CHAPTER THIRTY-THREE
They’ve been home for three days now. With Richard’s consent, Ginny weaned him off the BiPAP two days ago. His breathing is extremely shallow, but he’s still going. Despite the shortness of his breath, he doesn’t seem to be agitated or struggling. Ginny has him on regularly scheduled doses of morphine for any discomfort and Ativan for anxiety. He’s sedated, in and out of consciousness, sleeping most of the time. Karina knows it’s not right to think this way, but she keeps wondering how long he can go on.
When they arrived safely home, she and Bill rolled Richard’s hospital bed into the living room so he could be next to his piano. Grace is camped on the couch with her bedding and pillow, still in her pajamas at dinnertime, typing a paper for school on her laptop. She’s been sleeping on the couch, watching over her father day and night, waiting for the end. They’re all waiting.
The house is eerily quiet. They haven’t turned on the TV. Karina canceled her piano lessons for the week. She hasn’t left the house in three days. They’re existing outside of time, cocooned in the living room, unaware of world events, ears tuned in to the faint, intermittent sound of Richard still breathing.
It’s not that Karina’s needed at home. There’s not much to do now. She’s got cabin fever and would love to go for a morning walk with Elise, but she can’t risk leaving the house. He might not even be conscious when it happens, but she feels she should be here. She owes that much to him. To both of them, maybe.
Ginny comes for a couple of hours each day to oversee things, to monitor Richard and administer his meds while she’s here. She just left a few minutes ago. Bill comes in the evenings. He tends to Richard’s body and keeps Karina company. He should be here in a couple of hours.
She checks the time. She’d normally feed Richard now. Instead, she delivers a syringe of water through Richard’s PEG tube, then caps the MIC-KEY button. Two days ago, Richard was awake when Ginny was here. She asked him if he wanted to discontinue nutrition. He blinked. She asked him if he wanted to discontinue the BiPAP. He blinked.
He has pneumonia and is no longer being treated for it. His 110-pound, paralyzed body is pumped full of morphine and Ativan. He hasn’t eaten in two days. Yet, part of him is still holding on.
“I’m going to take a shower,” says Grace.
“Okay, honey.”
Karina sits in the wing chair positioned next to Richard’s bed. She studies his face while he sleeps. His cheeks are sunken beneath his speckled beard. No one has shaved him since he was rushed to the hospital six days ago. His lips are cracked and scabbed. His hair and eyelashes are black and beautiful.
He exhales. She waits and waits. She wonders and leans in. He inhales. How does he still have the strength to keep breathing?
She puts her hand on top of his. His hand is bony and cold, unresponsive to her touch, the skin mottled, pooling with blood. This disease is hideous. No one should have to go through this.
“I’m so sorry, Richard. I’m so sorry.” She starts crying. “I’m so sorry.”
At first, her apology is purely about the unfairness and horror of having ALS, but as she keeps crying and repeating herself, the meaning of her apology changes. She moves to the edge of the wing chair and lowers her head closer to his ear.
“I’m sorry, Richard. I’m sorry I denied you the family you wanted. I’m sorry I deceived you. I should’ve had the courage to tell you the truth. I should’ve set you free to live the life you wanted with someone else. I’m sorry I stopped being the woman you fell in love with. I pushed you away. I know I did. I’m sorry.”
She watches his face as she thinks, searching the darkened hallways of their history for any more boxed-up, unspoken words. She finds none. Her tears subside. She pulls a tissue from the box on the side table, wipes her eyes, and blows her nose. She takes a deep breath and sighs, and the unexpected noise that leaves her is low and anguished, a howl. She inhales again and feels twenty years lighter.
“We did the best we could, right?”
She waits, listening to him breathe. She returns her hand to his and scans his face for any sign of responsiveness. She can’t know if he’s asleep or knocked unconscious on high doses of Ativan or in a coma. He doesn’t open his eyes. She searches for even an incidental, involuntary twitch in a facial muscle that she can interpret. He’s still. He can’t squeeze her hand. She can’t know if he heard her.
“I wish I’d done better.”
“Everything okay?” asks Grace.
Karina turns around. Grace is standing at the bottom of the stairs in a maroon University of Chicago sweatshirt, black leggings, and slippers, wet hair pulled up in a ponytail. Karina can’t tell by her posture or expression if Grace heard any of Karina’s confessions or crying.
“Everything’s the same. You hungry?”
“No.”
As if in solidarity with her father, Grace hasn’t eaten anything since yesterday. Grace settles herself back on the couch. The day is fast turning to night, and darkness invades the living room. Grace’s face is illuminated by her laptop screen like a flashlight. Karina stands, intending to turn on a lamp, but, once up, walks over to the piano instead.
She sits down and places her fingers on the keys. Without thinking, she begins playing Chopin’s Nocturne in E-flat Major, op. 9, no. 2. The melody is gentle, relatively easy, and delicious to play, like comfort food. She loves the freedom the piece gives her with the tempo, the glassy trills, the decorative tones. The melody evokes sense memories of her mother’s pierogi, a gentle rain outside her dorm window at Curtis, dancing a waltz with Richard in New York. The piece builds, its crescendo a passionate embrace, then tumbles into trickling water, thrown confetti, a return home, safe, held.
She plays the final tender note, and the sound floats throughout the room before disappearing, a sweet memory. She turns around and is surprised to see Grace up from the couch, sitting in the wing chair. Her eyes are glossy, wet with tears. At first, Karina assumes Grace was moved by Chopin’s nocturne. But then Karina listens.
She keeps listening. She waits and holds her breath, straining to hear an inhale. The room remains quiet. She waits past the point of knowing, to be sure.
He’s gone.