Every Note Played

by Lisa Genova

  Karina switches tack. She stands behind his chair, wraps her arms around his middle, and starts rapidly pumping her fisted hands into the soft space below his sternum, between the bones of his rib cage. Over and over she thrusts her fists into his abdomen. The makowiec won’t budge. He tries and tries to help her, but he can’t cough with any real force. His head begins to tingle. Grace and the entire room blur. Karina’s saying his name, and he knows she’s right here, pounding on him harder and harder from behind his chair, but she sounds far away.

  Maybe this is how it ends. Maybe this is what happens next.

  CHAPTER SIXTEEN

  Karina uncaps the plastic MIC-KEY button that lies flush against Richard’s skin two or so inches above his belly button, attaches a small length of tubing, and begins pressing on a fifty-milliliter syringe plunger, delivering a total of 500 cc of Liquid Gold over the next half hour directly into his stomach, his fifth and final “meal” of the day. They watch a rerun of Friends on TV while they wait for the syringe to empty.

  The past three weeks have been all about tubes. After his nearly fatal choking episode on Christmas Eve, Karina took him to the ALS clinic. His neurologist, pulmonologist, radiologist, speech-language pathologist, and gastroenterologist listened to what had been going on and assessed his breathing and swallowing. Two major things were discovered. Two monumental decisions, both involving tubes, were made. The mother of all decisions, involving the mother of all tubes, still awaits a verdict.

  First, he had a swallowing study. He drank barium dissolved in a thin liquid and sputtered as he swallowed. He next consumed barium mixed in applesauce and had to swallow several times to clear the feeling of mush stuck to the side of his throat. He then suffered a violent coughing fit trying to eat the tiniest bite of a bariumsprinkled cookie. A radiologist and the speech-language pathologist studied the X-ray video and determined that his ability to reliably and safely swallow had become significantly compromised in the past three months. No kidding.

  The muscles of his tongue and palate have further atrophied, making them weak and lazy. Most dangerous, his epiglottis is slow to close off his larynx while swallowing, which means that food can be aspirated into his trachea and lungs. This is what likely happened with the makowiec on Christmas Eve. While liquid milk shakes won’t lodge in his windpipe like poppy-seed cake, they can drain down the wrong pipe and drip into his lungs, causing aspiration pneumonia. Anything that goes into his mouth now could easily kill him.

  Not yet ready to surrender to dying, he surrendered to a feeding tube. He had the surgery the day after Grace returned to school. The twenty-minute procedure was straightforward and routine for his surgeon. Dr. Fletcher fed an endoscope through Richard’s mouth, down his esophagus, and into his stomach. He then threaded a thin plastic tube through the scope and out a small hole incised in Richard’s abdominal wall.

  Karina waits a good ten minutes after the first 250 cc for his stomach to settle before delivering the rest. When given too rapidly, he gets too full too fast, nauseous, and vomits. Liquid Gold has a foul, acidic, nutty flavor on the way up that makes him cringe just thinking about it. That stuff was never meant to be tasted. Thankfully, Karina takes her time.

  When Friends is over and the final food syringe is emptied, Karina dissolves his evening meds in water and delivers that through the syringe as well. The water feels cool and refreshing and weirdly quenches his thirst without ever touching his lips. She then flushes the tubing two more times with water, recaps the MIC-KEY button, and lowers Richard’s lifted shirt. There. Done with dinner or his nightcap or his feeding or whatever this is called. His stomach is now filled with five hundred calories in a half liter of liquid. He can’t say that he’s hungry, but he’s hardly sated. Although the service was impeccable, he’d give the meal itself a one-star Yelp rating.

  He remembers when he first started touring, he ordered steak from room service every night. By maybe the eighth or ninth night, he couldn’t stomach even the thought of one more steak. He’d had his fill. He ordered pizza and didn’t touch another steak for months. The only item on the room-service menu now is Liquid Gold, every meal for twenty-three days straight and counting. What he wouldn’t give now for a medium-rare dry-aged New York strip.

