His heart swells, overwhelmed, and as she hums Madonna, he remembers the first time he heard Karina’s voice, her Polish accent, how desperate he felt to hear her speak to him, his delight when she finally did. He stares at her green eyes, her amused mouth, and hopes she catches him looking at her.
Just like all those years ago, he aches for her to speak to him. He’s never told her that he’s sorry for cheating on her, for hurting her, for stealing that smile from her lips for so long. But he is sorry and hopes that she somehow knows this, that she can sense the regret and apology in him the way he can sense this new joy in her. He wants to hear her voice tell him that she’s okay. He wants to be forgiven. He wants.
The syringe is emptied. Karina refills it with a second helping. As she’s reattaching it, her warm, gloveless hands touch his bare, concave stomach, and although from her perspective, her hands are in the business of feeding her ex-husband through a PEG tube, for Richard, the touch feels intimate, personal, human.
At first, embarrassed, he hopes she doesn’t notice that he’s hard beneath the bedsheet and his boxers, but then he hopes she does. Every day he wakes to morning wood and can do nothing but wait it out. He hasn’t masturbated since his left hand left him in October. He purposefully no longer imagines anything sexually desirable during this daily rise and fall. But now, as he’s unexpectedly turned on, he imagines Karina touching it, touching him, and his desire is excruciatingly urgent, building in his penis, his heart, and his mind, silently begging for her to notice. He wants her to lie down next to him, to kiss him while stroking him. He wants to be a man and not a failing body in a bed. He wants to be touched, to be loved, to come. It’s been so long. He wants.
She finishes the syringe, flushes the tubing with water, and caps the MIC-KEY button. She lowers his shirt, pulls the covers up to his chest, and stands.
“Okay, you’re good until ten. You want the TV on?”
He stares at her, unblinking.
“You want anything?”
He smiles. If only he had the strength to tell her.
She hesitates, eyeing him quizzically. “Okay, I’ll check on you in a bit.”
She leaves the door to the den cracked open. He sits in bed and stares at the open door, listening to the sounds of her making her own dinner in the kitchen, wanting.
CHAPTER TWENTY-NINE
Richard sits in his wheelchair in the living room where Karina left him about a half hour ago, where he’ll stay until Karina or the next home health aide moves him. She parked him in a rectangular patch of sunlight, angled toward the windows, as if a warm and sunny view of Walnut Street is supposed to make him feel more optimistic, less trapped. He knows she’s well-intentioned. He watches the blithe movement of squirrels and birds. Everything alive moves.
He hears Karina sneeze three times. She’s been fighting a cold for the past week, staying away from him as much as possible so as not to infect him. She’s in the kitchen, cooking breakfast. Triggered by the torturously delicious smells of coffee and bacon, saliva pools in his mouth. He gurgles on it and swallows over and over, trying to push the gluey liquid down, struggling not to choke. A string of sticky drool descends over his bottom lip and lands on the cotton towel draped over his chest like a bib for this very reason. He turns his head left and right, but the spiderweb of drool won’t break. He gives up.
He shifts his focus away from the sun and animated existence and instead looks upon his Steinway. Eighty-eight glossy black and white keys. God, what he wouldn’t give to touch them.
Ten feet in front of him.
A million miles.
He stares at it with agonizing desire and apology, as if he’s broken a sacred promise, a marriage vow. He imagines the action of each key, the blending colors of sound, music coming into existence, birthed through his body. He imagines a series of ascending arpeggios, and they become the sound of Karina’s laugh.
His piano. The relationship is over. He’s still working on letting it go. It’s not you, it’s me. Taking the blame doesn’t change a thing. They are divorced, rejected and abandoned, reduced to pitiful statues collecting dust in the living room.
