Amyotrophic lateral sclerosis, or ALS, first became well-known in the United States in the late 1930s, when baseball great Lou Gehrig was diagnosed with the neuron disease. It went on to gain worldwide notoriety with the diagnosis of the late cosmologist Stephen Hawking. Perhaps you took part in 2014’s Ice Bucket Challenge, which went viral and brought a new level of public awareness to the condition. But do you really know the ins and outs of this horrific disease, and what it can do to a person or a family? In EVERY NOTE PLAYED, bestselling author Lisa Genova tells the story of a brilliant pianist who is diagnosed with ALS at the height of his career, and the ways this disease brings his family together.

Richard has dedicated his entire life to the piano and the classical tunes of Bach, Chopin and Schumann. Although he married and had one daughter, nothing could ever fill his heart in the same way as the ivory keys. But when we meet Richard as he is performing for an audience in Miami, he is distracted and disconnected from the music. He has just been diagnosed with ALS, and the entire key of his life is about to change.

Leaving the stage, we arrive in suburban Boston one year later, where Richard’s ex-wife, Karina, is racing to one of her students’ graduation parties. Like Richard, Karina is a pianist, but where he has chosen the stage, she has chosen motherhood, the home and half-hour lessons with local children trying to bolster their college applications. Karina and Richard have been divorced for years, with his rockstar-like infidelity playing a huge role in their marriage’s demise, but it is clear that there is more to the story than a few lust-filled nights. It is at the party that Karina learns of Richard’s disease.

"[I]n true Genova fashion, EVERY NOTE PLAYED is as full of hope as it is of heartbreak. Undoubtedly this is a book that will make you cry, but it also will make you think of ALS and its victims long after you have finished reading."

Through Karina’s eyes, we learn that Richard is not exactly a saint. He is arrogant, self-absorbed and a bit narcissistic. Whereas some authors might craft a perfect, sympathetic character to hurl into the storm of ALS, Genova takes a far more interesting path. Richard is not someone the reader might like to date, marry or even be friends with, but there is something deeply sad about watching this concert performer lose his only talent, his only means of supporting himself and his only love.

Along with Richard, we watch as the disease begins to take its hold, killing off his neurons one by one, limb by limb. He is certainly in denial, but he is still a fighter. When he loses one hand, he finds a piece crafted specifically for a one-handed player and learns it to perfection, performing alone in his apartment in a full tuxedo. The image is grotesque in its humor and desperation. Richard is admirable yet pitiable.

Before long, Richard can no longer manage his days even with the help of visiting nurses. Karina, still in disbelief that he could even be ill, realizes there is only one answer: he must return to their former home, and she must help care for him.

If you think this is gearing up to become a cheesy romance where two disgruntled former lovers return to the passion they had as youths, forgiving all of the indiscretions of the past, you could not be more wrong. Genova crafts a much more elegant storyline, giving her readers a nuanced yet crushingly realistic look at illness, marriage and the process of dying. As Richard becomes sicker and weaker, needing help with everything from his morning urination to breathing in his sleep, Karina remains responsive yet distant. She goes through the motions, certainly, but there is no warmth between the two. It pains her to see him so ill, but like any caretaker, she begins to suffer from compassion fatigue.

Of course, this would not be a Lisa Genova book if we did not get a stark, painful look into Richard’s mind as well. As his days become longer and less meaningful, we bear witness to every minute of his boredom, anxiety and desperation. Whether he is writing letters to his father that he will never send, or grappling with how to apologize to his daughter for being an absent father, no thought of Richard’s goes unexplored. Drawing upon her experience as a neuroscientist, Genova describes what is happening to Richard in clear, vivid detail, but she is never cold in her delivery. I was particularly fascinated by her description of voice banking, a process through which a patient can record personal phrases and messages to play when his or her voice no longer works. Her juxtaposition of scientific detail with compassionate, heartfelt storytelling is unparalleled, and makes for an educational yet deeply emotionally satisfying read.

There is also a real love of music present in this wonderful book. I was often reminded of my own childhood piano lessons and the joy of “tickling the ivory keys,” as Richard would say. Throughout the novel, Richard returns again and again to Schumann’s Fantasie in C Major, and when I finally listened to it, I felt even more connected to this flawed but sympathetic character. I highly recommend keeping some classical music on standby as you’re reading.

That said, I did find the pacing to be a bit jumbled. Perhaps Genova was attempting to mimic the pacing of the disease itself, with its incremental losses and punctuations of relief. I would have liked to see more of Richard’s and Karina’s stories, and particularly to have been given greater insight into their failed marriage. Of course, I raise this criticism only because Genova has written such memorable characters that I wanted to continue to love, rage and grow with them for longer than the mere 300 pages I was given.

If you are familiar with ALS, you know that Richard’s story cannot end well. But in true Genova fashion, EVERY NOTE PLAYED is as full of hope as it is of heartbreak. Undoubtedly this is a book that will make you cry, but it also will make you think of ALS and its victims long after you have finished reading. That is the power of a Lisa Genova novel: to raise awareness and hope through compassionate storytelling, raw science and a tremendous amount of love.