CHAPTER FOURTEEN
There aren’t any Hallmark cards illustrated with doe-eyed characters or inspirational quotes that celebrate the life moment when a man moves back in with his ex-wife. For eight days now, Richard has been living at 450 Walnut Street, the house he lived in with Karina and Grace for thirteen years, the house he left when he and Karina separated a little over three years ago, the house conveyed to Karina free and clear in the divorce settlement. More specifically, he’s been living in the old den, now his new bedroom, on the first floor.
Practically speaking, the move was a summer breeze. Aside from his clothes and toiletries, he needed only to move his computer, his TV, his Vitamix, and his wheelchair. He left everything else behind for his real estate agent to use in staging his condo. She says the piano in particular shows well, helps potential buyers to imagine a cultured life there, especially once they learn whom it belonged to and that it comes with the unit if they want it. She was ecstatic to see the wheelchair go. In her thirty-two years in the real estate business, she says that nothing ruined the feng shui of a home more than a power wheelchair.
He even left his king bed, as his occupational therapist convinced him that now was the perfect opportunity to order the hospital bed he needs. Weakening abdominal muscles plus no arms equals one hell of a time getting up from a flat mattress. He hated agreeing to it, but he has to admit that he sleeps much better in the twin hospital bed with the back raised to about sixty degrees than he did propped up on two or three pillows on his horizontal Posturepedic, and getting up without assistance is infinitely easier.
Emotionally speaking, the move was a Category 5 hurricane. Getting out of this house, away from Karina and the unsettled turmoil between them, and starting over in his own place in Boston had felt like a glorious victory, as if he’d won some grand prize or been released from prison or been allowed to graduate despite failing a required class for years. He remembers those first few mornings alone, the delicious moment upon wakening when he realized that she wasn’t next to him or anywhere under the same roof, and he felt relieved, revitalized, ten years younger. And now, here he is, back under the same roof, demoralized, pathetic, emasculated, dying.
His new bed sits where his piano used to be. Where his passion, his love, his life, used to be. Now, in all likelihood, unless Karina panics and calls 911, this is where his death will be. He tries to ignore his deathbed, but there’s no avoiding it. Even when he’s not sleeping or sitting on it, when he’s at his desk or watching TV from the easy chair, he feels it near him, waiting for him.
He is grateful to be living on ground level, to no longer have to negotiate three flights of stairs or a locked front door if he wants to go for a walk. He can open and close the garage door though voice activation of an app on his phone, and Karina keeps the door from the garage to the foyer propped open. So he can come and go without the need for keys or contingency plans.
But there’s a rub. In Boston, he could go anywhere anonymous, unseen. Here, he knows all the neighbors. Despite their well-meaning smiles and hugs and conversation, he wishes he could step outside and be alone, unnoticed. He doesn’t want to be seen like this.
His wheelchair is currently stored in the back corner of the garage, blessedly out of everyday sight. When he needs it, a construction project will be necessary. Karina assumes that it’ll fit through the doorway, but she hasn’t checked. He’s spent countless hours alone in his living room sitting opposite that chair, as if they were staring each other down, and he’s memorized the size and shape of his enemy. A quick eyeball of the entryway and he’s already surmised that the geometry doesn’t work. Twelve steps lead up to the front door. They’ll either need to widen the doorway from the garage to the foyer or build a ramp over the front steps. The ramp will likely be cheaper. That or a bottle of pills.
He’s at his computer, writing the seventh letter to his father that he won’t send. He hasn’t sent the other six. All are saved, but none are sent. Saved for what? When? Later. Later, which used to mean some nebulous, indeterminate time in his infinite future, has taken on a sense of immediacy since his diagnosis. Diagnosed a year ago with a disease that comes with an average life expectancy of three years, later is right fucking now. Yet, time for him is strangely both compressed and spun out. A day can seem to drag on for a week by midday, then pass by in a skinny minute during that same evening.
Is he saving these letters for his deathbed? His funeral? Will his father even come? The father he wants would be heartbroken to read that his youngest son has ALS. He’d drop everything to be by his son’s side, supporting him with whatever he needs, his biggest champion to the end. The father he has might not even reply, which is probably why Richard can’t bring himself to hit SEND. Maybe he’ll print the letters, roll them, stuff them in glass bottles, and toss them into Boston Harbor for some other father to find. Maybe he’ll delete them.