Careful not to tip his head even slightly downward else it flops forward, chin to chest, unable to right itself, he stares at his legs, his feet angled toward each other, pigeon-toed, and he suddenly resents Bill for arranging his feet in this unmanly way, a body position that speaks uncertainty, meekness, submission. Then he laughs at himself, as if anything about an emaciated man dying of ALS in a wheelchair could possibly communicate machismo, as if anyone but his piano were in the room to judge him. Bill dressed Richard’s feet this morning in thin wool socks and black loafers. Shoes on a man whose feet will never again walk this earth. The irony and tragedy of wearing shoes make him want to cry. He can’t stand to look at his feet. Literally.
Instead, he studies the rubber flesh of his flat right hand, limp and lifeless; his curled, distorted left hand, no longer possessed by him; both placed on pillows over the arms of his wheelchair in exactly this position by Bill over an hour ago. Richard’s entire body is a costume discarded, the party over. He returns to what used to be his elegant left hand and commands the fingers to straighten, knowing they won’t. He changes tack. Please. His limbs are petulant children, unreachable through begging, bribery, ultimatums, or sweet talk.
He tries to imagine the war beneath his skin; the invaded countries of his neurons and muscles overwhelmed, decimated; the neutral territories of bone, ligament, and tendon rendered useless by the horrific destruction surrounding them. His entire body is detaching, unzipping from his soul.
He turns his head ninety degrees left, then right, testing himself, relieved that he can still do this. Once his neck and voice are paralyzed, he’ll be reduced to eye-gaze technology and a computer-generated voice for communicating. He opens his eyes wide and pinches them shut tight. Good. When he can no longer blink, he’ll be locked in. He doesn’t want to die, but he hopes he dies before that happens. Maybe that won’t happen.
He can feel his tongue wriggling inside his mouth, undulating as if a family of earthworms were dancing within it, celebrating a rainstorm. When he speaks, his tongue feels thick, the volume thinned and barely audible. His words, once a finely detailed painting, are painfully slow to produce and almost impossible to comprehend, strangled and lacking consonants. A Pollock piece. Free jazz.
Already compromised to what Dr. Goldstein says is now 39 percent forced vital capacity, every single inhale is a struggle. Every exhale is incomplete. He’s forced to sip air a teaspoon at a time when he’s desperate to gulp it down by the gallon, each taste an agonizing disappointment, evidence of the withering muscles surrounding his ribs, his abdomen, his diaphragm. Pulling in enough air to simply sit motionless in the wheelchair is conscious, draining work.
He’s probably close to needing the BiPAP 24-7 but won’t admit this aloud or even request it for purposes of a temporary rest during the day. He won’t let anyone advance his wheelchair one inch onto the handicapped ramp of that slippery slope. Even now, every single night, he still can’t believe this is his reality. He’s traded bed partners, beautiful women for a BiPAP. It’s the worst monogamous relationship of his life. And they can never break up. Without the BiPAP at night, he might retain too much carbon dioxide in his sleep and suffer brain damage or suffocate and die.
He doesn’t want to die.
He opens his mouth wide and closes it several times, regrettably sensing a new and unmistakable slackness in his jaw. And so it begins. Once the weakness ensues, there is no abortion, no retreating, only a relentless, insidious icy downward luge into paralysis. Soon, his jaw will hang open, ribbons of saliva will continually stream over his bottom lip, and he won’t be able to talk. He frowns as he imagines this likely development, the impossible-to-mask spectrum from pity to disgust in Karina’s and Bill’s and every stranger’s eyes when they look at him. He doesn’t even want to face his piano like that.
When will
this next irreversible insult be inflicted? Tomorrow? Next week? End of the month? This summer? The answer is yes.
He studies his hands that will never again look familiar to him, fingers that used to carry exquisite strength and agility, that a year and a half ago played eighty-seven pages of Brahms I without error. He misses playing Brahms, feeding himself lunch, scratching his nose, touching a woman, making Karina laugh. He apologizes to his beloved piano for abandoning it, to Karina for abandoning her, and he suddenly feels the cumulative weight of every single loss all at once like a concrete slab dropped onto his chest.
