasn’t been big enough or spiritually evolved enough or brave enough to do it. Richard is sick and dying, and she still can’t let him off the hook. Making him wrong allows her to feel right, and feeling right is her drug of choice.
And she’d like to be forgiven. But she can’t bring herself to apologize to Richard, to say the words. She’s handcuffed by shame and a stubborn, self-righteous logic that supports her side of the story. She had her reasons. Maybe her actions now can be the words she’s still too afraid to offer.
“I don’t know,” says Karina.
“I could come back for that,” says Grace. “Go to New Orleans.”
“No, you don’t need to.”
“How many days is it?” asks Grace.
“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.
“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.”