Benjamin Benjamin has lost virtually everything—his wife, his family, his home, his livelihood. With few options, Ben enrolls in a night class called The Fundamentals of Caregiving taught in the basement of a local church. There Ben is instructed in the art of inserting catheters and avoiding liability, about professionalism, and how to keep physical and emotional distance between client and provider. But when Ben is assigned to nineteen-year-old Trev, who is in the advanced stages of Duchenne muscular dystrophy, he discovers that the endless mnemonics and service plan checklists have done little to prepare him for the reality of caring for a fiercely stubborn, sexually frustrated adolescent. As they embark on a wild road trip across the American West to visit Trev’s ailing father, a new camaraderie replaces the traditional boundary between patient and caregiver.
Bursting with energy, this big-hearted, soulful, and inspired novel ponders life’s terrible surprises and the heart’s uncanny capacity to mend and become whole again.
Release date:
August 25, 2015
Publisher:
HarperAvenue
Print pages:
304
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“With its extremely cinematic plot and collection of quirky scenes, the novel might remind you of Little Miss Sunshine meets Rain Man . . . The Revised Fundamentals of Caregiving is even-keeled, big-hearted, and very funny, and full of hope. Through Ben, missteps are made, and human foibles are exposed. But we also glimpse that distant shore of hard-earned redemption. For that, Evison’s novel is worth the voyage.” —The Boston Globe
“Allow me to add my voice to the chorus of praise that has greeted The Revised Fundamentals of Caregiving . . . Grimly hilarious, and the novel culminates with a classic road trip across the American West. Mr. Evison injects a wonderful amount of feeling into those empty highways and dingy rest stops.” —The Wall Street Journal
“An entertaining picaresque and a moving story of redemption.” —The New Yorker
“Evison is one of the sharpest writers around, and proves it in pretty much every line of this funny, brassy, unflinching tale . . . Nothing sentimental about this book, just good, honest, punch-to-gut emotion, with amazing adventures and revelations along the way. You’ll get your heart broken several times over in this book, and yet, if you’re like me, you’ll end it with a full heart and a heavy sigh, and maybe a smile. How did he do that? Dunno, but I’m damn glad he did.” —Ben Fountain, for The Millions
“[An] engaging book . . . The journey is reckless and wild, infused with the sad rage that makes good comedy great . . . As this carload of misfits moves east, relationships are broken and forged, and Ben recreates a kind of family. This could be horribly clichéd and yet it isn’t, because Evison never bows to what we expect from happy endings.” —Jennifer Gilmore, The New York Times Book Review
“Heartbreaking . . . Evison can be a skillful, compassionate writer who effortlessly evokes a range of characters, from Trevor’s no-nonsense mother to Ben’s terminally furious ex . . . The relationship between Trevor and Ben blossoms into a thing of strange beauty.” —Jennifer Weiner, NPR.org
“[A] funny, moving novel.” —The New York Times Book Review, Editor’s Choice
"Revised Fundamentals of Caregiving is a journey back to life . . . 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 . . . 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.” —Ron Charles, The Washington Post
“Sly and surprising, The Revised Fundamentals of Caregiving is both a goofy road trip and a mission of atonement. Jonathan Evison has the singular ability to make the heartbreaking seem jaunty.” —Stewart O’Nan, author of The Odds: A Love Story
“The comic novel may be the hardest work of fiction to pull off well . . . The Revised Fundamentals of Caregiving is a showcase of what makes a good one tick: Characters just a touch disconnected from reality, a prevailing sense of life’s absurdity and a handful of rude jokes . . . Evison proves that some of the best comedy emerges from lives that have jumped the rails.” —Minneapolis Star Tribune
“Luminously moving and very funny.” —The Rumpus
“Evison is a gifted raconteur with a wicked sense of humor and an unflagging empathy for humankind in all its sad, foible-filled magnificence. In The Revised Fundamentals of Caregiving, his myriad talents are displayed in full bloom.” —Patrick deWitt, author of The Sisters Brothers
“An inspiring tale on life’s surprises and the heart’s capacity to mend, filled with a perfect blend of humor and sadness.” —ExpressMilwaukee.com
