“How we doing?” asks Dr. Connors.
Richard’s trachea feels bruised, dry, and brutalized. His lips are painfully chapped. He’s fixated on an obsessive desire to clear his throat and struggling to ignore an intense itch on the top of his head that seems intent on burrowing into his brain. And if things go sideways, he’s going to die today.
“Are we waiting on anyone else?” asks Kathy.
Everyone looks to Richard. He doesn’t blink.
“No,” says Karina.
“Yes,” says Ginny. “I’ve called for a music therapist.”
“A what?” asks Karina.
“Someone to come and play guitar, something relaxing to keep Richard calm.”
Richard raises his eyebrows in alarm, hoping Karina sees him.
“God no,” says Karina. “No. Call him off.”
“Are you sure?” asks Ginny.
“Positive. He’d detest that.”
Richard blinks several times.
“I’ll play something from my iPhone.” Karina looks to Richard. “Mozart?”
He thinks. No. Keep going.
“Bach?”
He stares, unblinking.
“Schumann?”
He blinks.
“Okay.”
She doesn’t ask him which piece. He trusts that she knows. He watches her search. Then the music begins.
Of course, she knew. It’s Schumann’s Fantasie in C Major, op. 17, his greatest masterpiece, and Richard’s favorite piece to play. He listens to the first few measures of the first movement and wonders.
“Yes, this is you, playing at Carnegie Hall,” says Karina.
His mouth is immobilized, but his eyes are smiling. He blinks.
The serious business of what awaits them pauses as everyone listens. The first movement of this fantasy is dense and dreamy, a passionate lamentation, Schumann expressing his longing for his beloved Clara, separated from him by her father. Richard locks his eyes with Karina’s as they listen, knowing she knows the meaning behind the composition, and his heart aches for her to know how grateful he is to her and how sorry he is. Even if he didn’t have a tube in his throat, even if he weren’t too tired and scared to use the letter board, even if it weren’t too late and he could speak, he’s not sure he could find the words big and true enough to heal what he’s done to her.
He keeps his eyes with hers alone, willing the notes to speak for him, and he’s swaddled in her gaze. Tears spill down his face. Karina squeezes his hand and nods.
The second movement changes mood abruptly. It’s a majestic march, powerful, extroverted, bombastic, fast, and extremely difficult to play. Richard’s professional career passes through his consciousness. Curtis, New England Conservatory, the prestigious concert halls and symphonies, the world-renowned conductors, the orchestras, the festivals, the solo recitals, the audiences, the standing ovations, the press and accolades. It was a beautiful life. It all went by so fast.
Dr. Connors checks Richard’s vitals and explains what he’s about to do.
“Are you ready?”
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 s
orry 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.
EPILOGUE
Karina’s standing in the den, an empty cardboard box in her hands. It’s been eight days since Richard died. She’s been avoiding this room.
Bill brought boxes for Richard’s clothes. She’s donating them to Goodwill. She stands without moving, observing all the equipment that was part of her every day for months, now abandoned, historical relics. The hospital bed, the wheelchair, the Hoyer lift, the suction machine, the cough-assist machine, the BiPAP, the piss bottle, the pivot disc. She’s offering those and anything she might be forgetting to Caring Health.
She places the box on the floor but doesn’t know where to begin. The room feels strange without Richard in it. She supposes it will go back to being the den after she clears everything out, but she can’t imagine that. He lived in this room for only four months, but it no longer feels like her den. Richard had ALS in this room. She looks at his empty bed, the wheelchair, his desk chair, and feels his energetic impression everywhere, this room still thick with intense memories of Richard and his ALS. Her eyes well, and she rubs the goose bumps on her arms. Or he’s decided to haunt her.
She sits down at his desk and swivels in the chair. Maybe Grace will want his computer. She went back to school yesterday. She seems to be doing okay. It’s good she has classes and her friends and a demanding schedule to give her life structure, to keep her moving forward.
The house is quiet again. No more whirring of the BiPAP, no alarms sounding when the mask goes askew, no more coughing, gagging, choking. Those sounds are done and gone. Richard is gone.
What will she do now? She feels the familiar void, like something heavy and queasy sinking in her stomach, as if she’s eaten something gone bad. Should she resume her piano lessons? Or should she pack up the entire house and move to New York? Her heart races, nervous at the daring thought of it. She swivels in her chair, not settling on an answer.
Maybe packing up Richard’s clothes is enough for right now. She sighs and doesn’t move off the chair. Instead, she checks her email on her phone. At the top of her inbox is an email from Dr. George. She opens it.
