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.
CHAPTER EIGHT
While her neighborhood still sleeps, Karina is standing on the sidewalk in front of her house, waiting for Elise. The cold air crowds her, penetrating her clothing, and she wishes Elise would materialize so Karina can get her blood moving. She h
ugs herself as she watches her exhales, white puffs that lift and disperse into the sky as if returning to the clouds. Realizing that she’s standing beneath one of the towering oak trees lining her street, she shifts her position a few feet to the middle of the road. She tilts her face toward the sky, searching for warmth from the sun, but it hasn’t risen yet. The door finally opens, and Elise emerges.
“Sorry. I couldn’t find my gloves.”
They fall in step and walk wordlessly through their tidy neighborhood of landscaped yards and two-car garages, still-darkened windows adorned with school-made ghosts and witches, front porches hosting impressively carved jack-o’-lanterns, pots of green and purple kale, and golden hardy mums. Without stopping, Karina plucks a Tootsie Roll wrapper from the street and pockets it. Karina and Elise won’t break into conversation until they reach the reservoir. Anxious to get there, Karina walks a touch faster. Without questioning, Elise keeps up.
They’ve been walking together one morning a week for three years. Although only recently neighbors, Karina and Elise met at a faculty dinner at the New England Conservatory of Music twenty years ago. Richard had just accepted a highly coveted teaching position in the piano department. They’d moved from New York City because of this prestigious job offer, from the jazz scene at Smalls and 55 Bar, the network of rising musicians Karina jammed with and loved, the steady gigs she played on weekends, and a promising footing in the career she dreamed of.
She didn’t realize this at the time, how one-sided the move would be when she agreed to it. She’s often wondered how much Richard understood before they packed up and left. Not being from this country, she simply assumed Boston would have a significant jazz culture. Surely, she would find other hip clubs, other talented artists, other opportunities for expression and hire. Boston loves the classical concerts of the Boston Symphony Orchestra and the Pops at Symphony Hall and the Esplanade. Bostonians are fanatically loyal to the rock and pop music of hometown bands such as Aerosmith, the Dropkick Murphys, and New Kids on the Block.
Jazz in New York, New Orleans, Berlin, Paris, and even Chicago is considered a renegade and revered art. There is no jazz scene in Boston. The musicians who play at the handful of jazz clubs in town are one-night guests. They come and they go. They don’t live and breathe here. Even before she’d unpacked their dinner plates, she realized this devastating truth and hated herself for being so naïve, so easily duped, as if she’d been promised sushi at a Mexican restaurant and never even asked to see the menu.
Elise was Karina’s beacon of hope at that first faculty dinner. A bassist and professor of contemporary improvisation, Elise talked about ragtime and Wynton Marsalis and African jazz. She’d recorded an album with her students the previous year, a campus production, not exactly Blue Note, but still exciting. Karina couldn’t wait to connect with her again, to ask her about playing somewhere, anywhere, maybe auditing one of her classes, possibly even teaching, but Elise was missing from the next faculty dinner. She’d been diagnosed with an aggressive form of breast cancer and had taken a leave of absence to undergo treatment.
Then Karina became unexpectedly pregnant with Grace, and Richard left New England Conservatory for what became an endless year of touring, so there were no more faculty dinners. Over time, Karina forgot about Elise. She retreated into the intensity, responsibility, and loneliness of full-time motherhood, resigning herself to living in Richard’s immense shadow, darker, lonelier, and far more inescapable than the pre-dawn sky of a grim November morning.
While she never planned on being a mother, she loved Grace fiercely from the moment she was born and couldn’t imagine choosing the kind of life Richard was living—gone for weeks at a time, devoting his days and weeks and years so singularly to his career. Even when he was home, he’d practice for eight to ten hours a day. He was there but not there.
She couldn’t bear the thought of being separated from Grace, of missing any milestone. She wanted to witness her daughter discovering the world—the magic of seeing her first rainbow, the feel of a dog’s fur and tongue, the silky sweet taste of vanilla ice cream. Karina wanted to be the person Grace saw when she awoke from her naps, who hugged her when she cried, who kissed her a hundred times a day. She couldn’t abandon this enormous, precious love, this gift. She loved Grace more than piano.
And if she chose Grace over piano because she loved her daughter more, then Richard must not have loved Grace at all. This is the script she wrote and read to herself for years. He must be some kind of selfish monster to not love his own daughter, and she hated him for it. She built this case against him, black-and-white and indefensible. But now, looking back, she admits to herself that her conclusion was too extreme and not necessarily true. Love isn’t measured by the number of hours a person logs. For the first time, she wonders if his affairs started before or after she began hating him.
