Instead of beginning his solo, in opposition to the overbearing silence and the voice in his head, he plays a single note, D, with his pinkie. He holds the key and the foot pedal down, listening to the singular sound, bold and three-dimensional at first, then drifting, dispersing, fragile, decaying. He inhales. The smell of coffee lingers. He listens. The note is gone.
Every note played is a life and death.
– From Lisa Genova’s Every Note Played
The convenient illusion
The illusion that we don’t need other people sometimes feels like the fundamental premise of adult life in America. The further away from childhood we get, the more taboo it feels to ask for help, especially with basic life management. Independence is a badge of honor; dependence signals failure. If worse comes to worst, we can pay someone to “care” for us as part of their job – someone who needs us to sustain their livelihood, so we can control the terms of the “care.” In the world where we’re not supposed to need anyone, our occupations are necessarily our top priority.
But that fantasy shatters, inevitably and easily, as soon as we or someone we love gets sick. Some of us won’t realize until then, when it’s too late, that no part of our lives is set up either to give real care or to receive it. Careers won’t allow it. Or we live too far away. Or maybe we’re just not connected closely enough to even a single other person.
Every Note Played is neuroscientist and author Lisa Genova’s latest illustration of how much we mortals fundamentally need each other. As the story begins, Richard Evans has a satisfying life as a world-class pianist. Recently divorced, he travels the world playing concerts and enjoying gourmet food and wine. He and his ex-wife, Karina, have a daughter now in college, though he spent too much of her childhood away on tour to be close with her now. Still, Richard feels fulfilled by his passion for piano and by new lovers. But amyotrophic lateral sclerosis (also known as ALS, or Lou Gehrig’s disease) suddenly begins to dismantle his life with terrifying efficiency, leaving him with nothing but his relationships – such as they are.
The art of caring
As a pianist myself trying to revitalize my craft after some years of neglect, I expected to relate as a musician to Richard (and Karina, also a talented pianist). The book’s premise immediately brought to mind my grandmother, a piano prodigy and renowned teacher. At 89, she’s been reconnecting with her instrument after losing her husband earlier this year. I wanted to know more about how an artist reconciles the drive for transcendent expression with the limits of the human body.
But in short order, Richard’s story dispensed with that question as almost frivolous. ALS is a degenerative disease that gradually destroys the brain’s ability to control muscles. The first loss Richard experiences is the power to move his dominant hand, which immediately devastates not only his source of income but his life’s passion. Next to go is his other hand. And just like that, his relationship with the piano – his true love – is over.
Genova doesn’t fully elide this loss. We get to know Richard intimately for the first time as he learns a Ravel concerto written for the left hand only, practicing it to perfection as he has always done and fantasizing about performing it in concert despite his illness. But he knows the truth: He’ll soon lose not only his left hand but also his ability to talk and walk.
It’s initially surprising when Genova doesn’t spend more time on Richard’s grief. But the realities of ALS overwhelm, making basic activities – like taking a walk and relieving oneself – difficult or impossible to achieve without help. One of the most memorable scenes in the book has Richard stranded on the front stoop of his apartment building after a short walk, which drained him after just a couple of blocks. He has a key in his pocket, but he can’t retrieve it without the use of his hands. The neighbor he’d counted on to let him in isn’t answering her phone. He asks a passerby for help, but she doesn’t entertain a strange man’s request to put her hand in his pocket. Meanwhile, the laxatives he’s been taking for several days are finally kicking in. In a panic, he mistakenly voice-dials his estranged wife. She drives over immediately, but still too late.
The episode raises an uncomfortable question: What is love if not a willingness to clean five days’ worth of shit off of another adult’s private parts, for no personal reward? More importantly: Do you know someone who would do that for you?
Genova returns again and again to the true meaning of care as Richard’s ALS progresses. Not long after his illness has set in, Richard attends an appointment with his nurse practitioner, a stoic woman who’s treated many ALS patients. She assesses his current functioning and matter-of-factly foretells the grim future he should expect to meet in a matter of weeks. Richard is alone at the appointment; his last girlfriend has left him to the professionals. When the nurse asks if he needs anything else before the appointment ends, Richard lets go of his pride: “I need a hug.” She doesn’t hesitate to wrap him in her arms. Richard realizes that this, more than the medical advice, is what care is.
As the story winds down and Richard faces death, he signals who he would like at his side if this is the end. Yes to the home health aide who, through it all, treated him like a person with feelings that mattered. No to his distant brothers. No to his long-time music agent, who was bound to Richard primarily by his now-moot talent as a pianist.
Some critics have observed that Genova’s narration in Every Note Played, and by extension the novel’s characters, can seem a bit cliched. Richard, scorned by his own father, is an egotist who neglects his wife and child for his career; ALS interrupts his reinvention as a middle-aged playboy. Karina, who wanted to be anything other than the housewife her mother was, abandoned her own ambitions in order to raise their daughter; she struggles to find purpose after her husband and daughter both move on.
