mid set, occupying the Tuesday evening slot at Rustys, a semi-legendary
jazz cafe cordoned off by railroad tracks and a woodsy backstreet
in Toledos south end. Its nearly a full house, crowd halfway
receptive, not too liquored up, and my Telecaster guitar feels easy
in my hands for a change as I blend with my quartet onstage, chunking
to the Miles Davis classic, Solar. Yeah, things feel right
in the pocket tonight.
That all changes when the exit doors open wide, stage left, and a
daisy chain of four wheelchairs files in, the first one occupied by
my little brother Ben. He is trailed by fellow residents from his
direct-care center. I recognize the three caregivers, women who have
nurtured and doted on Ben for years. They position the wheelchairs
on the tiny dance floor between the stage and the café tables,
facing the bandstand. Somehow the women have found out about my steady
gig, and made it an excuse for a group outing. But I had no warning
and forget how to play the guitar for long moments. One of the caregivers
waves at me; I pretend not to notice.
It had been a chilled scene before, heads bobbing over candlelit tabletops.
But now, the audience is an attentive multi-eyed monster boring its
gaze frontward. Our playing becomes self-conscious, or maybe its
only mine. Im parked on a stool, stage right, my amp elevated
on a milk crate between me and the wall. I try to lose myself in the
hard bop groove, chording syncopated rhythms over which our alto saxist
can shred. My eyes stay locked on my fret hand, denying Bens
presence like I have for so long. It has always been easier that way.
Sixth grade. I was on the mound in a Little League game at Friendship
Park. It was my first start, and I was vexing batters with a wicked
forkball that Dad had shown me during one of our catch sessions. Strikeouts
were accumulating nicely. I was in mid windup when I heard my brothers
lyrical yelp from the sidelines. Mom had materialized with Ben, who
was buckled in a stroller, sitting in the grass off third baseline
with other lawn-chaired spectators. It was a chilling surprise.
I had told her to never bring Ben to any of my games because I didnt
want people to associate me with him. But Mom insisted on witnessing
my big day, and bringing Ben was the only way she could attend. My
brothers condition was something vulnerable and private for
me, something to remain hidden behind the mustard-colored aluminum
siding of our house.
In no time, Bens hiccupped joy yips interrupted the games
flow with a hecklers persistence, making me walk batters until
I got pulled and sent out to center field.
Two kids sat behind Ben, snickering and mimicking the way he purred
nonsensical words. His ticks, screeches and effusive laughter were
a clown act for them. I was at bat when I heard Moms raised
voice. Do you think cerebral palsy is funny?! The game
went into suspension. I saw her standing over the two kids who shrank
from her Hispanic ire, reduced to sedate mutes. My brothers
blipped expulsions finally pierced the silence. The game forged on.
I never acknowledged Mom and Ben that day, staying close to my team.
Mom hung back, allowing me to be a Judas harboring inconsolable embarrassment.
By the time the game was over she and Ben were gone.
My brother came along three years after me. Upon his arrival, the
doctor told Mom that it might be better to institutionalize him, and
that kids like Ben usually didnt live long. But giving a son
away wasnt a thought for Mom and Dad: cerebral palsy, a missing
left eye, and profound mental retardation mattered not.
Ben has almost no use of the right side of his body, where his leg
and arm stay bent and closed for business; they are atrophied and
stiff compared to his virile left limbs, which are super strong from
being taxed with double duty. He cant walk, yet has no trouble
scooting on his butt, pulling himself forward, using his good leg.
My brother easily wins out as the more ornery sibling. Growing up
in our two-story home, he liked to storm the kitchen, where he could
scoot more easily in his rubber pants over the vinyl floor. Opening
the lower cupboards, hed yank out all the pots and pans and
sling them helter-skelter over his shoulder. Tupperware and tin flew
about as if by poltergeist infestation; banging cookware in a frenzied
tantrum was his idea of fun.
Early on we played like ordinary brothersin our own way. Id
unfurl my sleeping bag at the top of the second-story stairs, sit
on it with Ben in my lap, curl the end of the bag over us, and toboggan
down at dangerous speeds. Or Id turn the piano bench upside
down, put Ben inside and whisk him around on the carpet in a makeshift
go cart. Sometimes Id pretend to be in agony, making loud moans,
at which hed shriek with laughterhe loved it if he thought
I was in pain. Often, when I did something he didnt like, he
would scratch me with the talon-sharp fingernails of his left hand,
or hed bite into my arm like it was a BBQ rib. He did it with
such explosive speed that I never saw it coming.
