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If I’m going to be honest with myself, financial necessity delivered me to my present occupation as a caregiver more than any humanitarian impulse. I was broke when duty called me to minister those less fortunate than myself, so maybe I’m no Florence Nightingale.

But I’m wiping butts.

That seems like the important thing.

Don’t get the idea that anyone can be a caregiver. The state requires certification classes. Everything I learned about proper caregiving, I learned from The Fundamentals of Caregiving, a twenty-eight hour night course I attended at the Abundant Life Foursquare Church right behind the Howard Johnson’s in Bremerton.

There, in the impossibly stuffy environs of a church basement, accompanied by the belching of an ancient radiator, I consumed liberal quantities of instant coffee with non-dairy creamer as I (along with fourteen middle-aged women), learned how to insert catheters and avoid liability. But mostly 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.

Trev is my only client. I spend anywhere from twenty to thirty hours a week with him.

We eat together, shop together, and even go to the bathroom together, sort of. He’s twenty years old and currently unemployed and doesn’t really want to go to college. Trev’s already enrolled in the college of life. He still lives with his mother, who juggles three jobs and ought to wear a cape.

His father ran off when he was three years old, two months after Trev was diagnosed.

Funny how that works.

There are a thousand questions I’d like to ask Trev– Are you scared? Are you bitter? Why not?— but somehow I can’t. Perhaps because my professional credo forbids it. If I should overstep my boundaries, I need only recall this helpful mnemonic:

Professional

Reliable

Objective

Or this one:

Honor

Encourage

Listen

Provide

If there’s one thing you should know about Trev before I tell you anything else, it’s that he’s very particular about his shoes. The shoes make the man, he insists. He’s not so particular about his shirts and pants. In fact, all his pants are green and all his shirts are blue. But not his shoes. His shoes are a different matter entirely. They’re aligned neatly on three shelves running the length of his double closet: footwear for every conceivable occasion, from clam digging to salsa dancing. He even has cleats.

Shoes are the nexus of our morning ritual.

“What’ll it be for shoes today?” I’ll say. “Wingtips?”

“Nah.”

“What about the white Chucks?”

“Not after Labor Day.”

“Docs?”

“They don’t breathe.”

“Beatle boots?”

“Not in the mood,” he’ll say.

I reel them off. He declines them. It’s our daily exercise in independence.

Shoes_closet

Trev has never salsa danced. The fact is he stopped walking ten years ago. Duchenne Muscular Dystrophy is tying him in knots, twisting his spine and tightening his joints so that his ribs all but rest on his hip bones now, and 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.

“Look at the turd-cutter on her,” he says. “How would you like to throw a snot on that?”

“Hell yes,” I say. “I’d tap that. But I could do without the poodle hair.”

Poodle_hair_2

We’re sitting in the food court at the mall, where we’ve come for the express purpose of engaging in such hypotheticals. We never eat here; we always eat up the hill at Red Lobster. We just come here for the sights.

Tall ones, fat ones, black ones, brown ones. Trev and I are both a little girl crazy. Me, because no matter how hard I try I can’t forget the thrill of being sheltered in Molly’s arms, and Trev, I suppose, because he’s yet to taste the thrill. But we never really discuss it in those terms.

“Would you bang her?” I say.

“Sure, I’d bang her.

“You think you could handle all that woman?”

“What do you think?”

“I’m asking you.”

“Should I ask her out for a pizza and a fuck?” he says.

“A fuck and a pizza,” I say.

“How about just a fuck?”

“No, the pizza’s classy. Trust me.”

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 together silently, as though they’d been eating together their whole lives. I’ll bet Molly and I used to look like that when we ate together. I know we were silent, anyway.

“What is she doing with him?” says Trev. “What a tool.”

I wave them off. “Screw it. She’s probably a psycho.”

“Yeah,” he says. “Probably.”

We lapse into silence, alone with our hypotheticals.

I once asked Trev what he’d do if he awoke one morning with all of his muscle functions, which is about as hypothetical as it gets since his condition is progressive and incurable. I was thinking: climb a mountain, run a marathon, chase a butterfly down a hill.

He said: Take a piss standing up. He grinned, but he was serious.

Poodle Hair and I exchange a brief glance. Or maybe I’m imagining it. But it felt like a glance. As a rule chicks with poodle hair dig me. It sounds arbitrary, and I don’t know what it says about me, but I swear it’s true, chicks with poodle hair almost always dig me. When I go fishing for a second glance, Poodle Hair is evasive. She’s getting cuter by the second. She has nice teeth. She looks good holding a corn dog. I’m now convinced I could spend the rest of my days beside her. Even if she got a little fat. But first she needs to look at me again.

Bingo! We lock gazes. But what’s this? Now she’s whispering something to her boyfriend who lowers his corn dog mid-bite. Now he’s staring holes in me. Now I’m looking at Trev, now at Trev’s shoes, checkered Vans.

“What?” says Trev.

“Movie?” I say.

“Yeah, all right.”