Dear Karina,
I’m so sorry about Richard. I enjoyed getting to know him, if only briefly. I know you said he decided on using a computer-synthesized voice when the time came instead of banking his own. Well, I double-checked the recorder I lent you before wiping it and giving it to another patient, and there was a single legacy message on it that you’ll want. I’ve attached it for you here.
Be well,
Dr. George
She hesitates, then taps on the attached MP3 file.
“Hi, Ka-ri-na. I-like-tha Doc-to-Geor calls-thi-sa le-ga-cy me-ssa. I-been-thi-king a-lot a-bou wha-my le-ga-cy will-be. Will-i-be-my pi-a-no ca-reer? Or-Grace? Tha-sa-be-tter one.
“May-be-iss this. Wha-I-have to-say to-you.
“Ka-ri-na. I’m-sor-ry. I’m-sor-ry I-chea-ted o-nyou. I’m-sor-ry I’m-the-rea-son you-sto-pla-ying jazz. I-was-a te-rri-ble hus-ba to-you. You de-ser be-tter.
“If-I-ha-da wish fo-my-le-ga-cy, ih-wou-be this. You-are-so ta-len-ted. You-are-sti-young. You-are-hea-thy. You-have e-ve-ry-thing you-nee.
“Go-to New-York. Play-jazz. Live-your-life. Be-ha-ppy.”
She sits still in the chair, amazed to be hearing Richard’s voice again, stunned by his message, these words she’s always wanted, needed. She plays it again, and the sick feeling in her stomach dissipates. Her heart is pounding, awake, excited. She plays it again, and his words release the last of her grip on twenty years of blame and resentment, of being right at any cost. The cost has been astronomical.
A plan for her future forms as she listens, determined thoughts that sound pitch-perfect in her mind’s ear, a composition of notes she’s been wanting to play her whole life. She’s going to pack up this room, and then she’s going to need more boxes. But first, she plays his message again, grateful to hear the sound of his voice, forgiving him, feeling his presence in this room and in his words, knowing she, too, is forgiven, free.
LISA’S CALL TO ACTION
Dear Reader,
Thank you for reading Every Note Played. Maybe prior to reading this book you read Tuesdays with Morrie, watched The Theory of Everything, or dumped a bucket of ice water over your head. You probably had some awareness of ALS. I hope you now have a deeper understanding of what it feels like to live with this disease.
I also hope you’ll join me in putting that empathy into action. By making a donation to ALS care and research, you can be part of the progress that will lead to treatments and a cure and help provide proper care to the people who desperately need it now.
Please take a moment, go to www.LisaGenova.com, and click on the “Readers in Action: ALS” button to make a donation to ALS ONE, an extraordinary organization determined to deliver a treatment or cure for ALS and dedicated to offering improved care now. For more information on ALS ONE, go to www.ALSONE.org.
Thank you for taking the time to get involved, for turning your compassionate awareness into action. Let’s see how amazingly generous and powerful this readership can be!
With love,
Li
sa Genova
ACKNOWLEDGMENTS
This book began with Richard Glatzer, who, along with his husband, Wash Westmoreland, wrote and directed the film Still Alice. Richard had bulbar ALS, which means that his symptoms began in the muscles of his head and neck. I never heard the sound of Richard’s voice. He brilliantly codirected Still Alice by typing with one finger on an iPad.
Richard, I am forever grateful to you for all you gave to the creation of the film Still Alice, for sharing with me what it feels like to live with ALS, for showing us all what grace and courage look like, for not giving up on your dreams. Richard died on March 10, 2015, shortly after Julianne Moore won the Oscar for Best Actress for her role in the film.
I met Kevin Gosnell, his wife, Kathy, and his sons, Jake and Joey (and later Scott), shortly after Kevin was diagnosed with ALS. Within minutes of knowing him, I knew three things:
1. Before ALS takes him, Kevin is going to change the world.
2. He’s also going to change me.
3. I love this man and his family.
Right after Kevin’s devastating diagnosis, he framed his terrifying situation in the most selfless way I can imagine. He thought, “How can what I’m about to go through serve others?” He then gathered the best people in medicine, science, and care and formed ALS ONE, an extraordinary collaboration determined to discover a treatment or cure for ALS while promising the best possible care to people living with ALS now. I invite you all to learn more about Kevin’s important legacy at ALSONE.org and get involved. Kevin passed away on August 8, 2016.
Thank you, Kevin, for inviting me into your home, for sharing your life and family with me. I owe so much of my understanding of ALS to you. But beyond that, you were simply one of the best human beings I’ve ever known—your generosity and grace; your loving leadership; your unwavering sense of purpose, of contribution to the world beyond yourself; the life lessons you gave to your boys, which I now give to my children; the enormous love you shared with your family and everyone who came into your life. I always felt like part of your family in your home. I love and miss you. I hope I’ve made you proud.