He’s using a Head Mouse to type. A camera clipped to the top of his laptop screen detects the shiny target stuck to the tip of his nose, and the cursor moves wherever he points his face. When this technology was first introduced, the directions suggested sticking the mouse target to the user’s forehead, hence the name. But most people wear the sticker on the bridge of their glasses or, like Richard, on their noses.
The door to his old den/new bedroom is intentionally left open, a lack of privacy traded for the ability to come and go without needing to call for Karina to come and open the door. Like letting the dog out. He’s an animal in a cage. A pig in a pen. An ex-husband in the old den.
Despite being able to come and go, he restricts the majority of his time to this room, mostly for fear of stepping on any number of unresolved eggshells and land mines hiding beneath the floorboards of this home. And in the private company of his desk, TV, and hospital bed, he can sometimes forget that he’s living under the same roof, under the care of his ex-wife. While he feels some relief in knowing that Karina is around should he need help, he’s also loath to ask her for it.
He’s hungry. He’ll wait two hours for the next home health aide to come and make him a smoothie. He’s cold and could use another layer. Think warm thoughts. He has to move his bowels and will need to be wiped. It doesn’t matter that Karina already dealt with far worse on that fateful, humiliating day at his condo. He’ll hold it in.
He lost Melanie and Kevin and the other home health aide regulars in the move due to geography. They serve only clients who live in the city of Boston. But Bill worked his magic and stayed on even though Richard now lives nine miles outside Bill’s official territory. God bless Bill.
Through the open door, he can hear Karina’s piano student playing in the next room. The student is dreadful. Richard leaves his unfinished letter to his father and peeks through the open door. A girl, a teenager. She has terrible posture, neck and shoulders slumped forward and down. Karina should correct that. It takes him a minute to figure out that it’s Chopin’s Nocturne no. 2 in E-flat Major that she’s slaughtering. Her playing is uninspired and sloppy with many fits and starts, and Richard agonizes through every hesitation, the unfinished phrases hanging in the air, and he keeps impatiently begging her under his breath to strike the proper next note. To top it all off, she keeps forgetting the flats. This girl clearly didn’t practice last week on her own. If he were her teacher, he’d send her home without finishing the lesson.
He returns to his desk but grows tired of using the Head Mouse. He switches to pecking the keys with a pen held in his mouth, but that’s even more painstaking, and he soon gives up altogether. Instead, he sucks a sip of the milk shake left over from lunch. He doesn’t care for this one. It’s bland and too chalky, probably Ensure. His new early-afternoon aide, Kensia, left it on the desk for him. He takes another sip. It’s definitely from a can and definitely not one of the freshly made elixirs from heaven that Bill concocts for him. But he’s hungry and needs the calories, and Karina is busy, and Bill won’t be here until the morning, so Richard sucks it up.
This is his new mantra, for Kensia’s tasteless milk shakes and most everything else about this disease. He can’t play piano ever again but has to listen to some shit student butchering a masterpiece in the next room. Suck it up. He can’t live safely alone so he has to move back into his old house with his estranged ex-wife. Suck it up. An itch at the tip of his nose is intensifying every second that he doesn’t address it, but if he scratches it by rubbing his nose against the edge of his desk or the wall or his bed comforter, he risks wiping off his Head Mouse sticker and not being able to use the computer again without pen pecking until the next aide comes. Suck it up.
He returns to his chair and stares out the window, listening vaguely to the piano lesson through the open door. As his thoughts often do if given too much unstructured time, they wander into the unsolvable realm of whys. Why did he get ALS? Why him? He runs up and down the familiar streets of these frequently traveled neural circuits in his mind, knocking on doors and ringing bells, not in a self-pitying way, but more in a scientific-discovery kind of questioning. It’s always an answerless quest.
Ten percent of ALS cases are purely genetic. One of his parents would’ve had to have had ALS for his ALS to be this hereditary kind. His father is alive and well, as far as Richard knows, and will probably live to be a hundred. His mother died of cervical cancer when she was forty-five, so he supposes that she could’ve had the mutation and would’ve developed ALS had she lived longer. But he dismissed this possibility seconds after he first considered it shortly after his diagnosis. First, it’s just too freakishly unlikely and cruel that she would’ve been dealt cervical cancer and ALS. Second, and more convincing, his mother’s parents, Gramma and Papa, died in their eighties. Both from strokes, if he remembers correctly. No ALS. So his ALS didn’t come from his mother.