Ben initially had some vision in his only eye, but later it developed
a cataract, and so my parents arranged for an operation. He was up
in the operating room when the doctor came down and told them he wouldnt
be able to proceed; Bens eye was too mushy to withstand
As the cataract stole his sight, my brothers eye started to
rove, in constant motion like one of those swiveling spotlights atop
a Vegas casino. In blindness, he gained extreme auditory sensitivity,
spending much of his downstairs time on the floor in the dining room,
absorbing Top 40 songs played on the radio through our stereo system.
With the left side of his face pressed into the spongy cover of the
tall stereo speaker, Bens body took on a hunched posture, his
spine curved by double scoliosis, head balanced over crossed legs.
This is how he sat for hours, rapt, mainlining harmonic vibrations,
sometimes breaking pose to rock his upper body in time.
Id step in and deejay when the mood struck, spinning vinyl on
the turntable for him. If he didnt like a song hed tilt
his head up and caterwaul, and Id move the stylus over until
he started giggling and cooing with approval. Over the years he was
at home I exposed him
to The Beatles, Boston, Queen, Led Zeppelin, The Jackson 5, Bread,
Eric Clapton, Elton John, The Commodores, and some of Dads jazz
albums, including Dave Brubecks Take Five, and Ramsey Lewis
The In Crowd.
My parents never asked me to take care of Ben. Even when I was
old enough to babysit, they didnt shoulder me with the responsibility,
instead hiring a trusted high school girl from the neighborhood. I
never fed my brother, nor bathed him. I never helped him in or out
of his clothes, changed his diapers or gave him his meds. I never
even gave him anything for Christmas or his birthday.
There was one thing I did for him, though. I always made an effort
to pick up his spoon. His spoon was his musical instrument, his artistic
outlet. He would sit in his adult-sized hospital crib that, which
stood high off the floor like a chromed elephant skeleton, drawing
metallic rhythms from a teaspoon from the kitchen drawer. Knees akimbo,
left shoulder leaning into the elephants ribcage, his ear tilted
down near the tick-a-tat scat of that spoon, developing a virtuosic
dexterity that gave his instrument a magic flutter, the fingertips
of his left hand tapping the spoon shaft against one of the elephants
I would sit in a nearby rocking chair in the corner and watch him,
listening to the percussive anomalies he coded out, rhythmic sculptures
that tilted the atmosphere to his liking. At dusk, if I turned the
lights off in his room so that only twilight beams reached through
the window, he made the spoon flash as if it were a silver hawks
wing in metered flight.
Every so often the spoon escaped his feather touch, making a cadenza
clang on the bars before it hit the shag carpet. Ben couldnt
reach the spoon from his perch and would hold out his hand, and hollering
for its return. I liked to test his bionic hearing, picking up the
spoon and making an imperceptible (to normal ears) tick somewhere
on the bars. His hand always met the spoon with the ccuracy of a lizards
long tongue snatching back a fly. Other times I made taps in various
places on the bars then jerked the spoon away, tormenting him until
his yell reached a crescendo, and Dads voice boomed up the stairs,
Give him the goddamned spoon!
Bens spirit was nurtured by music, but his body was wired together
with medication. He couldnt chew solid food or swallow on cue,
so his pills had to be hidden in a spoonful of cottage cheese or sour
cream, and given to him throughout the day. As a child, one of his
pills was supposed to control his epilepsy, and yet he still had seizures.
He would be sitting on the floor, in perfect contentment, then snort
in a gulp of air as he was slammed forward into half-bent submission,
his good arm thrown out to the side as if yanked at the wrist, fingers
splayed. His face went bloodless and his body was possessed by a rigor
mortis grip. It seemed that his heart and blood flow stopped. If I
touched him, I could feel his whole being quiver.
My parents could only soothe him, letting him know someone was there.
Dad would rub his back and murmur comforting words, a gentle authority
in his voice that let Ben know he would be all right. When the seizure
released him he would fall into winsome moans, slow eerie sobs that
communicated the disorienting terror hed felt. Then, after several
minutes, a post-traumatic euphoria welled up in him as the attack-and
his fear-receded. He would rock his torso till his diapered rump left
the floor, laughing with delirious gratitude. I sometimes careened
him around on the upturned piano bench to help seal in his joy, or
moaned in pain to make him forget his own.