  He tries not to think about food. For one, it’s torture to imagine what he can never again have. Second, like Pavlov’s dog anticipating the steak his master is about to plop in its dish after the bell is rung, remembering food makes Richard’s mouth water. While the PEG tube eliminates the potential threats of eating and drinking, he still has to contend with his own saliva, which, like any liquid, can go down the wrong pipe when swallowed.

  Even with the help of the glycopyrrolate, his drool, which has for some reason become the consistency of Elmer’s glue, is constantly accumulating, either spilling over his bottom lip and hanging from his chin in shimmering, stringy ribbons or gurgling at the back of his mouth. Thinking about steak turned the faucet on. He’s gurgling.

  Karina flips on his new suctioning machine, pokes the wand into his mouth, and slides it around in there, vacuuming between his teeth and gums and under his tongue, slurping up his excessive spit, drying out his flooding mouth. He feels like he’s at the dentist every time she does this.

  The second big discovery at his clinic appointment was the treacherous state of his breathing. His forced vital capacity, the amount of air he’s able to forcibly exhale, was down to 42 percent. Over the past three months, he’d started to notice that he was regularly out of breath when walking from room to room, that he had to pause every four or five words when talking because he was out of air, and that he was speaking only on the exhales.

  “Are you waking up throughout the night?” asked his doctor.

  “Yes.”

  “Are you starting the day already fatigued?”

  “Yes.”

  “And do you have a headache when you wake up?”

  He did, almost every morning for weeks.

  “You’re hypoventilated during the night. You’re not getting in enough oxygen, and you’re retaining too much carbon dioxide. I want you on a BiPAP.”

  He had no idea that his insomnia and morning headaches were due to a continual lack of air throughout the night. So now he sleeps with a mask attached to a machine by a long tube. It’s ten o’clock, and the only thing left on his exciting daily itinerary is getting hooked up to the BiPAP.

  Karina fills the humidifier and plugs it in. Richard watches her weary but focused eyes as she works. She applies Vaseline with her pinkie to the many raw sores on his face. The moist air and prolonged contact of the mask against his skin every night have caused it to break down, creating a painful rash. He tried switching to nasal pillows instead of a full-face mask, but he couldn’t keep his mouth closed while sleeping and found wearing the chinstrap to keep it shut too aggravating. So he wears the full mask and endures the sores. Karina wipes her hands on a towel, turns the BiPAP on, then secures the mask over his nose and mouth.

  The relief is instantaneous. Initiated by his own inhale, air is forced in. His lungs fully inflate, and his rib cage expands. When he exhales, the machine inverts the pressure, and air is forced out as if his lungs were a pair of bellows and the machine were pressing the handles together. Every night, in this moment when Karina seals the mask onto his face, he realizes exactly how labored and shallow his breathing has been all day, as if he’s been wearing a tight corset around his lungs since morning and Karina finally released it. With the mask on his face, he breathes an abundant flow of sweet oxygen in and carbon dioxide out, and a deep tension lifts out of his body like steam rising off a hot cake. He won’t suffocate in the night.

  His pulmonologist says that his forced vital capacity appears to be declining at about 3 percent per month. The BiPAP is only capable of producing pressure that supports breathing. It doesn’t breathe for him. It breathes with him. At some point, the BiPAP will no longer sustain him. The only options then will be death or a trache
ostomy tube coupled with mechanical ventilation and 24-7 care. Like the medium-rare dry-aged New York strip, he tries not to think about it.

  While the introduction of the BiPAP has meant a better night’s sleep for Richard, it has meant the opposite for Karina. She adjusts the mask, making sure it’s entirely sealed, knowing without question that, like all things, the seal is temporary. When he yawns, when he scrunches up his nose because it itches, when he turns his head to the right, the mask can come loose. If it does, the machine will then sound an alarm, and Karina will have to get up to readjust the mask. Several times a night. She sleeps on the couch in the living room now to shorten her commute.

