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 selfcontempt, 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.”

Excerpted from The Revised Fundamentals of Caregiving by Jonathan Evison. Copyright © 2012 by Jonathan Evison. Excerpted by permission of Algonquin Books. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.