CHAPTER SEVEN
Alone in a cheerless examining room, Richard waits for Kathy DeVillo. It’s the beginning of October, and this is the fourth time he’s waited in a similarly impersonal room for her, the first instance almost a year ago. Kathy is the nurse-practitioner overseeing his medical care at the ALS clinic. Care is the term they use here, and Richard doesn’t openly object, but care is not what’s provided every three months when he comes for his appointment. The staff all mean well. He has no doubt of this. Kathy is nice and clearly cares about her job and him. But as an ALS care coordinator, her pockets contain little more than tongue depressors.
These clinic visits primarily amount to data collection, a chronicling of worsening symptoms indicative of disease progression. Every three months, the losses are noticeable, significant, and Kathy and others record these losses in various charts. Each clinic day is a Q&A series aimed at measuring what has gone from bad to worse. Kathy will offer some practical strategies for coping, some sympathetic nodding, and a preview of coming attractions: You think this is bad, wait till you see what’s next! His neurologist might adjust the dosage of Rilutek. He might not.
It takes at least three hours to do all the measuring, and by the end of every clinic day, Richard’s morale is battered and defeated. He swears he won’t come back. What’s the point? Given that he has only a limited number of hours left as an animated being on this planet, to squander any of them sitting still in this room with Kathy, or waiting for Kathy as the case may be, feels like an egregious injustice or at least utterly irresponsible. Yet, he comes. He does as he’s told, which surprises him, as passive obedience isn’t at all consistent with his character.
If he had to put his soon-to-be-paralyzed left finger on it, he’d admit that he dutifully comes to each clinic appointment because he still has hope. Maybe there will be a breakthrough, a new clinical trial drug, something to slow it down, a cure. It could happen. What were the odds that a boy raised to devote his time equally between football, tractors, and Bud Light in rural “Live Free or Die” New Hampshire would grow up to be a world-renowned concert pianist? Probably the same as some scientist discovering the cure for ALS. It could happen. So he waits for Kathy.
She finally enters the room, pink faced and out of breath, as if she'd just jogged over from another wing of the hospital. She’s wearing tortoiseshell glasses, a black knit sweater unbuttoned over an untucked white blouse, pants that are too short for her, and flat shoes fit for running the halls of the hospital, her look more librarian than nurse. She washes her hands while saying hello, then settles into the chair opposite Richard and reads his record of decline from three months ago, his new baseline, the treacherous edge from which he’ll now cliff dive.
She looks up at him and raises her eyebrows. “Where’s Maxine?”
“No longer together.”
“Oh, I’m so sorry.”
“That’s okay.”
With the exception of Maxine, Richard’s relationships with women had about the same shelf life as a carton of milk. Most met him after a performance, at a VIP cocktail party or charity fund-raiser, starstruck and fascinated. They fell hard and fast, looking past his wedding band when he was married. In the beginning, they also tolerated his moodiness and the time he committed to the piano instead of them. They saw his passion for the music of Brahms, Chopin, and Liszt, the love and devotion he was capable of, and assumed the skills were transferable. To everyone’s disappointment, he’s never been able to love a woman the way he loves the piano. Not even Karina.
So, invariably, the women became frustrated, lonely, and dissatisfied with their lot as second fiddle. Third, if they realized they were in line behind his wife. At first they tried even harder. It never worked. He doesn’t know why. Maybe human beings are capable of only so much passion. The pie has only so many pieces. For Richard, all but a sliver is devoted to piano. He loves women, appreciates them as much as any man, but ultimately they find themselves achingly hungry with him. And he refuses to feed them. His artistry for playing piano seduces them. His lack of artistry as a man is why they leave.
Steeped in denial, he started seeing Maxine two months after he was diagnosed. She didn’t notice that he couldn’t lift his right arm above his elbow or that he always positioned himself to her right so he could hold her hand with his left. He might’ve slurred his words a touch in the evening when his energy waned, but they’d just shared two bottles of wine. Then one morning she caught him weeping, his hands in his lap at the piano, and he confessed everything.
Instead of running for the hills, she rolled up her sleeves. An acupuncturist, she was convinced she could save him. But no amount of needling, cupping, or burning moxa could prevent his right arm from steadily filling with concrete. She kept at it, but they both knew the effort had become insincere.
Decency laced with guilt prevented her escape. The situation wasn’t healthy for either of them. Sex became quick and unimaginative. She became afraid of his body. He became indifferent to hers. He focused on her imperfections. She wore too much eye makeup. She had bad breath. She wasn’t beautiful enough, interesting enough, challenging enough. Her list of complaints was just as lengthy.
For four months, they argued and sulked and danced silently around the real reason the relationship had to end. It took him that long to accumulate the courage he needed to break up with her. She didn’t protest. They hugged for a long time, then she walked out the door. It was the most unselfish act of his life.
“Anyone looking after you?”
“No. I’m doing okay on my own.”
“You’re going to need help. Your parents, a relative, friends. You can hire private nurses, home health aides, but that will get expensive. Can you call on someone?”
“Uh-huh.”