Five to 10 percent of ALS cases are familial, caused by a collaboration of genetic mutations. Conspiring DNA. Without genetic screening, the quick and dirty test to identify ALS as familial is the diagnosis of ALS in two other blood relatives. There is no ALS on either side of Richard’s family tree. He’s the only bad apple, rotting on a withering branch. So he doesn’t have familial ALS. This is the single satisfying part of his why line of ALS questioning because it means that Grace is safe from this hideous monster. Or at least as safe as anyone else.
His form of ALS is called sporadic, caused by something other than or in addition to the DNA he inherited. He must’ve exposed himself to something or done something to cause this. But what? Why did this happen to him? He’s not a vet and has never been a smoker. Both, for reasons no one understands, increase a person’s odds of developing ALS. Did he have some degree of lead poisoning, mercury toxicity, or exposure to radiation that led to this? Did he have undiagnosed Lyme disease? Could Lyme trigger ALS? There is no scientifically based evidence to support any of these speculations.
Was he too sedentary? Maybe too many hours sitting at a piano bench causes ALS. He pictures the warning labels printed on all future Steinways: NEUROLOGIST’S WARNING: PLAYING MAY CAUSE ALS. Obviously not.
He grew up in the seventies and eighties, when processed foods were all the rage. Maybe his ALS was caused by consuming too many chemical preservatives or additives or saccharin. Maybe it was a dietary deficiency, a lack of some necessary vitamin at a critical age. He ate and drank almost nothing but bologna, Doritos, and Tang in 1977. Is that why he has ALS? Did he drink too many cups of Kool-Aid? Did he eat too many Steak-Umms, Twinkies, and bowls of Lucky Charms?
Maybe ALS is triggered by a sexually transmitted disease, a virus yet to be identified. Are virgins safe from ALS?
Who gets ALS? From what he’s witnessed at the clinic, the answer is anyone. He’s seen a twenty-five-year-old medical student, a sixty-five-year-old retired Navy SEAL, a social worker, an artist, an architect, a triathlete, an entrepreneur, men and women, black, Jewish, Japanese, Latino. This disease is as politically correct as they get. It has no bigotries, allergies, or fetishes. ALS is an equal opportunity killer.
Why did a forty-five-year-old concert pianist get ALS? Why not? He hears his mother’s voice: Don’t answer a question with another question. But this is the only answer he can find.
Only when the playing from the next room stops does he realize that his jaw has been clenched. God, how can Karina stand it? The music begins again, but this time, it’s Karina playing, showing her student what the piece is supposed to sound like, what’s possible given those same notes. Her playing is beautiful, a soft blanket calming his agitated nerves. He gets up and walks to the slightly open door to hear her better.
Why did Karina stop playing piano? Teaching kids half-hour lessons after school doesn’t count. Why did she give up on her career as a pianist? He pretends as he often does when he first flirts with this particular why that he doesn’t already know. Unlike the ALS whys, this why has at least one verifiable answer, one that he’s never admitted aloud.
As students, she was inarguably more talented and technically proficient than he was and might’ve stayed the better player and had his career and more, but she abandoned classical piano for improvisational jazz. It was heartbreaking for him, disgusting even, to watch such God-given talent go misdirected, unappreciated, wasted. Granted, he’s more than a little biased, but to him, Mozart and Bach and Chopin are gods, and their sonatas, fantasies, études, and concertos are timeless masterpieces, every note divine brilliance. Playing them on a world stage requires education, talent, passion, technical precision, and endless hours of disciplined practice. Few people on the planet can do this. Karina was one of them. He finds jazz sloppy, incomprehensible, unlistenable, played by mostly untrained amateurs in dive bars, and he never understood how it moved Karina’s soul.
His admittedly snobbish preference for classical music aside, her singular pursuit of jazz was a doomed decision, and he told her so, many times, which probably only glued her faster to it. If a stable, well-paying, and respectable career in classical piano is a fringe endeavor, then a sustainable life playing jazz is akin to landing a job on the moon. The only shot in hell a jazz pianist has of making it is to play with the very best, to develop and nurture and elevate her playing with the other elite musicians called to do this rarest of things. Karina needed to be where these musicians were—in New Orleans, New York City, Paris, or Berlin.
After Curtis, he and Karina lived in New York. She found a regular gig playing with a phenomenal saxophonist and drummer at the Village Vanguard, which paid squat but made her so happy. She was at the beginning of something real and possible, and they both felt it. Who knows what might’ve happened for her had they stayed?
