"David?"
"Yes,
Richard?" His voice is being washed out by the passing cars,
so I lean over his right shoulder to hear him better. I have
to grip the plastic handles of the wheelchair tightly as I walk
behind it, straining sideways against the slope of the road's
shoulder and the spasmodic flutter of the small front wheels.
"What
kind of cigarettes you going to buy?" he asks. The gurgling
monotone of his voice jiggles with the rest of his body over
the split asphalt. As a consolation, the near edge of the mesa
to our right and the rocky, brush-covered hillside leading down
from it provide the first shady relief of the day. The shadow
of the broken ledge above us cuts a toothy line down the middle
of the street.
"Camel
filters, box top," I mutter hoarsely in his ear, Clint
Eastwood style. This is usually enough to get him going, and
tonight is no exception. His crew-cut head comes flying back,
projecting an open-mouthed smile to the wide evening sky. Richard's
teeth are flawless a white fortress of orderly bones
following a different set of instructions than the rest of his
body. His brain and the body it serves are the victims of an
unruly umbilical cord which cut his supply of oxygen at birth.
What Richard lacks in physical coordination, however, he gains
on you with relentless questioning. He thrives on idiosyncratic
details in the lives of those around him: the bus driver's whistle,
the location of his roommate's bowel movements, the amount of
makeup his mother wears on a given day. Each bit of trivia
serves as a sound byte and conversation starter when he needs
one.
More cars whoosh by, reflecting
sunlight in all directions and pushing a thick, warm wind of
uneasiness our way. The passing faces are playing cards being
turned over, one at a time. The blobs of color approach from
a distance and then snap the stark details
of the driver's expressions are frozen and focused for a moment.
Some are benevolent, while others appear confused, wary, or repulsed.
Longing and envy lurk curiously behind the glaring windshields
of some passerby. But the cards come too fast to arrange them
in any sort of order. The dealing is too messy to even tell which
hand is yours and which one is Richard's.
Just a hundred more feet and the
newly laid sidewalk will begin.
"David?"
"Yes, Richard?"
"Ramona make you mad?"
he asks, amused, for the purpose of recalling the fact, not to
clarify it. We are nearing the point in the shift when my voice
typically begins to wilt from all his questions. I am cloaked
in fatigue and eager to sit down somewhere for a smoke, but I
know I should wait. Getting too relaxed now will only make it
harder to finish the shift on time. Overtime is an option, but
pointless at this wage. It is a bad idea to think about the pay
while working, because you might take it out on the kids. Best
thing is to have a few drinks afterward this will
loosen the urge to quit the job, again and again.
Ramona
is the agitator of the group home fifty pounds of
mute, hot-wired fury. She just treated us to a first-class juicing,
one of several patented maneuvers she has devised over her years
at the group home; second in effect only to scooting around on
the carpet, naked, after crapping her pants. Her sense of timing
is ingenious. The minute I had the kids' dinner plates ready,
she sent the juice pitcher careening across the kitchen in one
flourish of movement. Richard's glasses were sprayed with fruit
punch, something he found especially funny. Ramona then stomped
off, snickering and pounding the heels of her palms together
in satisfaction.
Though the physical work is hard,
it is the mental weight of repeating tasks and events which pull
you down an institutional gravity created by the constantly
revolving needs of the kids, spinning on an axis that is you,
the caregiver.
"Yes,
Richard, Ramona made me mad."
Sensing
the drop in my tone, he turns his face and shows me a furrowed
eyebrow. "Me too!" he growls, feigning concern. Just
as suddenly, his frown loosens and a more pensive look takes
over. No cars pass on the street now that we are on the sidewalk.
"Why she do that, David?"
"Because she's nuts!"
I yell, taking advantage of the empty street. This time Richard's
head flops all the way back until it rests on the top edge of
his chair, facing up at me. His eyes are squeezed shut beneath
the thick, greasy lenses of his glasses. The things are filthy,
and I make a mental note to clean them before leaving tonight.
Richard's nostrils flare to the rhythm of his silent, convulsive
laughter. The excitement powers the collective straightening
of his muscles. His arms spring to life and shoot out to the
side like bony wings, and the chair's seat belt begins to dig
into his belly. He'll be coming up for air soon, I know. With
a gasp and a snort his head thrashes forward. Then he relaxes
again.
Treasure Island Pizza & Liquors
is a last chance stop before the city street becomes a county
road and winds its way up through private forest lands, toward
Vallecito. We wheel off the sidewalk and cross the street into
the storefront parking lot, a space only big enough for a few
cars. The delivery driver's green, rust-pimpled Honda sits in
its usual place directly in front of the door, ready to go on
a moment's notice. The building has two parts: on the left is
a convenience store and pizzeria, and on the right is a tiny
liquor store. Inside the liquor store, a balding man with slick,
black hair and leathery creases in his neck sits on a stool with
his back to the window. He smokes as he watches a sitcom on a
small, portable TV. All around him, stacked to the ceiling and
illuminated by the fading daylight through the window, rows and
rows of mahogany glass bottles hum. The man is oblivious to them.