And he can’t breath. Without the slab on his chest, every inhale was already an intended dive into open ocean, stopped dead in ankle-deep water. Now, suddenly, the tide has gone out. He’s gasping, drowning on dry land. He can feel the adrenaline kick, the fight-or-flight animal instinct. This is life threatening. More air now. Yet, he can’t run, and he can’t fight, and he can’t get more air now. He tries to use his next exhale to call for help, but he succeeds only in spitting. Karina’s in the kitchen drinking coffee, and he’s dying in the living room without notice.
Inhale. Exhale.
His body is seized, the tendons and muscles of his neck squeezing, shaking violently with effort. Each breath feels like drawing air through a thin, clogged straw. It feels like suffocating. Fear rises in his throat where oxygen should flow. He swallows, choking on it.
Breathe in. Breathe out.
Shallow sips. He’s so hungry for air. His cells are literally starving for oxygen. Keep breathing.
He calls up what it took to master Rachmaninoff’s Piano Concerto no. 3. Ten grueling hours every day, relentlessly focused, playing each movement over and over, fighting through excruciating physical pain and mental exhaustion until he could play the entire piece by memory and without error. Now his tenacity, his will, his purpose, is trained on breathing.
In. Out.
This is now his song to play. He is not this paralyzed body, these screaming lungs, this primal fear. He will be an instrument of breathing.
Breathe.
Again. Pull the air in. Push it out. Again. It’s not enough. He’s fatigued, strangled, starving for air, failing.
A few short and long months ago, playing piano was like breathing to him. Now breathing is breathing to him. His work. His purpose. His passion. His existence. He has to keep breathing.
He doesn’t want to die.
CHAPTER THIRTY
Karina panicked and called 911. Richard was intubated in the ambulance by a woman with intensely focused blue eyes and a raised coffee-bean-brown mole above her right brow. He never lost consciousness and kept his eyes on hers while she worked on him. Insertion of the endotracheal tube was violently swift and invasive, and the gagging, discomforting pressure of the first few moments was quickly eclipsed by the massive relief of air moving in and out through his windpipe. Once in the ER at Mass General Hospital, someone drew blood, and he had a chest X-ray, which revealed pneumonia. A nurse ran an intravenous line of antibiotics, and he’s now in the ICU with Karina, waiting for Kathy DeVillo.
Karina is standing next to him, over him, her arms crossed as if hugging herself, watching him intently, studying him, which worries him because he’s not doing anything. He wonders what she’s seeing. She looks scared.
The antibiotic fluid running through his veins is ice-cold. Despite staring at him like a specimen under a microscope, Karina doesn’t seem to notice that his skin is covered in goose bumps. He wishes she’d lay a heavy blanket over him. His face itches where the tube is taped across his mouth, and he wants to ask Karina to scratch it for him. He tries to talk, but his effort is smothered, blotted out when it hits the impenetrable wall of hard plastic running the length of his throat. He cannot speak. He stares wide-eyed at Karina, sharing her fear.
With the BiPAP, he was still in charge of breathing. He initiated the inhales, and the machine assisted him, ensuring that the draws were deep, the exhales complete. As he watches his chest rise and fall, he realizes he’s no longer involved. The ventilator is doing 100 percent of the work. He is being breathed. His fear dials up. His heart pounds as if running for its life. Yet his breathing is steady, untethered from his terrified heart and the blood accelerating through his cold veins.
Kathy DeVillo enters the room, wearing black yoga pants, a frumpy oversize gray sweater, a soft pink scarf, no jewelry, and no makeup. It’s Sunday. He imagines her at home on her couch, watching a movie on Netflix when she was paged. He wishes he could apologize for bothering her like this. She stands on the other side of the bed, opposite Karina, and takes a noticeable moment before speaking. Her mouth is somber. Her eyes look into Richard’s like peaceful warriors.
“Hi, Richard. Hi, Karina. So.” Kathy sighs. “Here we are. I’m going to do a lot of talking. You ready?”
No one answers.
“Yes,” says Karina.
Kathy gives Karina a close-lipped smile and then looks straight down into Richard’s eyes, waiting a moment. He’s afraid of what she’s about to say. Although he’s never heard the speech she’s about to deliver, he knows what’s coming. This train has been barreling toward him on a one-way track for fifteen months. And he’s still not ready for it.
