A graphic memoir by an author best known for her children’s books details the devastating effects of her husband’s amyotrophic lateral sclerosis on her entire family.
Though Moss has sold millions of books—particularly the Amelia’s Notebook series—she explains in the acknowledgments that “this book wasn’t easy to sell. Many agents and editors felt it was too dark or sad.” It is both of those, as the author subverts the stereotype of the noble caregiver and the patient whose fatal illness teaches everyone about the true meaning of life. Moss offers no clichéd heroism. “We’re told that major illness deepens us, makes us grateful for our lives,” she writes. “But for me, ALS doesn’t work that way. I’m not a bigger, nobler person and neither is [my husband] Harvey.” When Harvey received his diagnosis and quickly saw his health decline, he seemed to resent his wife’s attempts to help him or be closer to him. And she resented him back, not only for the impositions his illness made on her and his lack of appreciation, but for the way it altered the dynamic of the entire family. “But it’s not his disease,” she maintains, after he decreed that he would notify their children. “It’s rotting away at all of us,” writes Moss. “First it killed our marriage. Now it’s destroying our family. And then Harvey will die. What will be left of us?” Instead of the concern for Harvey that one would expect as a focus, the author is brutally honest about how hard she took his illness and how it affected her. There are brief flashes of a return of intimacy and connection between them—and sessions with a therapist provided some perspective—but it seems that only after his death could she truly reconnect with the husband she loved.
When Moss writes, “this isn’t how it’s supposed to be,” other readers who aren’t feeling what they’re supposed to be feeling could well find comfort in a kindred spirit.