Richard's arms now hang at right
angles from the sides of his wheelchair. We'll never get through
the door that way. Besides, he has slid down in his seat and
looks uncomfortable. It is time for an adjustment, a pause. The
transition from the private to the public realm is an important
one among several which punctuate Richard's day, each requiring
a methodical sequence of steps. Outside the door to the convenience
store I pull the parking brakes to pinch the wheels in place,
then move to the front of his chair to face him.
"Okay, Rich, you know the
deal. Remember to swallow and keep your arms in."
"Yeah,"
he answers weakly. I wipe his chin with a red handkerchief kept
stuffed in the frame of his wheelchair, then try to mop up the
pool of saliva which has accumulated on the front of his snap-button
cowboy shirt during the ride. I take hold of his shoulders and
gradually pull his upper body toward me, trying to get his tight
stomach muscles to relax. His head soon drops forward in surrender.
After a few counts and a deep breath from both of us, I ease
him back against the chair. Next, I squat slightly and press
his knees against the familiar place on my thighs. Cupping his
armpits with my hands, and being careful to keep my back straight,
I lift his upper body and thrust my legs forward in one motion.
It is a technique I have perfected. His butt hits the back of
the chair and the seat belt slackens mercifully around his waist.
"Okay,"
I exhale again. We are now poised to enter. Richard makes a soft
squeaking sound with his lips to show me he is trying to keep
the saliva inside his mouth. It is a practice that you have to
insist upon. The bitter smell of a day's worth of saliva
part dry, part fresh on a shirt is nauseating, even
by the hardened standards of his caregivers. Yet by the end of
each day, no matter how much you pester Richard, the spit still
wins in varying degrees. The competing needs of the other kids
at the group home, all of whom are non-verbal, make it impossible
to attend to Richard all the time. He might have to sit alone
for 30 minutes or more while you chase the others down for their
bath or medication. But the spit waits for no one; it just flows
and flows.
Our struggle
to enter the convenience store catches the attention of the young
hippie working the cash register, and a smile lights up his face.
He tucks away the long, blond bangs that hang in his eyes and
hustles over to hold the door for us. He seems genuinely glad
to see Richard. Once at the counter, I ask for a pack of cigarettes.
You can see that Richard is gearing up to say something, his
head tensing forward and his mouth opening as he strains to give
form to his thoughts.
"I
want to shop around," he says, decisively, to both of us.
The clerk and I glance around the store, across the three short
isles of chips, canned food and paper products, and I laugh.
The clerk follows my cue and laughs along with me. "I have
money!" Richard suddenly blurts out. The smile falls from
the clerk's face and he looks at me for a response.
"Sure, Richard, we can have
a look around," I say. With a slightly embarrassed nod to
the clerk, I turn and wheel Richard down the candy isle. "Do
you want a pack of gum or something?" I ask. No answer.
We are headed for the back of the store, toward the pizza counter.
The pizza makers wear baseball caps and their hair in ponytails.
One of them is folding pizza boxes and stacking them on a table,
while the other is cutting a circle of dough. You can tell that
Richard is entranced by their activity.
"Pizza," he says with
reverence.
"That's right. This is where
they make the pizza," I answer, assuming he's playing his
usual naming game.
"No. I want pizza."
"Pizza? Richard, you just
ate."
"There wasn't enough!"
he retorts. I have to laugh at this and Richard soon follows.
He knows there were plenty of fish sticks and tator tots to go
around at dinner. What he really wants is something new out of
this trip to the store, something that will delay his return
to the group home. He is employing drama as leverage toward this
end. It is part of his charm.
"Sure, buddy, we can get you
a slice. Do you want to do the ordering?" I ask.
"Yeah," he answers with a nasally subdued exhilaration.
His arms go up and his mouth opens in anticipation of the approaching
counter. A scruffy pizza maker comes walking up, wiping his hands
on his apron. You can see that Richard's eyes are wide with fear.
"What can I get you guys?"
the pizza maker asks in a booming, enthusiastic tone. Richard
erupts into a convulsive laughter which he can't control. This
is typical of new experiences; you just have to wait in order
to give him a chance to say something. The pause seems to make
the pizza maker a little uncomfortable.
"Richard, do you know what you want?" I prompt. With
two thrashes of the head he manages to form a word.
"Pizza," he says softly.
The excitement abruptly exits his body and his head falls to
the side with indifference. Overload.
"We'll take two slices of
cheese, two Cokes and one straw, thanks," I say, quickly,
to take the focus off of Richard. He doesn't so much as flinch
until the pizza man comes back with our slices set on paper plates.