And without further delay, we stand to leave, well, I stand to leave, anyway. Hunching his shoulders to buttress the weight of his head, Trev clutches his joystick with a knotted hand and whirs around in a semi-circle, piloting himself toward the exit.

“Regal or Cineplex?” I say.

“Regal.”

 

Trev loves movies. Until recently, when he started losing some of his finer digital functions, he was a ticket taker at the Regal Ten, where he still enjoys free admission. We see at least two movies a week together.

He likes action adventures the best, because of “All the ass-kicking and cool exploding shit.” But secretly I think he likes the heroes because their strength always begins and ends with their weakness. Or maybe I’m projecting.

Today we see Hulk. Every time Dr. Bruce Banner gets mad, he turns green and swells up to double his size, and starts kicking ass. He gets mad a lot. Hulk has no interior life. I guess that’s his weakness. As is our custom, Trev and I discuss the film afterward on the walk up to Red Lobster.

“If he’s angry, why doesn’t he turn red?” says Trev.

“Got me,” I say.

“And what happens if Bruce Banner is banging a chick and he gets angry? Like, if he’s balls deep in a chick, and she scratches his back too hard?”

“I guess he’d probably start crackin’ some ribs with his fat hog,” I say.

“That’s fucked up,” he says.

I sometimes wonder if I’ll ever grow up. It often occurs to me that Trev never will.

As we work our way up the hill past Home Depot and Target and Red Robin, the conversation turns to Molly. I turned it there. I’m still trying to order certain events in my life, particularly events concerning Molly and a certain surfing Buddhist, who also happened to be my best friend. I have a lot of questions. Trev is less philosophical.

Redlobster

 

“Fuck her,” he says. “She was a slut.” He knows it isn’t true.

“I wish it were that simple,” I say.

“Mm,” he says.

“You gotta understand, I thought I was gonna grow old with Molly.”

“Fuck her,” he says.

 

According to the Fundamentals of Caregiving, Trev doesn’t need to know that my wife ran off with a surfing Buddhist who just happened to be my best friend, or that I’m a grad school dropout, or that I’ve practically never had a job that paid more than $8.43 an hour, or that I can be reduced to this helpful mnemonic:

Scared

Hopeless

Lazy

Unambitious

Born loser

 

 

We’ve arrived at the Red Lobster, where we’re standing in the foyer. The hostess appears, clutching a pair of oversized crab-shaped menus. She wears a red polo shirt with big boobs inside. Trev’s looking them right in the eyes.

“Two?” she says.

“I’ll say,” says Trev, a grin playing at the corners of his mouth.

The joke’s lost on her.

Trev orders the fish and chips like he always orders the fish and chips. I order the surf and turf.

“Did you see the funbags on her?” he says.

“Yeah. But think about it,” I say. “For years I broke bread with the guy. We went surfing, camping, you name it.”

“Get over it,” says Trev. “Pass me a straw, please.”

“I just don’t get it,” I say, passing him a straw. “How could he do that?”

“Fuck him. Could you take the paper off?”

I unwrap the straw and pass it back. “What the hell did I ever do to him?”

“Look,” says Trev. “Here’s what you do. Ask yourself what Hulk would do if his wife had an affair with his best friend?”

“Hulk doesn’t have any friends,” I observe bleakly.

“Whatever,” he says, an edge of impatience in his tone. “Get in touch with your inner Hulk, dude.”

“It’s a little late, don’t you think?”

He shifts ever so slightly in his wheelchair; his heavy head lolling to one side, his forearms dangling out in front of him like a tyrannosaurus.

“Poor you,” he says.

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Jonathan Evison JONATHAN EVISON is the author of All About Lulu, which won the 2009 Washington State Book Award, and the bestselling West of Here (2011). In 2009, he received a fellowship from the Christopher Isherwood Foundation. He is the executive editor of The Nervous Breakdown, and an advisory editor at Knock. He blogs at Three Guys, One Book. He especially likes rabbits and beer.

4 Responses to “The Revised Fundamentals of Caregiving (Everything You Need to Know to Make $8.34 an Hour)”

  1. Mary says:

    Beautiful =)

  2. Brad, R.N. says:

    Mr. Evison is currently touring in our area and I read about him in the local paper today. My initial search of his bio and literary achievements revealed a new author whom I identify with in a reflective manner. I have been a registered nurse for over thirty years working with oncology and hospice patients. I applaud this author’s candor in sharing his personal experiences as a caregiver and I anxiously await the release of his new book. I am embarking on my last ten years as a professional caregiver with a lack of direction; I somehow found a path in reading preliminary excerpts from this book. With sincere appreciation for your sharing and caring…..

  3. [...] author of the award-winning All About Lulu and its well-regarded follow-up, West of Here, but as this essay of the same title suggests, it will deal with caregiving quandaries in a sharp-tongued and [...]

  4. [...] assigned to a 19-year-old kid with Duchenne, and as they grow closer, they go on a road trip. This excerpt should give you a feel for what blurbers are calling the “energy” of Evison’s [...]

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