Every Note Played

In tracing Richard’s experience with ALS, Genova not only lays out the specifics of his condition in vivid detail but also touches on universal themes, including the struggle to come to terms with the unavoidable fact of death. Richard typically handles this struggle in one of four ways: denial, resentment, resignation, or acceptance.

Those who are diagnosed with ALS typically live about 30-40 months after the onset of the disease, and Richard falls within this range. As a progressive disease, the symptoms of ALS manifest only gradually at first, in a process that Richard likens to a “creeping metamorphosis” (142). Due to the subtle nature of his symptoms, Richard sometimes vacillates and questions their reality, severity, or trajectory, especially early on. On some occasions, he outright denies that he has ALS or that his symptoms will progress any further; Richard’s denial also surfaces in the form of fantasies that deliberately ignore his probable future. While denial effectively protects Richard from acknowledging the fact of his impending death, it comes at a cost. At some point, Richard is inevitably reminded of the truth, leaving him especially vulnerable to disappointment and discouragement after indulging in denial.

Another type of response to Richard’s condition involves various forms of resentment, which involves him lashing out bitterly at anything that forces him to acknowledge the truth of his condition. For instance, after Richard walks around his apartment one night, unable to interact with any of his possessions due to his failing arm strength, he feels an urge “to run, scream, cry, punch something, break something, kill something” (93). When he cannot open a wine bottle, he becomes frustrated and throws the opener across the room. This type of response, while understandable, tends to compound on itself, leading to more anger, self-pity, or other negative emotions that further reinforce themselves. Accordingly, Bill refuses to join Richard in any “pity parties” (99), considering them unhelpful.

A third type of response that Richard sometimes displays involves resignation. This involves reducing effort or engagement with life, using life’s brevity as an excuse. Richard employs this line of thinking when, for instance, he wonders to himself, “When will this next irreversible insult be inflicted? Tomorrow? Next week? End of the month? This summer? The answer is yes” (265). Here, the fatalistic tone of Richard’s language tends to produce fear and inaction.

Acceptance, by contrast, involves the acknowledgement that life is limited, both in quantity and quality, but it is followed by an affirmation and resolve to therefore maximize one’s engagement and participation. This does not mean that Richard is looking forward to death but rather that he allows himself to feel the full range of natural emotions while recognizing that his actions and choices still count for something. A mood of this kind of acceptance settles into the room as Richard and his guests listen to the recording of him playing at Carnegie Hall moments after he is disconnected from the hospital’s short-term ventilator: “He plays the final notes of Schumann’s Fantasie, slower, softer, hopeful, a whispered prayer to God” (289). While each of Richard’s responses are normal and natural, Genova portrays active, optimistic acceptance as an ideal worth striving for.