I'm an unpleasant person. Though awestruck when I read personal
essays about disabilitythe adaptation and triumph, the wryness,
the discipline, the intelligence, the deeply held wisdomI
leave the pages wretched, as though face-to-face with an unknowable
language, since all THIS bitch thinks about every day is what
a mess disability leaves and how much work it is to clean up.
For the sake of color and charm, let me illustrate.
It's Sunday in the park with him and every single goddamn path is
on an incline. I think this must be impossible (in the hard light
of science) but every fucking inch of this hellish path around the
lake is uphill. More irritating are all the overly vivacious joggers
giving us a thumbs up, eyes shimmering with warmth of heart because
they have (through their tax dollars) welcomed the differently-abled
and hope we're thrilled to have lake access via circumnavigation
of this pitted, pitched path. I'm screaming at them (in my head)
THAT'S FINE IF YOU CAN AFFORD A POWER CHAIR TORQUED INTO OFF-ROAD
MODE, BUT NOT SO HOT IF YOU DO-IT-YOURSELFor are being pushed
(that would be by me) uphill in every direction.
He is never out of discomfort, but some days the pain index shoots
through the roof. This is one of those days. We visit the doctor
(a path oft-trod) and a hospital procedure is scheduled, IN PREPARATION
FOR WHICH he is to take several different emetics AND is
required to drink 10oz. of water every hour on the hour for twelve
hours. (Keep THAT plate spinning). Since so much is out of our control,
I hold dear the belief we should control what we can. To which end
I'm beside myself with glee when I find ONE DOZEN 10oz. bottles
of spring water! FURTHERMORE, I computer label each with big black
catch the plot.
he returns from work that day, after assuring me (several times)
on the phone that he's being diligent with his water, he leaves
his bag on the chair (which I promptly rifle through) and I pull
out 1pm and 4pm unopened! I nearly pass out from rage. I'm tight-lipped
the remainder of the day and into the evening. I even retire early
to avoid him; I do not trust the things that are on the tip of my
tongue. For his part, he makes several timid overtures, but I meet
each of them stonily.
some point in the middle of the night, I wake up to visit the bathroom.
my way there I see he's lying in the hall. The few hours of sleep
have nudged my fury aside and I ask him if he's alright. When he
mumbles noncommittally (refusing to answer, it seems to me), I step
over him and walk into the bathroom. It's fitting to be getting
a taste of my own; I was in a snit dishing out the silence, so he
is responding in kind. (Additionally, I have noted to myself that,
whenever I'm angry with him, he becomes extra shaky, tending to
trip and fall a bit moreas
well as wax moronic, "HONEY, IF THE COMPUTER'S NOT ON AND I WANT
TO TURN IT ON, WHAT DO I DO?" Which is to say, there's always SOME
little thing when I'm angry with him.)
bathroom business, I make my way back, stepping over him again,
and return to bed. Awaking the next morning, the hospital procedure
heavy on my mind, I discover him right next to me, snoring. I later
find that the cat had revived him by licking his butt with intimacy.
He is taking a taxi home from work. The route necessarily includes
one of the three steepest hills in the city. Eying the meter, but
only halfway up the hill, he realizes he has insufficient funds
for this trip, and (waving his cane) informs the driver of such,
though assuring him he will be able to procure the remainder at
home. The driver slams the car to a stop and tells him to get out
there, and then speeds off. He crawls (that's right, on all fours)
up the hill. Eventually, he reaches home. I suggest we get him a
cell phone. He says he gets along fine without one. In my mind,
I am thinking of rolling him down that hill.
We are out for dessert with friends. There is much frivolity, both
in the café and in the parking lot. As I sit in the car and turn
the key, I am SO busy laughing (and being subtly irritated that
he couldn't keep up with the walking over the uneven pavement, down
the steps and over so great a distance) that I forget he is still
trying to get himself in the car. I forget this as I take off. Everyone
is screaming. I can't figure out why they're upset. Then I realize
I'm dragging him through the parking lot and, THEN, I'm even angrier
with him for being so slow to get in.
We're visiting the Arizona Desert Museum. It's many miles outside
of town. The morning's paper said it's the hottest day of the year
(BLISTERING, EVEN FOR TUCSON!). At the front gate we are given a
choice in wheelchairs: standard hospital issue or streamlined, highly
flexible electric carts. He selects the manual version. (My head
is flying off my shoulders.) We're in the middle of the desert (natural
habitat in spades) with no shade, no rest area, no handy caféand
he wants to wheel himself. It's not really that kind of chair under
the best of circumstances and you may be suspecting that these circumstances
are not those.
path is said to be asphalt. We quickly discover it is in poor repair
and most often simply sand and gravel. Of course his shoulder blows
out after two minutes of trying to wheel the dinosaur uphill and
through gravel/sand. I'm putting on a good face, twittering that
the desert is lovely, if a trifle warm, and keep offering to push,
which he will have none of because people will think he's disabled.
(My head explodes.)
another five minutes he can't move at all and the heat is blistering
and, no matter how much he shakes the chair or tries to force the
wheels, it remains immobile. So I declare Martial Law, take over
and start pushing the chair through the habitat, pointing out all
the factoid placards. He asks every ten seconds if this isn't too
hard on me, what with the heaviness of the chair, the dune-like
nature of the path and the sweltering heat. I keep it chipper, despite
the fact that we are becoming more and more exhausted and desperate.
Museum signage is frequent and informative, indicating the various
wildlife we are spotting. Soon we know all their names. We know
how they operate in packs. We know they're carnivorous. We know
how they hunt. We know how they tend to focus on the weakest member/s
of any possible prey, the ones who look like they're having trouble
getting by. I grow considerably less chipper when I notice that
the wildlife is enacting the described predatory behavior, approaching
us more and more closely with (so it seemed at the time) relish
and appetite. They know, hands down, they've got him, but they may
grab us both if I don't high tail it out of there. To our mutual
surprise (and in spite of hefty temptation), I find the strength
of Samson and begin a frenzied push back to the entrance gate. He
wonders why I am rushing past all the animals. Am I not enjoying
myself? I lose connection with reality.
Home is a lovely thing. It can also be an easy and controlled thing
EXCEPT for the fact that he blithely wanders through the pristine
leaving chaos and debris in his wake. I employ several tactics to
remedy this. I smile warmly and clean up/put away with no real thought
of it. I smile warmly and clean up/put away while thinking rather
a lot about it. I smile thinly and restore while resenting and tacitly
rehearsing saucy remarks. I make exasperated sounds as I grab his
shit and throw it in a corner. As I snap clothes, scrape dirty dishes
and slam drawers, I tell him it would be a helluva lot easier on
me if he would not throw his clothes on the floor or leave his crap
wherever he happened to be.
he goes too far, and there I am standing in the kitchen doorway,
in an apron, brandishing a rolling pin and screaming YOU LEFT YOUR
GODDAMN WHEELCHAIR IN THE MIDDLE OF THE LIVING ROOM.
covers the earth. We know a line has been crossed.
doesn't really matter what straw broke this back, or how exactly
we got to this place on this day, but we look into one another's
eyes, catch the tail end of whatever soul dares to remain, and begin
to laugh. And laugh. And laugh.
can smell our parents in the room, and their parents and, maybe,
everyone's parents. And everyone's life.
a strange place we've got to. It's a hard place, with thorns. But,
it's our place. Owned. Cherished. Guarded.
© 2004 Larry Connolly
Illustration © 2004 Mark McBeeth, IDEA | MONGER
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Connolly writes fiction.
He lives in San Francisco.