“A story of heartbreak and healing . . . This is a novel with a terrific sense of the relationship between comedy and tragedy.” —The Daily Beast
“Evison’s third and most stealthily powerful novel . . . [is] a book so poignant yet improbably funny . . . [An] adventurous story.” —Janet Maslin, The New York Times
“The wildly beating, ragingly funny heart of Evison’s new novel blazes through a landscape of grief, tragedy, and yup, even hope. Dazzlingly told and deeply felt, it nudges us toward an understanding that love is precarious, that disaster can earthquake us, and that caring is always worth the cost.” —Caroline Leavitt, author of Pictures of You
“Evison’s first-person narration is warm, funny and inviting . . . We learn, along with Ben, that while we can’t escape tragedy, we shouldn’t let that stop us from seeking joy and hope where it can be found. ‘I’ll never stop caring,’ he says, and he invites us to keep caring, too.” —The Kansas City Star
“Really funny . . . Ben and Trev hit the road, and Caregiving takes off with them . . . The real point of this excellent adventure is the trip itself.” —Milwaukee Journal Sentinel
“Any reader who has found caring for others difficult or burdensome or even near impossible will find Ben Benjamin’s story riveting and hard to put down.” —BookBrowse, Editor’s Choice
“The Revised Fundamentals of Caregiving is the funniest and most tough-minded novel I’ve read in a long time. Jonathan Evison is a great lyrical talent who deserves to be better known, and this is his best novel yet. You owe it to yourself to read it.” —Darin Strauss, author of Half a Life
“Laced with the wit and energy that have become his trademarks, of course—but along the way it takes an up-close look at tragedy, loss, guilt, and ultimately redemption . . . The Revised Fundamentals of Caregiving immerses you in the trials of its protagonists, turning itself into one of the year’s least likely—but most successful—page-turners.” —CultureMob
“Evison’s brand of feel-good storytelling comes from life’s trenches, where hope and humor must endure in the face of despair.” —Fort Worth Star-Telegram
“Smart and bittersweet and attuned to the absurdity of life? Evison’s book is the literary version of a good grunge song.” —LA Weekly
“Evison manages to find considerable humor in this plaintive story of care giving and receiving . . . A lively narrative with a poignant core and quirky, lonely characters.” —Kirkus Reviews
“[Evison] can be funny like nobody else, about things few other writers would risk laughing about.” —The Onion, A.V. Club
“Evison has given us a salty-sweet story about absorbing those hits and taking a risk to reach beyond them. What a great ride.” —The Seattle Times
“A cathartic novel that will leave readers breathing a heavy sigh of pleasurable release. Its offensive at times, witty, funny and an excellent example of modern realism . . . Your eyes will sting from laughter at the dark, unforgiving humor. You won’t have any regrets.” —The Missourian
“This book is anything but downbeat. Despite the loss and grief in its soul—and make no mistake, they’re there—this is a briskly paced, wryly wise and often laugh-out-loud funny road novel with a heart that is warm without being sentimental.” —Tampa Bay Times
“Although the premise of taking a road trip in a handicapped-equipped van with a boy in a wheelchair doesn’t usually herald fun and adventure, that’s exactly where the story goes. The author’s sense of humor and his obvious empathy for others makes this an unusual and entertaining story.” —The Oklahoman
“A zany road trip from grief to grace . . . [A] sometimes funny, sometimes slapstick, big-hearted novel . . . We readers want to go along for the ride, to follow the detours and adventures, to encounter new people, and Evison’s novel delivers.” —The Oregonian
“Funny, humane and a lot of fun.” —St. Paul Pioneer Press
“Jonathan Evison doesn’t write his characters so much as channel them?deeply and with heartbreaking honesty. I’ve read few novels that tell their stories with such a successful balance of tenderness and grit.” —Mark Dunn, author of Ella Minnow Pea
hooked on mnemonics
I was broke when duty called me to minister to those less fortunate than myself, so maybe I’m no Florence Nightingale. And maybe in light of all that happened with Piper and Jodi, I’m not qualified to care for anybody. The fact is, at thirty-nine, with a gap in my employment history spanning the better part of the technological revolution, I’m not qualified to do much anymore.