  He’s like a newborn, and Karina is the sleep-deprived new mother, a walking zombie. But with newborns, there is light at the end of the tunnel. The baby starts eating solid food or gains weight or turns one—some developmental milestone is achieved and miraculously the baby sleeps through the blessed night. There is no light at the end of this tunnel, no developmental milestone that will graduate Richard from needing assistance all hours of the night. Unless they consider his death a milestone. Maybe Karina does.

  He watches her face, her pretty green eyes. She’s inspecting the perimeter of his mask, but because the mask is over the midline of his face, it looks as if she were studying him. Her eyes appear dull, disconnected from the source of any internal spark. Her long hair is gathered into a low ponytail, but a section from the front has fallen loose, draping over her right eyebrow. He wants to reach out and tuck it behind her ear.

  She looks him in the eye and sighs. He wants to tell her that he’s sorry that she’s so tired. He’s sorry that he has this and had nowhere else to go. He’s sorry he’s become such a burden to her. And then suddenly, strangely, for the first time, he wants to tell her that he’s sorry for all of it.

  And he’s sorry without the usual accessories, the excuses that absolve him or an equivalent list of her crimes weighing down the other side of the scale, blaming her, making them even. There is only his apology. He’s sorry he was so careless with her, their family, their life. He’s sorry that he cheated on her, that he didn’t know what to do with his loneliness, that he felt unappreciated, unseen, unloved by her and didn’t know how to talk to her about it. He was lonelier in bed with Karina than anywhere else on the planet. He never told her. He remembers those green eyes looking straight at him, simmering with resentment, punishing him, looking straight through him, indifferent, shunning him. He was too afraid to ask her what was wrong, too afraid to hear her answer. They never talked about any of it. They were complicit in their mutual silence.

  Her exhausted eyes, likely praying that the mask stays put for at least a couple of hours, connect with his. He wants to tell her now that he’s sorry, before she leaves the room, before this revelation and urge to confess evaporate, before he goes to sleep and, as if it were a dream in the nighttime, he awakens in the morning with only the vaguest sense of having known something. He holds his apology like a helium balloon, the slipknotted string fast loosening from his wrist, soon to be a dot in the stratosphere. He has to say it now or possibly never.

  “I’m sorry.”

  But his voice, already thin and weak like the rest of him, can’t be heard through the mask, over the vacuum-cleaner-like whir of the BiPAP.

  “Good night,” she says.

  Karina turns off the TV and the light, leaving the door open a crack as she disappears from his room without ever hearing him, not knowing.

  CHAPTER SEVENTEEN

  Finished with his morning shift, Bill walks into the sunlit but chilly living room, leaving the door to the den wide-open. Cuddled under a blanket on the couch and draining the last still-hot sip of her second cup of coffee, Karina is distracted by this, bothered even, as if she’d witnessed someone leave a bed unmade or the cap off a tube of toothpaste, nagging her like an aggressive itch she can’t yet scratch. She doesn’t keep the den door wide-open. She can’t shut it entirely as she would prefer, as Richard would be trapped inside, but there needs to be some physical, visible barrier between them. She keeps the den door positioned open only a crack, creating at least a semblance of separation and privacy. She feels safer that way. Not wanting to reveal this probably diagnosable compulsion to Bill, she’ll close the den door to an inch shy of shut after he goes. Then she’ll finally take a shower.

  Karina anticipates their daily good-bye as Bill checks a text on his phone. Done, he looks up at her, but instead of offering his usual cheery hug and a kiss on the cheek, he stands there with his arms crossed, studying Karina as if she were a math problem he can’t quite figure out or a piece of art that sort of offends him but he’s not sure why.

  “Okay, girlfriend, my one-thirty just canceled. Kensia will be here with Richard then. You’re meeting me for coffee.”

  “I can put on a pot here if you want some coffee.”

  “No. You’re getting out of this house, and we need to chat.”

  “About what?”

  “About you,” he says, assertive and concerned.

  “Me?” She’s suddenly self-conscious about her bedhead and sweatpants, that she’s not wearing a bra under her T-shirt or any makeup, and that she doesn’t smell so good. “I’m fine.”

  “You are so not fine. Ryan Gosling in The Notebook is fine. You’re Mickey Rourke in The Wrestler.”