As soon as he was old enough Ben started attending Larc Lane, a school
for kids with disabilities. A special bus picked him up in front of
our house every day. I didnt like how the whole neighborhood
could get a good look at him as he came and went.
The older I got, the less my brother and I had in common. It became
easier to ignore him-unless I needed an audience. Then I would climb
into his crib with my guitar, lean into a corner and play. Ben would
scoot across the mattress and press an ear against the instrument,
melding with the resonating soundboard. My irritation at having his
head in the way of my pick hand always cut these performances short,
leaving him whining for more. If his encore demands werent obliged,
he would try to strafe me with his fingernails, and Id have
to shield my escape with the guitar. Perhaps the one thing we did
have in common, aside from Mom and Dad, was the fact that we were
One day I lounged on the living room floor, practicing a song called
Ive Grown Accustomed to Her Face, which Id
considered a lame show tune until I stumbled across a soulful guitar
version of it on Rod Stewarts album Smiler. My fingers had barely
struck steel when I heard screeches of joy from Ben in the dining
room; he came scooting straight at me. I stopped playing as a test,
and it worked: he stopped, and then tossed his head up and started
bawling out of extreme disappointment. I started again and he again
spurred forward, his ears tracing the guitars woody croon until
he could put his ear against it, laughing in delight. Id never
seen him react to one of my songs with such excitement. It was an
unexpected reward for all the work Id put into learning a difficult
guitar, and arranging a tune completely by ear. I played the song
again for Ben all the way through, even with his head in the way.
One frosted morning in high school as I stood at the bus stop with
a smattering of schoolmates, some yuck next to me shouted, There
go the retards! He pointed to the short yellow bus as it eased
to a stop at the corner. The kids inside were whooping with spontaneous
verve, heads lollygagging in all directions, some of them climbing
over their seats. Ben sat in back, alone, hunched next to the window.
No one knew he was my brother. He looked tranquil, unaware that he
was on a special bus, rolling into a fog that would never lift. Then
that same yuck started making noises like his mind was gone, and that
kept everyone cracking up until our bus pulled up. I was laughing,
Such memories lurk in the badlands of my past, yawping from a dead
tree every now and then, making sure I never forget.
With each passing year Ben mocked the doctors prediction of
a short lifespan. But his care became more complicated. He was heavier,
stronger and harder to handle, and his disabilities became more pronounced.
Right before he entered his teens, Mom received a phone call from
an agency in charge of a new state-run facility for the profoundly
disabled. The agency person touted the benefits and programs that
my brother could receive there, promising that they would help him
better realize his full potential.
My parents kept me out of school the day we checked Ben, then 12,
into the facility. The complex consisted of low brick buildings set
on concrete, across the road from a psychiatric institution. Bens
new residence was Building A. Inside, the rooms had whitewashed walls
and squared cushion-less furniture that reminded me of giant Lego
bricks. The caregivers were dressed like dental hygienists. There
was no warmth to the designplace. Mom lingered, carefully telling
Bens new caregivers how he didnt like spaghetti or sweets,
and that he especially didnt like anything chocolate. Dad had
to dislodge her. I wouldve much preferred going to school than
to watch Mom weep, barely able to stand as she leaned against Dad.
Then we walked out, less one.
Mom continued to cry even after we got home. I heard her tell Dad,
I have a horrible feeling about leaving Ben behind. But
he was only a 25-minute drive away, and we were able to bring him
home for the weekend a couple times a month. I usually went with Mom
to collect him after school while Dad was still at work. I had to
steel myself before crossing the threshold of Building A. The facility
was attracting severe developmentally disabled cases; many of the
residents displayed behavioral problems. Some of them had to wear
restrictive jumpsuits to prevent excessive masturbation.