But don’t get the idea that just anyone can be a caregiver. It takes patience, fortitude, a background check. Not to mention licensing and a mandatory curriculum of continuing education, as evidenced by my certificates in Special Needs in Dementia 1, Positive Crisis Management, and Strategies in Nonverbal Communication. The bulk of what I learned about being a licensed caregiver, I learned from the Fundamentals of Caregiving, a twenty-eight-hour night course I attended along with fourteen middle-aged women at the Abundant Life Foursquare Church right behind the Howard Johnson in Bremerton. Consuming liberal quantities of instant coffee, I learned how to insert catheters and avoid liability. I learned about professionalism. I learned how to erect and maintain certain boundaries, to keep a certain physical and emotional distance between the client and myself in order to avoid burnout. I learned that caregiving is just a job, a series of tasks I’m paid to perform, as outlined in the client’s service plan, a binding care contract addressing everything from dietary constraints, to med schedules, to toiletry preferences. Sometimes, that’s a lot to remember. Conveniently, the Department of Social and Human Services has devised dozens of helpful mnemonics to help facilitate effective caregiving. To wit:
Ask
Listen
Observe
Help
Ask again
I had a head full of these mnemonics and a crisp certificate when, three days after I completed the course, the Department of Social and Human Services lined me up an interview with my first potential client, Trevor Conklin, who lives on a small farm at the end of a long rutty driveway between Poulsbo and Kingston, where they do something with horses—breed them, sell them, board them. All I really know is, that Trevor is a nineteen-year-old with MS. Or maybe it’s ALS. Something with a wheelchair.
I’ve got one more cash advance left on the old Providian Visa before I’m cashing out the IRA, which will only yield about fifteen hundred after penalties. For a year and a half after the disaster, I didn’t even look for work. All told, I can hold out another month before I’m completely sunk. I need this job. My last job interview was eleven years ago, before Piper was born, at the Viking Herald, a weekly gazette devoted primarily to Scandinavian heritage, pet adoptions, and police blotters. The Herald was hiring an ad sales rep at the time—a telemarketing gig, basically. I met with the head of sales in his office at the ass end of new business park on the edge of town. Right away I forgot his name. Wayne. Warren. Walter. Not so much a salesman as a miscast folk singer, someone you might find strumming “Tom Dooley” in the shadow of a cotton-candy stand on a boardwalk somewhere.
“Have you ever sold anything?” he asked me.
“Muffins,” I told him.
I didn’t get the job.
This morning, I’m wearing one of the button-down shirts my estranged wife, Janet, bought me five years ago when it looked as though I’d finally be rejoining the workforce. Never happened. We got pregnant with Jodi instead.
I arrive at the farm nine minutes early, just in time to see whom I presume to be one of my job competitors waddle out the front door and down the access ramp in sweat pants. She squeezes herself behind the wheel of a rusty Datsun and sputters past me up the bumpy driveway, riding low on the driver’s side. The sweatpants bode well, and even with three missing hubcaps, my Subaru looks better than that crappy Datsun.
The walkway is muddy. The ramp is long like a gallows. I’m greeted at the door by a silver-eyed woman roughly my own age, maybe a few years older. She stands tall and straight as an exclamation point, in bootleg jeans and a form-fitting cotton work shirt. She’s coaxed her flaxen hair into an efficient bun at the back of her head.
“You must be Benjamin,” she says. “I’m Elsa. Come in. Trevor’s still brushing his teeth.”
She leads me through the darkened dining room to the living room, where a tray table on wheels and a big-screen TV dominate the landscape. She offers me a straight-backed chair and seats herself across from me on the sofa next to the reclining figure of an enormous brown cat showing no signs of life.
“Big cat,” I say.
“He’s a little testy—but he’s a good ratter.” She pets the cat, who bristles immediately. She strokes it until it hisses. Undaunted, she forges on until the beast begins to purr. I like this woman. She’s tough. Forgiving. The kind that sticks it out when the going gets rough.
“My neighbor has a cat,” I offer.
“What a coincidence,” she says. “So, tell me, do you have any other clients?”
“Not at the moment.”
“But you have experience caregiving, right?”
“Not professionally.”
She’s unable to suppress a sigh. Poor thing. First the lady in sweatpants, now me.
“But I’ve worked with kids a lot,” I say.
“Professionally?”
“Not exactly.”
“Do you have children?”
“No. Not exactly.”
She glances at the clock on the wall. “Do you mind if I ask what led you to caregiving?” she says.
“I guess I thought I might be good at it.”
“Because . . . ?”
“Because I’m a caring person. I understand people’s needs.”
“Do you know anything about MD?”
“A little bit.”
“And what did you think of the class?”
“Honestly?”