At some point, she can’t locate exactly when, she abandoned any possibility of a career in jazz piano. The goal became too implausible, childish, foolish. She thinks about it now as she walks, the vague dream of that intended life she never lived, and it feels like a comet she’d once seen long ago blazing across the night sky, witnessed for the briefest breathtaking moment and then gone for another hundred years.
While Karina was raising Grace and resenting Richard, Elise beat breast cancer, joined the faculty at Berklee College of Music, divorced her husband, and started dating her radiologist. They married and four years ago moved from Boston to the suburbs, directly across the street from Karina. Kindred spirits reunited. Karina still marvels at this serendipity, and her Catholic mind can’t help but wonder if God led Elise here for a reason.
As they walk past Oak Hill Cemetery, the date returns to Karina’s consciousness. Today is November 1, All Saints’ Day, a national holiday in Poland. As a child, she would spend the entire day at the cemetery with her family. Everyone did this. Having lived in the United States her entire adult life, this tradition now seems a bit morbid and creepy, even in comparison to Halloween, but she always liked it. She remembers the white votive candles placed on the raised gravestones, dots of light sprinkled around her as far as she could see like stars spread across the universe.
She remembers her family gathered, her parents, aunts, uncles, and cousins telling stories of those who’d passed away. She savored the stability she felt listening to those stories, in being connected to that history, a single bead strung on an infinitely long, uniquely beautiful necklace. She loved hearing how her grandparents on both sides met, courted, married, had children. She remembers studying their names etched on the gravestones, imagining the lives she barely and never knew, and that double-edged feeling of importance and insignificance, of fate and random chance this still generates, that every moment of those four lives had to unfold exactly as it did or she wouldn’t be here.
They reach the dirt path along the reservoir and begin the three-mile loop. Here they’ll begin chatting, as if they’re finally out of earshot of their neighbors, their words safe among the trees, the Canada geese in the water, an occasional jogger, dog and dog walker.
“How was school this week?” This is always Karina’s first question, inviting the conversation that both inspires and tortures her, like a recovering addict asking for a sip of wine.
“Good. I’m loving that new student I told you about, Claire. She’s got such a great ear, and she’s so totally open to listening and failing. You’ve got to come hear her play. There’s a class show in two weeks.”
“Okay.”
“And we’re planning the student trip to New Orleans. You should come this year.”
“Maybe.”
Karina won’t go to either. Elise invites her to all kinds of shows and classes and guest lectures and every year to the New Orleans trip, and Karina declines it all. Her excuse used to be Grace. She couldn’t go because Richard was out of town, and she was needed at home. Now that she’s divorced and her excuse is at the University of Chicago, she has to come up wi
th some other reason. She’ll be too tired the evening of the class show. And maybe she’ll plan a visit to see Grace the same week Elise and her students are in New Orleans. The thought of being immersed in the jazz scene in New Orleans, that magical hodgepodge of Delta-blues guitar riffs, brassy ragtime horns, and sultry French Gypsy music is too painful for Karina to stomach. Every girl loves a wedding unless the groom is the lost love of her life.
“And maybe one of these days, you’ll come play with us, please.”
“Someday.”
Elise plays bass in a contemporary improvisation band called the Dish Pans with faculty from Berklee, New England Conservatory, and Longy, mostly in bohemian restaurants and hipster bars that have a rotating roster of live music. Someday is always Karina’s reply, and she’d like to believe that it’s true. While she plays and teaches piano almost every day, she’s restricted herself to the classical music of Chopin, Beethoven, Schumann, Mozart. The dots are already on the page, and she plays them with the obsequious reverence of a Catholic priest reading from the Bible or an actor quoting Shakespeare.
Jazz improvisation is a speech without a script. It’s twelve notes and doing anything she pleases. There are no rules, no boundaries. Verbs don’t have to follow nouns. There is no gravity. Up can be down.
And it’s collaborative. She hasn’t played jazz with anyone since before Grace was born. It shatters her heart every time she realizes how many years it’s been. She could remedy this by taking Elise up on her offer. What if someday was today? Her breath goes shallow, and the wind off the reservoir chills the sweat on her forehead. She’s too out of practice. It’s been too long. A runner laid up for years with an Achilles injury can’t simply show up at the Olympic trials. Karina imagines playing with such practiced and accomplished musicians, and the fear of her certain and overwhelming inadequacy locks her life’s greatest wish in a box.
“So I need to come clean,” says Elise. “I visited Richard.”
Karina stops walking, every muscle’s action suspended, stuck in stunned betrayal.