Then Richard appears alarmed at the brevity of the event, that
it could be over so quickly. I spin the wheelchair around and
park us at one of the two booths next to the window. The sun
has disappeared completely, except for a thin slice of light
at the top of the mesa. The easy hues of twilight are soothing
after another day of intense, cloudless skies. From my seat I
place the straw on Richard's lips and he takes several sips of
Coke without stopping.
"Whoa, easy," I plead,
trying to pull the straw from his mouth without spilling. He
takes his head back with a heavy gasp for air.
"I was thirsty, David,"
he answers, heaving through his words.
"Yes, I see that." I
lift a slice of pizza to his mouth with my left hand while using
my right hand to feed myself, remembering to keep them separated.
Richard chews while looking over his shoulder at the pizza makers.
"Drink," he says simply.
You can't normally let him get away with one-word commands, but
it is pointless to ride him on the issue until he has time to
recover his overloaded senses. I place the straw to his lips
again and he takes just a few swigs this time before letting
go. "I'm done," he says in a throaty voice.
By the
time we arrive back at the group home, it is dark and the shift
is nearly over. The lasting smells of baked fish and potatoes
ride on waves of heat and greet us at the door. The kitchen and
rec rooms are quiet. From the long hallway leading to the bedrooms
come the echoes which normally great you outside the front door:
the cries, some moaning and pleading, others war-like and reptilian,
intersected by laughter, ecstatic and delirious. Richard knows
it is time to start getting him ready for bed. By the agitation
in his muscles, though, you can tell he is going to fight it.
"I need to call my dad,"
he protests when I turn to wheel him toward the bathroom.
"I thought he was going to
be gone tonight."
"He might be back!"
It is tempting, at this point,
to lecture Richard on his demanding ways, just to release tension.
But sometimes it is best to simply grant his wish and take him
to the office for his call, and this is one of those times. I
slide his tray back onto the front of his wheelchair and set
the speakerphone on top. He stares blankly at it as the line
on the other end rings and rings. Finally, a recorded voice comes
on.
"Hi, this is Charlie. Sorry
I missed your call. Please leave a message and I'll call you
back." Richard manages a tired smile as he listens to his
father's voice, his head hanging listlessly to one side. The
beep comes and his face becomes strained, contorted, his head
bobbing forward and back. His mouth opens but no words come.
"Tell him you just called
to say hello," I whisper.
"Dad, I was just wondering,"
he says finally, after some heavy breathing and a few false starts.
"I wanted to know. . .if . . .you . . ." His voice
trails off. He wants to have something important to ask, some
business to discuss, but there is none. The answering machine
on the other end finally beeps after a few seconds of silence.
I pause for a moment, then carefully turn off the speakerphone
and gently place it back on the desk. Nothing upsets Richard
more than an attitude of abruptness toward the nightly rituals
he values so much. Move too hastily and you might get bitten.
All
that remains now are the weary tasks of brushing Richard's teeth,
washing his face, and putting on his pajamas. The last thing
is to lay him in bed, turn him on his stomach, and pull the covers
up to his shoulders. It is always satisfying to see his amphibian
shaped body stretched out on the waterbed, his muscles finally
able to extend comfortably. Without his wheelchair or drool-soaked
shirt getting in the way, you can slide your arms underneath
his thin chest and hug him, which delights Richard and makes
him shake with a muffled laughter. Turn off the lights and lie
down next to him in the glare of the moon. Answer his questions
about where you are going after work and whom you will see. They
are the same questions he asked earlier, but you don't care.
Richard's voice comes relaxed and
easy, not from his throat but from deep in his body. Let yourself
drift on his lazy monotones and the waves of the waterbed. Listen
to the playful high notes which punctuate his slowed speech.
With one side of his face exposed, a brilliant sea-green eye
and its lashes glisten in the icy light of the window, eagerly
and involuntarily searching the night sky. Turn your head to
the sky as well, and take note of the upsloped mesas broken by
the valley to the north, the way they converge like immense train
engines a moment before collision.
It is well past the end of your
shift and you probably have friends waiting. Let the moon hold
you there in its trance and drink in its glow a while longer.
It has been a good day with Richard. Maybe you feel more from
him than can be expected of anyone else tonight. You are absorbed
into the fold of a design which is far more intricate than you
expected. You are physically and emotionally spent, but the day's
events that live on inside you feel complete. You consider the
emptiness of the other job options out there, the ones which
would have you doing for others what they can already do for
themselves, and you know you will be back tomorrow.
Richard's eye closes and his breathing
comes in slow, measured lengths. Carefully shift your body off
the bed and leave him rocking gently in your wake. The moon will
pass over the bedroom window and cast a mysterious light into
the tall grass of a field behind the house. Look for the narrow
foot trail which cuts a winding path through the grass and eventually
leads to the railroad bridge and, finally, to the river which
flows relentlessly. Your other plans can wait while you stop
for a cigarette or two. There is a story to tell and a rock for
you to sit upon and listen.
.
|