“Honestly.”
“I thought it was . . . uh, pretty informative.”
“Hmm,” she says.
“I mean, a lot of the stuff was common sense, but some of it was pretty eye-opening in terms of, you know . . . just different methods and approaches to . . .” I’ve lost her.
“Benjamin, I’ve taken the class,” she says.
At last, Trevor wheels into the living room, a good-looking kid in spite of an oily complexion and a severe case of bed head. He’s sporting khaki cargoes, a black shirt, and G-Unit low-tops. The disease has left him wafer thin and knobby, slightly hunched, and oddly contorted in his jet black wheelchair.
“Trevor, this is Benjamin.”
“You can call me Ben.”
He shifts in his seat and angles his head back slightly. “What’s up?” he says.
“Not much,” I say. “How about you?”
He shrugs.
“Trevor is looking for a provider he can relate to,” Elsa explains. “Somebody with similar interests.”
“So what kind of stuff are you into?” I say.
His hands are piled in his lap, his head lowered.
“He likes gaming,” says Elsa.
“What games?” I say.
“Shooters, mostly,” he mumbles.
“Oh, right, like, uh, what’s it called—Mortal Combat?”
He rears his shoulders back, and hoists up his head, moving like a puppet. “You play?”
“No. A guy on my softball team is always talking about it.”
He lowers his head back down.
“Tell Ben about some of your other interests,” says Elsa.
The instant she calls me Ben, I feel like I’ve gained some small bit of ground.
“Yeah, what else are you into?”
Trev shrugs again. “I don’t know, not much.”
“He likes girls,” says Elsa.
“Shut up, Mom,” he says. But she’s managed to coax him out of his shell. For the first time, he looks me in the eye.
Elsa rises to her feet. “I’ll leave you two to get acquainted.” And without further comment, she strides across the living room and through the dining room.
After a moment of awkward silence, Trevor whirs closer to his cluttered tray table.
“So,” I say. “Girls, huh?”
He casts his eyes down, shyly, and I wish I could take it back. Poor kid. Bad enough he’s all twisted in knots—people are always putting him on the spot, pushing him out of his comfort zone, pretending that everything is normal, as though he can just go out and get a girlfriend, ride the Ferris wheel with her, and feel her up in the back of a car. Look at him, staring into his lap, wishing he could disappear, wishing everybody would quit pretending. But it’s all just a ruse. Because when he lifts his head again, he swings his chair round clockwise and checks the doorway. Jockeying back around, he smiles and looks at me unflinchingly. There’s a glimmer in his eye, a flash of the evil genius, and I understand for the first time that I may be dealing with someone else entirely.
“I’m crippled, not gay,” he says. “Of course I like girls.”
I check the doorway. “What kind of girls?”
“Any kind,” he says. “The kind who want to get with a guy like me.”
“You mean because of your . . . because of the wheelchair?”
“I mean because I’m horny. But yeah, that too. Do you have a wife?”
He leans in conspiratorially. “Would she get with me? Do you think she’d get with me?”
“Uh, well, um . . .”
“I’m joking,” he says. “Why do you wanna work for nine bucks an hour, anyway?”
“I’m broke.”
“You’re gonna stay broke working for DSHS.”
“Does this mean I’ve got the job?”
“Sorry, man,” he says. “But I haven’t met all the candidates yet. I like you better than the fat lady, though.”
CLIMBING INTO MY car after the interview, my hopes are buoyed by the sight of a dented white Malibu bumping down the driveway as another candidate arrives from DSHS. The front bumper is all but dangling. The tabs are expired. The guy behind the wheel has a spiderweb tattoo on his neck.
the pro
Now, four months after the interview, I spend anywhere from forty to sixty hours a week with Trev. We’re way past the awkward toiletry stage. Beyond the honeymoon stage. I’ve been Asking, Listening, Observing, Helping, and Asking again for sixteen weeks, a gazillion waffles, eight trips to the shoe store, endless hours of weather-related programming. I passed the burnout stage about three months ago. That’s not to say I don’t like Trev—I do, tyrannical streak and all. I feel for him.
His father ran off when he was three years old, two months after he was diagnosed. Funny how that works. Trev is currently enrolled in the college of life, though his mom is encouraging him to take community college classes. Elsa ought to wear a cape. She runs the farm sixteen hours a day, makes dinner, cleans house, and still finds quality time for her son. She sleeps about three hours a night, and even then, she’s up every half hour to turn Trev.
