Its 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 Im not going to ennoble Trev just because hes looking death in the eye. Really, what choice does he have? Were all dying, Trevs just dying faster than most. But Ive seen faster a lot faster. The truth is, for the last month or so, at least half the time, Im downright annoyed that Trev doesnt 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 shouldve had such opportunities. Sometimes I want to let Trev have it.
Arent 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? Dont 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:
According to the Fundamentals of Caregiving, Trev doesnt 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 didnt have the guts. My guilt, my selfcontempt,
my aversion to other peoples children, Trev doesnt 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 youve recognized all his quirks and idiosyncrasies, once
you can predict (or think you can predict) his actions and reactions,
hell start to drive you crazy. Once youre forced to endure his routines
time and again, youll want to strangle him. For instance, Trevs
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 hes not likely to venture out into.
Whatll it be today? Ill say.
I dont know.
This is my cue to start Asking, to start Listening, to start Observing.
What about the white Chucks? Ill say.
The All Stars?
I dont 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.
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