His mother died of cervical cancer when she was forty-five. Richard is forty-five. Apparently, a rough age in his lineage. He hasn’t spoken to his father in years. His two brothers live in New Hampshire. They work full-time, and their wives are raising young kids. They aren’t options. Grace is in school, and that’s where she belongs. He still hasn’t told her. He doesn’t know how. He draws Karina’s name next but immediately returns that card to the deck. There’s no way.
“How’s your living situation? Did you find a new place?”
“No. I’m still good where I am.”
“Richard, you’re on the fourth floor of a walk-up. Really, you have to get into a new place ASAP, before you need a wheelchair. You’re going to need elevators, ramps. Okay?”
He keeps his gaze steady, refusing any sign of agreement. He can still walk. How could he be in a wheelchair ASAP? He knows this is where the disease goes, yet he can’t bring himself to fully imagine it. He looks into Kathy’s big brown eyes. She can. Easy-peasy.
“So tell me what’s going on.”
“It’s starting in my left arm. I can’t raise my hand above my shoulder, and my fingers are a bit weaker. I can’t lift anything heavy. I’m dropping things. Walking is still mostly okay.”
“Mostly.”
“Yeah.”
“Okay. What about eating, drinking, talking?”
“Mostly okay.”
“Okay, we’ll check out these mostly’s, see what’s happening. Let’s start with your left hand. Spread your fingers and don’t let me bunch them back together.”
He spreads his fingers like a starfish. She scrunches them together with one second’s minimal effort.
“Hold your hand straight out in front of you and don’t let me push it down. Resist me.”
She applies a bit of pressure, and his arm collapses to his side. The last time he was here, he still had the use of both arms and could raise both hands when asked. But his right arm crumbled with the mere suggestion of force on Kathy’s part, and he remembers the terror that rushed through him like a cold blue current, chilling his heart, realizing that he possessed almost no strength in that arm and that he was about to lose the use of it entirely and forever. He remembers thinking, At least I still have my left arm. He glances now at his left hand, defeated and shamed by his side, and he knows what this profoundly simple exercise will look like in three months’ time.
“Make an A-OK sign with your thumb and index finger and lock them into a ring. Don’t let me pull them apart.”
She pulls them apart.
He wants to punch this nice lady in the face with his feeble hand.
“Show me a big smile, so big it’s fake. Like Hillary.”
He does.
“Now pucker. Like Trump.”
He does.
“Open your mouth and don’t let me shut it.”
He opens his mouth, and with the heel of her hand under his chin, she steadily closes his bottom jaw.
“Stick your tongue out and don’t let me move it.”
She pushes down and right and left on his tongue with a Popsicle stick, shifting it in each direction.
“Lick your lips all the way around.”
Her eyes track his tongue in a circle.
“Fill your cheeks with air and don’t let me pop them.”
She does.
“Are you having any trouble blowing your nose?”
“No.”
“Any trouble with saliva?”
“Like, am I drooling?”
“Yeah.”
“No.”
“How about coughing? Any trouble clearing your throat?”
“Not really.”
“Let me see. Cough from deep down. Give me a big throat clear.”
He tries to take a deep breath but hits a wall sooner than expected, and so his cough comes out shallow and sputtering. He’s embarrassed. He was going for the cough of a lion, but instead he’s a kitten hacking up a hair ball.
“Take a big breath and expel a note for as long as you can. Ready? Go.”
He chooses middle C and runs out of air at about fifteen seconds. Is that normal? Kathy doesn’t say.
She goes to the sink and fills a plastic cup with water.
“Here. Take a few sips and then chug the rest.”
He does while she appears to study something about his Adam’s apple.
“Is taking your meds giving you any trouble?”
“No.”
“Good. Taking pills is the highest level of swallowing. So that’s great. Water’s the fastest liquid and will give you the most trouble. You drink coffee?”
“Yeah.”
“How do you take it?”
“Black.”
“Okay, you need to switch now to cream. Thicken all of your liquids. Make them slower. Thin liquids can lead to aspiration. How’s your weight?” She looks through the pages of his various charts.
“I’ve lost a few pounds.”
Eating has become a joyless, necessary chore. Anything that requires a knife and fork is out. Gone are medium-rare filets mignons at Grill 23. Opening jars and the packaging to his favorite cheese and the twist tie on a new loaf of bread requires a collaboration between his left hand and his knees and his teeth and a patient persistence he often doesn’t possess. Unable to lift his hand to even shoulder height at the end of the day, he has to lower his mouth to meet his fork or spoon. It’s painstaking and sloppy, and he looks ridiculous, and because he can’t get over worrying about what he looks like, he refuses to eat in public. Dining used to be a social and savored experience. Now he mostly orders takeout and eats alone.
And he’s started choking. The muscles that coordinate the safe movement of food from the back of his mouth down the esophagus to his stomach must be weakening because sometimes food gets lodged halfway down the tube or, worse, sucked down the wrong pipe. And as they just witnessed, he now has the coughing capacity of a kitty cat, so a small bite of cracker has been a life-threatening endeavor more than once. Almost killed by a cracker. He doesn’t share this with Kathy.
