The Revised Fundamentals of Caregiving

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9781781851777: The Revised Fundamentals of Caregiving

LIFE-AFFIRMING STORY OF A DISABLED TEENAGER AND HIS CLUELESS CARER, NOW A NETFLIX DRAMA STARRING PAUL RUDD AND SELENA GOMEZ. The first rule of caring is Don't Get Emotionally Involved. So clueless carer Ben probably shouldn't have agreed to drive stroppy, wheelchair-bound teenager Trevor 400 miles across America to reunite with his deadbeat dad. Especially when Trevor's mother has absolutely forbidden it. Especially when a road trip like this could go so disastrously, gloriously wrong... Funny, life-affirming and beautifully bittersweet, this is the story of an unlikely friendship and the journey of a lifetime. 'Little Miss Sunshine meets Rain Man. Big-hearted and funny and full of hope' Boston Globe.

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Review:

Amazon Exclusive: Essay by Jonathan Evison

"Listen to me: everything you think you know, every relationship you’ve ever taken for granted, every plan or possibility you’ve ever hatched, every conceit or endeavor you’ve ever concocted, can be stripped from you in an instant. Sooner or later, it will happen. So prepare yourself. Be ready not to be ready. Be ready to be brought to your knees and beaten to dust. Because no stable foundation, no act of will, no force of cautious habit will save you from this fact: nothing is indestructible."

— from The Revised Fundamentals of Caregiving

The weekend of my sister’s sixteenth birthday, she took a road trip with some friends down to Lucerne Valley in the Mojave Desert. For two weeks prior, the trip was a source of debate around our dinner table. My old man reasoned that since she was a responsible kid, got good grades, fed her pets, and honored her curfew, she ought to be allowed to take the trip. My mother reasoned that it was a bad idea. She didn’t trust the other kids. They were a scraggly bunch.

My sister took the trip. She never came home. She was killed in a freak car accident the weekend she turned sixteen years old. The incident, the specifics of which have never been explained satisfactorily by anyone, all but exploded my family. My parents divorced after twenty-five years of marriage. I lost what amounted to my primary caregiver. My oldest brother was deeply depressed for two years afterward and was really never the same in some fundamental way. To this day, my family is still feeling the shockwaves. I’m still walking around with this sister-shaped hole in my heart. After a few beers, my brother will still lament the fact that he owed her seven bucks at the time of the accident. The seven bucks had been a point of contention involving the sale of a ten-speed bike. They argued fiercely about the money up until the day she left. At fifty-seven, my brother is still trying to pay that debt.

There are holes in our lives that can never be filled--not really, not ever. And yet, we have no choice but to try to fill them. We must drive on in the face of debilitating loss, crippling guilt, overwhelming hopelessness. Because to give up is to be dead. I’ve lived with this idea since I was five years old.

Ben Benjamin is a character who has lost virtually everything--his wife, his family, his home, his livelihood. Broken, stripped down, stricken, and without hope, Ben is a shadow of his old self. He has been a stay-at-home dad for nearly a decade, so the job market has all but passed him by. With few options, Ben registers for a twenty-eight-hour night class called The Fundamentals of Caregiving, where, in the sweltering basement of the Abundant Life Foursquare Church, Ben learns how to insert catheters and avoid liability. He learns about professionalism and how to erect and maintain certain boundaries, how to keep physical and emotional distance between the client and the care provider. He learns that caregiving is just a job. But when Ben finds himself assigned to a tyrannical nineteen-year-old named Trev, who is in the advanced stages of Duchenne muscular dystrophy, he discovers that the endless mnemonics and service plan checklists presented in his class have done little to prepare him for the reality of caring for a fiercely stubborn, scared, sexually frustrated adolescent with an ax to grind with the world at large.

When I set out to write this novel, I didn’t envision it as a road novel. I’ve never had a desire to write a road novel--in fact, I was very resistant to the idea. But the characters led me to the road. They left me no choice. They all but dragged me kicking and screaming to the road. It seemed Ben and Trev were always driving around in that van of Trev’s, but they were never getting anywhere. They were both stuck. They needed that van to deliver them somewhere--and I guess I needed it, too. Because that’s where this novel delivered me. The Revised Fundamentals of Caregiving is a story of total collapse, and ultimately, reconstruction. Before it is over, this calamitous journey will cover five states, resulting in one birth, two arrests, and one instance of cannibalism and including a dust storm, a hail storm, several shit storms, and a six-hundred-mile cat-and-mouse pursuit by a mysterious Buick Skylark.

Baggage is collected.

Hearts are won and lost.

Mistakes are forgiven.

Futures are realized.

This book represents nothing less than an emotional catharsis for its author. I wrote this book because I needed to. Because my sister went on a road trip thirty-nine years ago and never came back. And my family has yet to heal from this terrible fact. This novel is about the imperative of getting in that van, because you have no choice but to push yourself and drive on, and keep driving in the face of life’s terrible surprises. It’s about the people and the things you gather along that rough road back to humanity. And in the end, for me, The Revised Fundamentals of Caregiving is the van in which I finally bring my sister home.

About the Author:

Jonathan Evison's debut novel Lulu won the Washington State Book Award, and his second novel, West of Here, was a New York Times Bestseller. He lives on an island in Western Washington.

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