“So you know you’ve been emergently intubated, and you’re in the ICU. My purpose today is to give you all the information I know. I’m your GPS, but you’re still the driver of the bus, okay? I’m here to tell you, if you go right, this will happen. If you go left, that will happen. You make the decision, but here are the consequences, okay? Blink once for yes. Keep your eyes open for no.”
Richard blinks.
“If you hadn’t been intubated and put on a ventilator, you would’ve died. Falls, significant weight loss, and pneumonia, these are the three red flags of ALS. They signify the disease escalating and failure to thrive. When these happen, it tips you over the cliff. About a month ago, your FVC was around thirty-nine percent. The pneumonia tipped you over. You weren’t getting sufficient oxygen, and you don’t have enough reserve. The choices now are to have the tracheostomy surgery and stay on a vent or to be extubated and terminally weaned.”
She pauses. No one says anything. Terminally weaned. Does that mean what he thinks it means? He can’t ask.
“So let’s look at the first choice. The surgery. The general surgeon will say, ‘Trach surgery is no big deal,’ and he’s right. It’s a straightforward procedure. That’s his tribe’s language, but it’s not the language of ALS. In terms of your psychological well-being, this choice will change your life. It’s a very big deal. If you get the surgery, you will need a lot of infrastructure to care for you.”
She points her gaze at Karina, and Kathy’s expression is high-definition clear. Karina would be the infrastructure.
“In theory, you can get trached and vented and live a normal life span. But you’re going to need twenty-four-hour, seven-days-a-week, three-hundred-sixty-five-days-a-year ICU-level care. You either need to pay about four hundred thousand dollars a year for private nursing care, or you’ll need at least two people willing to do this for you at home. This is required. You’re in the ICU. Only certain specialized docs and nurses can care for you now. Unless a minimum of two people get extensive training to be your ICU nurses, we cannot let you go home because it wouldn’t be safe. It’s a 24-7-365, no-vacation job.”
“What about long-term-care facilities? Could he go there?” asks Karina.
“There are three places in Massachusetts equipped to care for people with a tracheostomy on a ventilator, but there’s about a one-year waiting list for a bed in any of these, and it’s extremely expensive. Most insurances won’t cover it. Yours doesn’t cover it.”
Richard watches Karina’s face pale as she begins to absorb the dreadful ramifications of this choice.
“A trach is not a silver bullet. If you get this surgery and go on a vent, you are trading one can of worms for another. You’re still getting a can of worms. This is not
a cure, okay? It’s important you understand this. The disease will continue to progress. You might eventually be locked in. All you’re doing is protecting the airway.”
“What happens if he doesn’t get the surgery?”
Although Karina asked the question, Kathy delivers her answer to Richard. She never breaks eye contact.
“If you choose not to do the surgery, we’ll either order a palliative-care consult here or you’ll go home to Hospice. You’ll be extubated to a BiPAP. They’ll give you medication to keep you comfortable, and they’ll slowly bring down the BiPAP machine. Your breathing will get shallower and shallower, and eventually you’ll stop breathing on your own. You’ll die of respiratory failure.”
Death by suffocation. He’s avoided imagining this in any detail, what the actual end of ALS might look like for him. Even with the need for the PEG tube and the BiPAP and the paralysis of his legs, despite every escalating loss in ability, thoughts of his death continued to be blurry and remote like a car racing by on a road in the distance, the make and model impossible to describe. Now the damn thing is parked right in front of him, and his heart is screaming, pounding, panicked. Again, his breathing remains calm, dictated by the ventilator, and the mismatch in physiology feels like a shattering earthquake in the foundation of his being. Like he’s coming apart.
“Could the antibiotics clear the pneumonia and then he’d be like he was before this happened and breathe on his own?”
“This isn’t a spinal-cord or lung injury. This is his diaphragm no longer working. It can’t heal.”
“But he was breathing earlier today. Couldn’t this be just a momentary crisis and he could come off the vent and still breathe?”