Every Note Played(31)
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.