edited by Nell Casey; New York, HarperCollins, 2007, 277 pages, $24.95
Carla Jacobs is executive director of PLAN, a family organization in Tustin, California.
The book An Uncertain Inheritance, edited by Nell Casey, is not a pretty series of stories about selfless love. It is a fearsome—sometimes brutish, occasionally loathsome, but always honest—collection of essays by a band of professional writers who portray the raw emotions they individually experienced when someone they personally cared for became ill or died.
The writers' inheritances are memorials to the character failures and surprising strengths that may come at a time when there are no rewards. It's the gritty stuff that 30 million people experience every day looking after frail family members. It's the authors' acknowledgment that it is fallacious to believe that through responsibility and love one can overcome the messy inconvenience of illness and death.
"No, you and your love don't help me," novelist Helen Schulman quotes her physician father saying to her midpoint in his lengthy decline toward death. "I did not believe him then, but I believe him now," she writes in her essay, "My Father the Garbage Head." When his body became "some toxic, murky stew" 20 years after his original diagnosis, she and her brother would sit in a bar plotting his death: "It's agony watching him suffer," they told each other, "no one should live like that … we could use a pillow … we could go to jail … we could give him pills … that's murder … I don't want him to die … he doesn't want to die." Adds Schulman, "No one wants to die."
But sometimes people do want to die. Andrew Solomon led a seemingly charmed life. Graduating from Yale University magna cum laude in 1985, he would go on to write parts of Clinton's first Russia speeches. Yet brilliance and education do not trump depression. "I knew I had an essentially good life and that all this despair was folly … I found it frightening to be alive … If I had been able to think of a passive way to give up on life, I'd have done it in a flash," writes Solomon in his chapter, "Notes on Accepting Care."
A father's devotion—and good pharmacological intervention—saved Solomon. "Without his tender care, I would have found a place to lie down in the woods until I froze and died," he writes, "Even so I was angry at my father some of the time … I was enraged at the world and at fate and at my own brain, and my father was a handy outlet for this anger. While receiving care is a great deal better than not receiving care, it's a lot worse than not needing care."
Incongruous with the rest of the essays is "The Vital Role" by Amanda Fortini, a regular contributor to Slate magazine. Fortini was cared for (or taken advantage of) by a stranger who insinuated herself into Fortini's life. The stranger seemed to obtain a perverse pleasure in the role of caregiver. The chapter is a vital reminder of the vulnerability in illness or death.
Nell Casey comes by editing a collection of essays on caring honestly. From a family of writers, her previous bestselling essay collection, Unholy Ghost: Writers on Depression, includes separate accounts by her and her sister, Maud. Maud descended into bipolar disorder, requiring hospitalization and constant vigilance by Nell and their mother. Maud is now a bestselling author of fiction, and Nell Casey is a Carter Center mental health journalism fellow whose writing has appeared in the New York Times, Slate, Salon, Guardian, and Elle, among other publications.
An Uncertain Inheritance is invariably a well-written, courageous book. It is not an easy read. All the authors have been in close contact with death or chronic illness. Their caregiving is not objective or clinical. It is, as Scot Sea, the father of a 15-year-old girl with autism, describes "just the same scene from the same interminable clip on the late show from hell."