Every Note Played(70)
Richard looks to Grace. Bill notices and extends an arm, inviting her closer, inside their circle. She edges next to her mother.
“I’m here, Dad.” Grace looks terrified. “I love you.”
Richard blinks, loving her back. He prays this isn’t the last time he hears her say those words.
Dr. Connors positions himself over Richard’s face and peels back the tape.
“Okay, on three. One, two, three.”
Dr. Connors yanks hard on the end of the tube, and it slides up from inside Richard for a surprising length, a procedure as brutishly physical and indelicate as the tube’s insertion. The tube is out, and everyone looks at Richard, waiting. No one, including Richard, is breathing.
He’s playing the third movement now. The melody is solemn, a reconciliation. The BiPAP mask is placed over his face, and still there is no air. The ventilator is quiet. There is no sound but for Richard playing Schumann. His head begins to tingle as the room narrows. He stays focused on Grace and Karina and Bill and the music, and suddenly there are no boundaries between the vibrations of the notes and the people in this room. He doesn’t want to leave them. He wants to keep listening, vibrating, breathing, being.
He wants a few more notes. Another movement. Just a bit longer. He doesn’t want to die in the ICU.
His lungs call out to his diaphragm and the muscles of his abdomen, searching, pleading. He plays the final notes of Schumann’s Fantasie, slower, softer, hopeful, a whispered prayer to God. Everyone in the room and Richard’s lungs wait in stillness for an answer.
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.