In her absorbing début novel, Degrees of Difficulty, Julie E. Justicz offers a powerful, nuanced, and multidimensional portrayal of the struggles of caring for a profoundly disabled family member, and of the lasting consequences for everyone involved.
At the center of the novel is Ben Novotny, born with a chromosomal disorder that results in severe mental disability and a susceptibility to frequent, life-endangering seizures. Over the years, the demands of his care exact a steep toll on both of his parents, Caroline and Perry, but they react to the stress in markedly different ways.
Ever the optimist, Perry tries to hold on to hope that he might finally find a care facility to accept Ben, though Ben has been ousted from a run of them for acting out against other residents. As for Caroline, she becomes more and more exhausted and disheartened by the day-to-day struggles of caring for Ben, which leave her with little time or energy to advance her career as a literary scholar. Feeling helpless amid all the stress, she eventually turns to the Valium that she and other family members use to stop Ben’s seizures.
Like their parents, Ben’s older siblings, Ivy and Hugo, have starkly different responses to Ben and the responsibilities of caring for him. The prospect of having to address one of Ben’s seizures seems to terrify Ivy, and she does everything she can to keep her distance from him, aiming instead to excel at her studies in high school and beyond. In contrast, Hugo embraces his role as big brother and care provider for Ben, and the two of them form what seems to be the strongest bond in the family.
In chapters told from alternating points of view–Caroline’s, Perry’s, Ivy’s, and Hugo’s–Justicz writes with great empathy about each character’s experiences with Ben, and with the frustration, love, guilt, and self-judgment that caring for him–or seeking distance from him–inspires in them. In doing so, she conveys that there is no “right” strategy for coping with Ben’s ongoing needs and crises, and each family member must find their own way to face these challenges, while trying to move forward with their lives.
This proves to be a lonely, alienating, and ultimately divisive endeavor. When a devastating event (which I won’t reveal) turns the Novotnys’ lives upside down, it drives them apart even further as the years pass. Justicz writes with insight and compassion about each character’s journey over these years–about how they try to come to terms with the new reality and, if not heal, find a way to live with what’s broken inside them.
Justicz’s prose is often revelatory, especially in the scenes featuring Ben and Hugo and the connection between them. A top diver at his high school, Hugo trains for hours in his family’s pool, with Ben always in attendance. Ben is also present when Hugo competes in a state diving championship, after which Hugo makes this observation:
Passages like this–and there were many of them–haunted me, long after I’d closed the book.
Would My Pick be Your Pick?
If you're interested in ________, the answer may be "Yes":▪ Stories about family challenges or conflicts
▪ Stories about disability, or coping with it