“Okay, yup, you’ve lost seven pounds in three months. We need to stabilize your weight. You need to eat more. High-fat, high-density foods and liquids.”
“Okay.”
“Cream in your coffee, butter on your bread, pies à la mode.”
“Everything my cardiologist recommends.”
“We’re not going to worry about heart disease.”
Right. A heart attack would be a blessing.
“Can you lift your right leg for me and don’t let me push it down?”
He resists her for many sustained seconds through increasing pressure before he finally fails. They do the same exercise on the left until he fails.
“Good. You experiencing any foot drop, any falls?”
“No.”
He’s lying, and his heart beats faster as he waits to see if she catches him. He clipped his right toe on a step going up his front stoop last week, and he fell hard, bashing the right side of his chin and trampling his paralyzed forearm underneath his body. He’s wearing a long-sleeve shirt, hiding the massive bruises covering his right arm, and his beard is apparently thick and dark enough to mask the scabbed gash on his chin.
She taps his knees, checking his reflexes. She performs various strength tests on his feet. He gets a passing grade.
“Any cramping?”
“No.”
“Your legs are looking good for now. But your arm is going, so you won’t be using a cane or a walker once your legs weaken. The power wheelchairs take three to six months to get, so we’ll have PT put in an order for you now.”
Again, he stares at her with a flat gaze. She can go ahead and order the chair, but he won’t endorse this decision with a blink or a nod.
“I’m worried about your dysphagia and the weight loss. Have you thought at all about whether you want to get a feeding tube?”
Only in that he doesn’t want to think about it. “No.”
“Okay, Dr. Prince will talk you through what’s involved and schedule you for the procedure if you decide to go ahead.”
He was scheduled to play in Chicago, Baltimore, Oslo, Copenhagen. He’s supposed to schedule piano concerts, not feeding-tube surgery. His head swims.
“Your breathing still seems strong. Dr. Kim’s going to see you next to check you out more thoroughly there.”
Dr. Kim is the pulmonologist.
“Have you banked your voice yet?”
“No.”
“Is this something you want to do?”
“I’m not sure.”
“It might be a good idea to look into that now. When the time comes, you can always use the synthetic, computer-generated voice, but it’s really nice to have the option of still using your own. The guy who does the banking is at Children’s Hospital. I’ll make sure you have his contact information before you leave today. If you want to do it, I wouldn’t put it off much longer.”
Kathy flips through his charts, pencils in some additional notes that Richard can’t decipher, then looks up at him and smiles, satisfied.
“That’s all for me. Do you have any questions? Anything you need that I can help you with?”
Let’s see. What does he need? He needs to bank his voice because he’ll soon be unable to speak, and the alternatives are to sound like Stephen Hawking or be totally mute. He might need a feeding tube. He’s going to need a wheelchair ASAP. He needs a new apartment with an elevator and ramps. He needs someone to look after him.
It’s too much to take in. Too many losses and needs at once. He tries to focus on what is most immediate. The loss of his left hand. He’ll have no hands. He’ll no longer be able to feed himself, dress himself, wash himself. He’ll empty his bank accounts and hire help. He won’t be able to type on the computer. He’ll use his big toes.
He’s going to lose Ravel’s Piano Concerto for the Left Hand. He’ll never play the piano again.
This is the loss he’s imagined in microscopic detail from the first hints of this disease, the one that guts him through his center and keeps him from sleeping and makes him want to swallow a bottle of pills and end his life now. Because without the piano, how can he live?
Yet, this isn’t the loss that has him suddenly stunned and panic-stricken, unable to swallow his own pooling saliva. He’s thinking about Maxine again, and he’s revisiting their good-bye hug. He can still feel her body in this remembered embrace, her breasts pressed against his chest, her wet cheek on his shoulder, her breath on his neck. He can feel the apology, the tragic love story in the memory of that hug. He let go first. Maxine quickly followed his lead, slipped out of his arms, and left his life. He wishes now that he’d hung on a little longer.
He’s about to lose his left arm. Three months ago, he hugged Maxine for the last time. Could that be the last embrace of his entire life?
He swallows hard, but he chokes on his spit, and the coughing quickly turns to crying. Kathy offers him a tissue. Humiliated, he takes it. But then again, he decides he doesn’t care. What hasn’t she already seen in this room? He sputters, coughs, cries, and drools through three more tissues, then collects himself just enough to find his voice.
“I need a hug.”
Kathy sets the tissue box aside without hesitating and stands in front of him. Richard rises to meet her, and she wraps him in a firm embrace. He’s dousing her sweater with his tears and runny snot, and Kathy doesn’t flinch. He hugs her with his left arm, pressing her into him, and she responds, hugging him back, and their contact creates a human connection that feels as vital to him as the air he can still breathe.
He can’t name the element at first. The connection isn’t about hope. It doesn’t contain sympathy. It’s not made of love.
It’s care.
Richard exhales and doesn’t let go. Kathy stays with him.
This is care.