It’s not MS or ALS but Duchenne muscular dystrophy tying Trev in knots, twisting his spine and tightening his joints so that his ribs all but rest on his hips now. His legs are bent up toward his stomach and his feet point downward and his toes curl under, and his elbows are all but locked at his sides. A pretzel with a perfectly healthy imagination. But I’m not going to ennoble Trev just because he’s looking death in the eye. Really, what choice does he have? We’re all dying, Trev’s just dying faster than most. But I’ve seen faster—a lot faster. The truth is, for the last month or so, at least half the time, I’m downright annoyed that Trev doesn’t take more risks, that he willfully imprisons himself inside of his routines, that he consumes life by the measured teaspoon. And for what? So he can milk a few extra years watching the Weather Channel three hours a day, eat a few hundred more flaxseed waffles? Piper should have been so lucky. Jodi should’ve had such opportunities. Sometimes I want to let Trev have it.
Aren’t you tired of doing the same ten things over and over! I want to say. The waffles, the Weather Channel, the mall and the matinee on Thursday? Don’t you ever just want to free yourself from your compulsive routines, and go out in a blaze of glory? Or at least order something besides fish-and-chips every single time we go to the Lobster!
But of course, I never do these things, or say these things. Because in spite of the burnout, I still cling to my professional credo:
Professional
Reliable
Objective
According to the Fundamentals of Caregiving, Trev doesn’t need to know what happened to my daughter or my son or why my wife left me or how I lost my house. Or how I contemplated killing myself as recently as last week but didn’t have the guts. My guilt, my self-contempt, my aversion to other people’s children, Trev doesn’t need to know about any of them. Trev needs only to know that I am here to serve his needs. Try spending sixty hours a week with one person under these circumstances. Everything about him will bug you before long. Once you’ve recognized all his quirks and idiosyncrasies, once you can predict (or think you can predict) his actions and reactions, he’ll start to drive you crazy. Once you’re forced to endure his routines time and again, you’ll want to strangle him. For instance, Trev’s very particular about his shoes. All his pants are khaki cargoes and all his shirts are identical black tees with a left-breast pocket (which is annoying in itself). Even his boxers are an identical royal blue, as though by dressing the same every day, he might stop the clock or at least sneak a few extra days under the radar. But his shoes are a different matter entirely. He buys a new pair at the mall on the second Thursday of every month and aligns them (that is, I align them) neatly on three shelves running the length of his double closet: footwear for every conceivable occasion. Shoes are a morning ritual. Even before the five pills, the two waffles, the eight-ounce Ensure with the bendable straw, even before the Weather Channel informs him of the weather he’s not likely to venture out into.
“What’ll it be today?” I’ll say.
“I don’t know.”
This is my cue to start Asking, to start Listening, to start Observing. “What about the white Chucks?” I’ll say.
“Nah.”
“Black Chucks?”
“Nuh uh.”
“Docs?”
“Nah.”
“The All Stars?”
“I don’t think so.”
Round and round we go. I reel them off. He declines them. It’s our daily exercise in independence, something I might have done with Piper when she was four years old.
Thursdays are something of a highlight, particularly that hour before the matinee, when we come to the food court at the mall to ogle women. Few spectacles are more conspicuous and ungainly than the masculine figure in crisis. Trev, at least, has youth in his defense. I’m just pathetic, I guess. From our preferred vantage opposite Cinnabon, we objectify, demystify, belittle, and generally marginalize the fair sex, as though we weren’t both completely terrified of them.
“Look at the turd-cutter on her,” he says, of a poodle-haired blonde in tight jeans. “Would you tap that?”
“In a heartbeat,” I say.
Lolling his head to the side, he looks me in the eye. “I’d give her a Gorilla Mask.”
“I’d give her a Bulgarian Gas Mask,” I counter.
“I’d give her a German Knuckle Cake.”
“That’s fucked up,” I say.
“Thanks,” he says. “Should I ask her out for a pizza and a bang?”
“A bang and a pizza.”
“How about just a bang?”
“No, trust me, the pizza part is classy.”
Poodle Hair breezes by toting two Cajun corn dogs and some curly fries, with a boyfriend trailing in her perfumey wake. They take a table in front of Quiznos and begin eating. . .
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