  Mortified, she wants to pull the blanket she’s wrapped in up and over her head.

  “I’m just tellin’ it like I see it.”

  “I haven’t showered yet,” she confesses, as if this weren’t obvious. “And I’ve already had two cups of coffee and can’t have any more caffeine or I won’t sleep at all tonight.”

  “You can order decaf.”

  “Honestly, I’m okay, Bill.”

  “Decaf coffee at one thirty, or we’re going for martinis after I get off work tonight at six thirty. And don’t throw any more excuses at me ’cause I have a really big bat, and I’ll just keep hitting ’em back at ya.”

  “I’m good.”

  “You’re bad.”

  “I can’t leave at six thirty. Kevin’s only here until six.”

  Bill squints at her through his black-rimmed glasses as if he were contemplating his next move in a game of chess. “You’re driving me nuts.” He checks his phone again. “Okay, my next visit lives nearby, so let’s do this now. Come.”

  He marches into the kitchen, a man on a mission, and not knowing what else to do, Karina follows him. They sit opposite each other at the square breakfast table. He looks into her eyes and says nothing, taking her in, and she feels so utterly exposed and yet safely held in his gaze that she finds herself working hard not to cry.

  “Okay, honey, tell me what is going on. I need to know more about this situation.”

  “What do you mean?”

  “I mean about the two of you. Not for nothing, but the tension in this house is killing me.”

  Karina sits back in her chair, blinking, stunned. She thought she’d been nothing but perfectly civil, polite, and dutiful around Richard, especially in front of Bill, whom she adores and admires and wants to impress. She can feel the razor-sharp point of every edge between Richard and her, but she assumed their animosity was traveling on a private, restricted highway. She didn’t think Bill or anyone else visiting or tending to Richard could possibly pick up on it.

  “Really?”

  “You both do anything to avoid making eye contact with each other. Seriously, if you’re in the same room, your eyes dart around so much I practically have to sit down I’m so dizzy.”

  “Well, you know we’re divorced,” she says in a hushed voice, not wanting Richard to hear her through the wide-open den door, wondering what details he’s already shared with Bill.

  “Are you ever going to talk about your whole history?”

  “To you?”

  “To Richard.”

  She pauses. She didn’t see that coming. She picks at a flake of skin on her chapped bottom lip wi
th her thumb, smelling her coffee breath on her hand as she does. The skin peels too far without letting go, and a quick pinch stops her from continuing. She licks her lip, tasting blood.

  Bill waits, watching her.

  “Part of the reason we’re divorced is because we don’t know how to talk to each other.”

  “Look, I don’t walk in your shoes, but I see what I see, and I’ve been through a lot. I’ve lost people close to me, and in the end, it’s all about peace of mind and closure. You’ve gotta get to forgiveness.”

  She has taken Richard in. She pulls down his underpants so he can pee, she wipes his urine off the toilet seat and the floor when he’s done, she suctions mucus out of his mouth all day, she reseals that damn mask onto his face all night, she pushes liquid food and water through a syringe into his stomach, she makes sure the den door is cracked open instead of shut so he can come and go. And a thousand other things. Now she’s supposed to forgive him, too? She wants to do the right thing, and she wants to please Bill, but she’s maxed out. Totally tapped.

  “I can’t do any more than what I’m already doing for Richard.” She crosses her arms over her chest.

  “Sweetheart, forgiving Richard is for you. Not for him.”

  She softens her stance, surprised to be considering this perspective. Forgiving Richard would be for me Could that really be true? She tries it on, but instead of feeling true like the sky is blue, it feels more like the sky is infinite space extending through more than one hundred billion galaxies. It could be true, but she can’t comprehend it.

  “I don’t know if you’ve fully grasped this, but he’s probably not going to live to be ninety.”

  “I know.”

  “I wouldn’t wait too long then. You might just miss your chance.”

  Bill looks her straight in the eye, making sure his words landed, and her heart beats faster as if it’s been warned or dared or threatened. She nods but has no idea yet what she’s agreeing to.