These stories have been told many times before. But it’s an enduring truth that our closest human relationships are by turns the most meaningful aspects of our lives, and also sometimes the most challenging, for utterly banal reasons. Our family relationships create messes in our lives that may never get cleaned up; stories help us learn to live with what we can’t change. Like NBC’s This Is Us, Every Note Played is ostensibly about extraordinary circumstances but is also about the unrelenting drama that follows when people follow the undeniably ordinary path of falling in love and starting a family.
I was also struck by the sense of clarity that early mortality imposed in Genova’s telling, and by how a condition like ALS has a way of boiling human experience down to the essentials – even for famous artists dying slow, painful deaths. Let anger go. Ask for forgiveness. Love is all you need. Your kids matter most of all. These truths take decades to emerge for Richard and Karina, who spent 20 years in what many will see as a familiar struggle over who gets to be right. One of the book’s most poignant moments is Karina’s acknowledgment that, for their little family, the cost of that struggle “has been astronomical.”
Genova skillfully elicits empathy for Richard, an unlikable character who you suspect wouldn’t have found his way to life’s essentials if ALS hadn’t mercilessly dragged him there. As much as he tried to escape into piano, Richard knows he’ll never be free of the pain of being rejected by his own father:
Part of him doesn’t want his father to know. Keeping his diagnosis from his father fills Richard with an exhilarating sense of winning. He was born into a father-son game he never wanted to play, the rules still cruel and incomprehensible to him, but damn it, he’s going to win. He’s living with a disease that shaves off another layer of control every single day. Possessing control of whether his father knows or not puts a sword in Richard’s hand, a power that’s too seductive to resist. He’s going to prove, in an ultimate and final test, that he doesn’t want or need his father for anything and wouldn’t turn to him for help or love even in the most dire circumstances. He won’t give his father the satisfaction of knowing he’ll soon be rid of the son he never wanted.
But when Richard’s bombastic offense tires of wielding its sword and takes a seat, his defense is clearly visible, cowering in the corner. More than anything, he’s afraid of his father’s indifference. He wonders if his father already knows, if word of mouth has spread north to cow country, and Walt Evans is the one doing the snubbing.
Or his father doesn’t know and wouldn’t respond if he did.
Your kids matter most of all. It’s not lost on Richard that he was a bad father himself. But he hadn’t seen up close how parents turn out to need care themselves in the end. And in any case, he’d thought he had more time to make things right.
To write Every Note Played, Genova spent time getting to know ALS patients and their families. Among the multitude of tragedies in ALS is the terminal prognosis; many people die within two or three years of diagnosis. The most heart-wrenching section of Genova’s book turns out to be her acknowledgments: Eulogies to remarkable people whose families have lost them to the disease far too early.
Who’s going to watch you die
Some people don’t need mortality to remind them of the essentials. Earlier this year, my husband’s grandpa Pete passed away. Pete’s family immigrated to the U.S. from Sicily; he was born in Cleveland. Apart from his time in the Navy, he lived there all his life, surrounded by extended family and childhood friends. Pete loved to tease and laughed hardest when you dished it back at him. He always seemed happy to have your company. No matter what you looked like, where you were from, or what you did for work or play, he would try to connect with you and usually succeed. There was nothing more important to him than family, and he defined the concept loosely.
Grandpa Pete deserved a kinder decline than he got. Over several years, it got harder for him to breathe and to walk. He made fewer and fewer new memories. His three daughters – all with full-time careers – took turns caring for him, two weeks at a time. He’d recognize he was in their houses, but he couldn’t remember how long he’d been there. Or that he’d just eaten breakfast, just watched this same TV show. Or that he’d gotten that bad bruise from his fall yesterday, or that he falls a lot and that’s why people panic when he tries to use the stairs without help like anyone else would.
In the end, Pete’s daughters had to move him to an assisted-living facility so he could be monitored around the clock and get immediate medical attention when he needed it. It wasn’t enough. Still not remembering his mobility limitations, he fell getting out of bed alone and was hospitalized for a week. That was all it took for his muscles to weaken so much that he could no longer use his arms and legs; he needed help just to scratch an itch.
It was no way to live, and yet Pete was still living. He needed care – not just medical care but human care. He didn’t know why he was in this state or how long it had lasted. But he knew how he felt, he knew who his family was, and he knew whether they were there with him. So my mother-in-law would sit with her dad all day, for many days. She didn’t know if he had hours left, or months. She just knew he needed her and she could be there, so she was there. She learned it from her parents.
I remember that now whenever my kids are being too loud, pestering each other, or interrupting my work. One day, possibly sooner than I imagine, when my body has stopped working and I’m completely dependent with nothing left to give, these little people might be the only ones who will still sit with me.
These stories have been told many times before. Let’s all keep telling them.
To support efforts to treat and cure ALS, please visit ALS ONE to see how you can help.