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.