When I got there, the residents were curious about this new presence
and needed to investigate me. Mom would disappear early on to pack
Ben some clothes, while I pussyfooted around the common room, encountering
shuffling, diapered residents. They honked out gutturalizations and
ghost wailings that echoed off the barren walls. The ones with full
mobility followed me as if I were a guiding light. Sooner or later
a hand would land on my shoulder or clutch my arm. I was always gentle
about easing out of someones grips, my senses withdrawn into
a protective state of numbness
As it turned out, the facility didnt do much more than keep
developmentally disabled and profoundly retarded citizens from spilling
into the streets. Five years went by and my brother never progressed
My own arrested development was strictly voluntary. I cut classes
a lot once I started driving. I would tool past my high school and
stash my hand-me-down Rambler sedan inside the pined entrails of a
city park to read comic books and nap in the backseat. My textbooks
warped and gathered mold in a locker wallpapered with demerits and
suspension notices. I embraced my aimless cipherdom to such an extent
that dropping out seemed too proactive.
I never used my car to go visit Ben, and when he was home for a weekend
I barely noticed. My free guitar concerts in his room ended once I
discovered it was more fun to serenade girls. After making up a couple
failed classes in summer school, I did manage to graduate, and somehow
got accepted into the University of Toledo. I only applied because
thats what my parents expected of me to do.
Ben was 17 when my folks had him transferred him to the Anne Grady
Center, a private, nonprofit facility in Holland, OH. He received
outstanding care there, and began to show improvement. He got his
own bedroom, received occupational and speech therapy, and learned
some rudimentary sign language. He began to respond to a question
by touching the armrest on his wheelchair for yes and
no answers. He started playing three-note compositions
on a piano in the recreation room, amazing me with his perfect timingsomething
Ive never fully mastered.
I still wasnt exactly fond of walking the halls, but the positive
energy in Anne Grady made it easier. Over the course of many trips
to help Mom pick up Ben, I grew to know the gaggle of women charged
with his care and watch their attachment to my brother grow. These
women would become his other family, holding him close to their hearts.
In time, Bens meds brought his seizures under control, making
them both less frequent and less traumatizing. But I still never ventured
to the center to visit him on my own.
I was 31 when I entered my senior year at the University of Toledo.
It can takes 12 years to earn a bachelors degree in English
literature when youre juggling a house-painting business to
help pay for your education, playing in various bands and experimenting
with controlled substances. My parents had divorced but were still
friends, living only three miles apart. I had been shacked up with
my girlfriend for a couple of years, but when she kept talking marriage
I moved back in with Mom to save some traveling money supposedly to
When Ben came home for visits, I helped Mom get him out of the car.
He could scoot to his room, but needed a boost getting up into his
chrome elephant. Other than that, I mostly denied him my time. The
only effort I made was to pop into his room and hand him his spoon,
and to make sure he had good tunes on his boom box.
At UT, I enrolled in jazz lab and found myself gravitating towards
a drummer, a saxophonist, and an electric bassist. We started learning
jazz tunes from the Real Book in rehearsal hall and named ourselves
Mr. Goneafter a classic Weather Report album. About the time
we had a set list together our drummer, Mark, who always had a line
on things, heard there was an opening for the Tuesday night slot at
Rustys. Our audition won us a steady gig that would span two
years. Ben was the last person I ever expected to see in the audience.
When my brother rolls in with a warm gust Im back in sixth grade,
back in the mortifying predicament of a certain Little League game,
except the pitching mound is a stage this time. Ben has no idea Im
performing only a few yards in front of him. The room tilts and my
chords take on a pitiful obtuse sound as my angst goes critical. Im
staring at my fret hand but seeing nothing; the music squawks at me
in distorted gibberish.
Then something let go, as if a secret vault behind my sternum
opens and a locked-away piece of me spills out. All the feelings I
have kept hidden away about Ben surge forthall 32 years worth.
It has taken a precise numinous jolt, while being pinned against the
stage wall of a jazz cafe, to give me the strength to reach inside
to a place that is deep enough for self-reckoning.
The song ends, giving way to ripples of applause. Before we strike
the downbeat of another tune I ask my bandmates to lay out, so I can
have a few minutes to my self. They are accommodating but unsure about
the situation as I leave the stagethey dont know any more
about my brother than the audience does. I approach Ben and whisper
into his ear to let him know its me, and then wheel him up against
the low stage riser, positioning his good side against my amp. I sit
on the stool, take up my instrument and beginstart to play. Ben presses
his ear against the amp speaker, instantly recognizing the chords
to Ive Grown Accustomed to Her Face.
by Christopher J.B
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