Instead, he relocated them to Boston, accepting a coveted teaching offer at New England Conservatory, a faculty position he sold to her as necessary for his career, a job that, as it turned out, wasn’t so necessary, as he readily left it barely two years later for a life of touring. He knew that moving to Boston put the brakes on Karina’s momentum and was potentially cheating her out of her life’s dream, but he never admitted this to her. And he knew this not just in retrospect, but while they were on the train from Penn Station to Boston’s Back Bay. And he said nothing. Looking back, this was possibly the most selfish thing he’d ever done.
Until eight days ago.
But that wasn’t her only chance. When he began touring, playing with a different symphony orchestra in a different city every week, every month, for years on end, he was willing to move and told her so. His home could’ve been based out of any city, out of New York or New Orleans just as easily as Boston if she wanted. Karina chose 450 Walnut Street in a suburb nine miles outside Boston. He’ll never understand why she did this to herself. Maybe fearless Karina had become afraid. Maybe that’s when he began falling out of love with her.
Karina switches to Mozart’s “Rondo alla Turca.” He listens to her play, remembering how remarkable she is and the choices they made and didn’t make and where it all got them—Richard in the den with ALS and Karina in the living room teaching a moron—and Mozart’s lighthearted notes suddenly turn dark and sinister. An anger rises inside him, not a logical notion or a fleeting feeling, but a deeply stored thick black poison.
Why is she teaching pitiful high school students when she should be a world-class, revered musician? What does she earn—maybe $50, $100 an hour? Does she do four half-hour lessons a day? How is she going to live on this?
Grace’s college tuition is already in the bank, thank God, but what little savings he has beyond this is dwindling fast. He hates himself for not having long-term disability or life insurance. But he didn’t work for a company that offered benefits. He was the company, and he was relatively young and healthy and had forever in front of him to earn more than enough money to suit his lifestyle. The worst he could imagine was a career-ending injury to his hands. But in that highly unlikely case, he’d then teach, go on a lecturing tour, take a faculty position at some school. There would always be options. He never considered the possibility of needing insurance. He assumed nothing bad would ever befall him. Certainly nothing catastrophic. Now look at them. Living catastrophes.
After all the lies and betrayals, he’s still devastated that she gave up such a rare, God-given talent for classical piano to chase jazz and then never even catch it. His mind sends fruitless signals to clench his hands into fists. His anger mixes with impotence.
It’s not all his fault.
She blames him for everything.
She lied about everything.
She would say that he betrayed her first.
Cold and wishing for a fleece for the past couple of hours, he’s now running hot. Sweat is soaking his undershirt beneath his paralyzed armpits. He feels shaken, disturbed, as if he needs to sit down or leave the house, but instead he stays pinned to the open door.
Karina’s playing stops, and now it’s the student’s turn with “Rondo alla Turca.” Nothing about it is sweet or lighthearted. He’s reminded of Grace reading aloud when she was five or six, stammering through each syllable of Frog and Toad, despairing several times a page, losing any hope of comprehension as every ounce of focus was drilled into the effort of microscopically sounding out the letters. A joyless experience. Except he loves Grace. He hates this student.
He shouldn’t do that. He shouldn’t hate this poor student. But a poisonous black hate lives inside him, and his hatred needs a subject. The easy choice would be ALS, but ALS doesn’t have a face or a voice or a heartbeat. It’s hard to hate something that isn’t human.
He hates Karina. Her excuses. Her lies.
He hates himself. His selfishness. His infidelities.
Why does a forty-five-year-old concert pianist have ALS? Maybe it has something to do with karma. Maybe his ALS is retribution for something he did equally horrendous in magnitude. Or maybe it’s because of what she did. Maybe his ALS is punishment for their mutual sins.
Or, strangely, maybe ALS is their chance to make amends. If they admit where they’d been wrong and apologize for all the hurt they caused each other and are forgiven, if they settle their bad karmic debt in this other way, maybe he’d be cured. Or, if not cured, maybe healed in some way. For both of them. He realizes that this kind of mystical wondering is akin to wishing on a star, praying to God, or believing in the prophecies of a Magic 8 Ball.
But why not try?
He pulls the door shut with his foot. He can’t tolerate one more second of listening to this wretched piano lesson. And he’d rather go on hating Karina and himself than answer that why.