Every Note Played(12)
Richard leaves the piano. He retreats to his bedroom, undresses, and crawls back into bed. He does not call his agent. He lies on his back, staring at the ceiling, wishing he could stop time, hiding from his future, knowing without any doubt or hope that someday soon he won’t simply be peeking down that rabbit hole.
He’s going to live and die in there.
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.