The Revised Fundamentals of Caregiving (2 page)

the pro

N
ow, 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.
Th
at'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.
Th
e 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.
Th
e waffles, the Weather Channel, the mall and the matinee on
Th
ursday? 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:

P
rofessional

R
eliable

O
bjective

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
Th
ursday 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.”

Th
is 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.”

“
Th
e 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.

Th
ursdays 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.”

“
Th
at's fucked up,” I say.

“
Th
anks,” 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.
Th
ey take a table in front of Quiznos and begin eating together silently, as though they've been eating together their whole lives.

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

I wave them off. “She's probably a psycho.”

“Yeah, they're all psychos.”

We lapse into silence, and I wish I had a smoke. Strip away our routines, and we are little more than our hypotheticals. Last year, in this same food court, I 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.

Poodle Hair and I exchange brief glances. Or maybe I'm imagining it. When I go fishing for a second glance, she is evasive. She's getting cuter by the second. She looks good holding a corn dog. I'm now convinced I could spend the rest of my days beside her.
Th
en we lock gazes. And for one delicious instant there is a spark of possibility. Possibility of what? Of getting my ass kicked by a two hundred pound cuckold? Or more pathetic still, the possibility of being loved again, by anyone?

Now Poodle Hair is whispering something to her boyfriend who lowers his corn dog midbite. I was wrong—he's at least 220. He's staring holes in me. All I can do is look at Trev's checkered Vans and feel the heat of my face.

“What?” says Trev.

“Showtime,” I say.

And without further delay, we stand to leave—I stand to leave, anyway, acutely aware of the boyfriend's eyes in my back like daggers.

Trev hunches his shoulders to buttress the weight of his head, clutches his joystick with a knotted hand, and whirs around in a semicircle, piloting himself toward the exit.

“Regal or Cineplex?”

“Regal,” he says.

It's always the Regal.

o-fer

D
oing anything with Trev is slow, no matter how many times we've done it before.
Th
ere's the matter of the ramp, along with all that buckling and unbuckling, the fact that he's a slow eater, and the fact that he likes to make me wait. But at least we always get a good parking spot.
Th
ursdays are tight for me schedulewise, depending on the movie. Usually, by the time the matinee is over and Trev's had his fish-and-chips, and I drop off the van, I've got just enough time to put on my navy blue sweats with the drawstring and the elastic cuffs, my knee braces, my jersey, my cleats, and my hat.

My softball team hasn't lost a game in three seasons. It helps that we play the same two teams over and over—helps
us
, anyway. Line us up, and we look like any other stooping, paunchy, hobbled men's league roster from here to Casper, Wyoming, but we hit line drives all day long, and our defense is strong up the middle. Me, I can't seem to buy a base hit the last two seasons, not when it counts. Back in the day, I was a line-drive machine. Back when my skin was elastic and I wasn't so soft around the middle, and people used to tell me I looked like Johnny Depp, I played a nifty center field. I was a vortex where fly balls went to die.

Nowadays, the last thing I want to do after a week of caregiving is strap on some cleats and make a spectacle of myself in front of my peers (and worse, their wives and children), by going 0 for 4 against a guy who recently sprained his back making an omelet. But I soldier on for the team. And it is with the same sense of duty that I agree to accompany Forest and a few of the guys to the Grill on game nights to celebrate our victory.

Forest is my best friend. I roomed with him freshman year at the U. Even back in those days, he was gently trying to show me the way. Years later, he was my best man when Janet and I got married.

Forest is about six foot, 230, with big arms and a little bit of a gut in recent years.
Th
e crotch of his red sweats is starting to ride uncomfortably high—uncomfortable for everyone involved. We call him the Grape Smuggler because—well, use your imagination. Forest is the backbone of the O-fers. He pitches, bats cleanup, collects the fees, makes all the pregame reminder calls, fills out the lineup card, and is the undisputed (though unspoken) team captain. Few things inspire like watching Forest round third in the late innings with a head full of steam and two bad knees, his spare tire heaving violently beneath his snug jersey, just as the second baseman is fielding the relay.

“Run, Forest, run!” we yell, from the dugout. It never gets old.

Tonight at the Grill, it's cricket. Forest and I against Max and Teo. Max has a mustache of the biker/leather fag variety. We call him Lunch Box because he always brings his hustle. He may not look like a player with his straggly locks and stovepipe legs, but he hits ropes all day long, and though he runs like a man who is angry at the ground, he can actually motor. Pretty good at darts, too. He and Teo are currently smoking us. I'm not helping matters with my short-arm delivery.

“Good darts,” Forest says, patting me roughly on the shoulder.

He's lying, of course. I've managed only a single 20, and I've left 17 wide open. Triple 17 used to be my sweet spot. I was money on 20. I've lost my steady hand. Teo is raping us on 17s, and I'm letting Forest down again. But the truth is, it's hard to care for very long.
Th
e world flows right through me like a human dribble glass.

I know I should be counting my blessings: Forest, for starters.
Th
e guy is solid.
Th
en there's the fact that I get to see a matinee every
Th
ursday for free—how many people can say that? I should be doing my work. I should be plugging those holes, healing myself, filling myself back up like a jug. It's been over two years. But I'm still stuck in that driveway, my arms loaded with groceries, looking back helplessly over my shoulder as my universe implodes.

“Yo, Benjamin,” Forest says to me, handing me the darts. “Why don't you focus on bull's-eyes, and I'll work on closing those seventeens?”

“I'm on it,” I say.

Having just scored a double bull, Max is grinning like a chimpanzee. I know I'm a loser because I'm always happy for the opponent.

“Good darts,” I say to him.

Forest slugs me on the shoulder. “Bear down,” he says.

And I do. Adjusting a not-so-snug flight, and tightening a tip, I toe the line and narrow in on the bull's-eye. It actually looks pretty big tonight. I can still see it when I close my eyes. I tell myself I can hit it. Forest is probably telling himself I can hit it, too, but like me, only half believing it. Finally, leaning forward on my right foot, poised like a marksman, I let the first dart fly.

And, well, you can probably guess the rest.