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Book World: ‘Revised Fundamentals of Caregiving’ is a journey back to life

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Jonathan Evison’s new novel, “The Revised Fundamentals of Caregiving,” sounds like it’s about as much fun as cleaning a catheter. And that long, textbooklike title — an actual 28-hour course required for people who work in adult family homes in Washington state — is just the book’s first turnoff. The plot involves a young man wasting away from muscular dystrophy. The narrator is bankrupt, depressed and being sued for divorce. His two dead children hover in the background.

I ate it up.

More than 20 years ago, when my first daughter was born with cerebral palsy, my wife and I were plunged into that netherworld of home health care. I’ve since learned that there are lots of us. Tens of millions of us, actually, somehow holding down full-time jobs and cobbling together what looks like a normal life. We rely, precariously, on personal care aides, the fastest-growing occupation over the next decade, according to the Labor Department. They’re usually poor, female and, in my experience, recent immigrants, making less than fast-food workers. The good ones adored our daughter, read her books and enjoyed singing to her. The bad ones stood on the patio smoking cigarettes and talking on the cellphone until it was time to leave.

Evison’s bittersweet novel is about one of the good ones: no Florence Nightingale, just a witty, brokenhearted man who needs a job. He’s not perfect, and neither is this novel, but it’s moving and funny, and, my God, how refreshing it is to read a story about someone caring for a disabled person that isn’t gauzed in sentimentality or bitterness. Among his several odd jobs, Evison once worked as a personal care attendant himself, and this novel is dedicated to one of his clients. The experience seems to have taught him just what true caregiving is all about, and that insight along with his plaintive sense of humor had me alternately chuckling and wiping my eyes through much of his book.

The hapless narrator of “Revised Fundamentals” is Ben Benjamin, who’s just emerged from 18 months of blinding grief. His wife has left him, and his house has been repossessed. “Immobility is slowly draining the life out of me,” he says, “like a car left to sit in the driveway too long.” At 39, he knows he’s not qualified to do much. He’s sold muffins, worked at a bookstore, painted parade floats. “I’m just pathetic,” he says at the start of what I worried would be another whiny-man novel.

“What led you to caregiving?” a potential client asks him.

“I’m a caring person,” he says. “I understand people’s needs.”

“Why do you wanna work for nine bucks an hour?”

“I’m broke.”

Despite that candor, Ben gets a job caring for 19-year-old Trev, who uses a wheelchair and lives with his mom. The young man is twisted and shrunken by the effects of MD (“103 pounds at his last checkup”), but Ben sees “a pretzel with a perfectly healthy imagination.” Warily, the two men strike up a friendship within the narrow confines of Trev’s abilities. They watch a lot of the Weather Channel and rate the weather girls’ breasts. They plot wacky roadside attractions on a giant map of the United States (the Spam Museum, the Two Story Outhouse, etc.). And much of their time is taken up with the arduous demands of caring for someone who can’t shower or use the bathroom by himself. The work is dull, embarrassing, icky. This is a kind of intimacy most people don’t see much of in life — or fiction. (There’s also some macabre caregiver humor here that only we caregivers will get.)

But Ben doesn’t focus on the latex gloves and plastic vessels, and soon neither do we. He’s caught up in the larger problem of being: How will he live in the shadow of his own unspeakable loss and move beyond “the bitter spoils of self-pity”? And how will he encourage a young man whose short future stretches toward the horrors of a degenerative disease?

Fortunately, Evison isn’t willing to cheat on these problems: Trev isn’t cured by the end; unlike Job, Ben doesn’t get a new, better family. But the novel does resort to a road trip that rolls the story in the direction of an indie-film cliche. And there are madcap chases and buffoonish arguments that seem to have waddled in wearing clown shoes from a much cornier novel. Although the winding trek to Salt Lake City in an old van gives the story some changing scenery and quirky new characters (Ellen Page, call your agent), it obscures the gently handled relationship that Ben and Trev had established in his home.

Still, this is a far more focused plot than Evison presented in his previous novel, “West of Here,” an entertaining but hysterically overpopulated story about the development of Washington’s Pacific coast. Here, the cast is manageable and dominated by desperate men who have “made a hopeless mess out of fatherhood.” They’ve all failed their children in disastrous ways, none more so than Ben. As he and Trev and their growing ragbag of passengers drive around the Northwest, we get flashbacks to Ben’s life with his son and daughter, “the blessed disorder” of parenting with all the dirt and sugar and sweat that involves. Overshadowed by their deaths, these quirky scenes have an even more wrenching charm. For many chapters we don’t know exactly what happened to his kids, but Ben keeps torturing himself with recriminations. The outlines of that unspeakable moment grow sharper and sharper until the brief description toward the end is so fraught with dread and agony that it’s difficult to read.

There’s a risk, of course, in trying to situate an event of such tragic magnitude in a novel that includes scenes of broad comedy and snarky wit. Anne Tyler kept her emotional range far more controlled in “The Accidental Tourist,” a masterpiece of parental grief that makes “The Revised Fundamentals of Caregiving” look like a jalopy in comparison. But Evison has such scruffy charm that, as his story bounces along, it’s easy to forgive him the rough spots.

Charles is The Washington Post’s fiction editor. Find him on Twitter: @RonCharles.

The Revised Fundamentals of Caregiving By Jonathan Evison Algonquin. 278 pp. $23.95

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