“I can’t argue with that, at least
the goldmine part,” I say with a wry smile.
My notepad is empty
but my head
and my heart
overflow.
JAZZ NIGHT
The usual pre-concert adrenalin
puts my fingers on alert as we wait
in the wings
for our turn on stage.
It’s hard to believe it will be
our third year at this all-school event
with Juan on jazz flute
and me, the piano accompanist.
It’s his show
and I’m glad.
We are Mary and Billy
and I’m just keeping him company
as Mrs. Shepherd would say.
The thought gives me chuckles,
evoking a slightly alarmed look from Juan
as we walk on stage.
Juan slides into the opening with ease
and as he weaves through the riffs and trills,
the funky staccato notes running up and down the scales,
I realize how much of Herbie Mann’s
“Memphis Underground” has found
a warm spot in my mostly classical heart.
Juan is near the end of this long piece,
a flawless performance that splashes
energy and rhythm across the stage
and into the audience
when suddenly,
I realize with horror
my beat is off, this one part
that I knew needed more practice…
I’m messing this up!
I’m messing Juan up!
I stop playing
and pray that the audience will see it
as a planned solo finale
showcasing Juan.
And Juan? How will he see it?
And me? What is it that I need to see?
BROKEN THANKSGIVING
In the past,
the Monday before Thanksgiving
meant a short, light school week
before a long, fun, family weekend.
This Monday morning is like watching
a foreign film without subtitles.
Trent woke us all up before dawn,
screaming from a nightmare
that has carried over into an argument
about not wanting to go to school.
Dad just left early for his first class
after what sounded like an argument
between him and Mom.
He slammed the door hard.
I screwed up the accompaniment
at Jazz Night Saturday,
causing Juan to have to improvise
the last section of the piece to cover up.
Davy had a bad seizure right before Jazz Night
so Mom and Dad stayed home.
Maybe that’s a good thing
that they stayed home.
Thanksgiving anyone?
Ours is broken
and I have no idea
how to fix it.
KINDNESS AGAIN
I take out my sandwich.
Juan sits down.
He takes out his sandwich.
Mia slides in next to Juan.
She looks at both of us
looking at our sandwiches.
She takes out her sandwich.
“I’m sorry, Juan.”
“No, it’s okay, Claire.”
Mia tracks us like a tennis match.
“It’s not okay.”
“Okay,…then it’s not okay.”
Mia stops chewing and just tracks.
“Davy had a seizure right before we went out the door.”
“You know how sorry I am about that.”
Mia quickly cleans up and leaves without a word.
“But I messed up, messed you up, and look what
I did to Jazz Night.”
“Yeah, you messed up, and we managed to pull it off
anyway.
But forget Jazz Night. Look what you are doing to you.”
He finally looks straight into my eyes.
It’s kindness again.
He’s killing me
with his kindness.
WHITE NOISE
I’m glad for noisy cleanup clatter
after Thanksgiving dinner,
white noise to my grey thoughts.
maybe it’s a good thing Gram and Gramps
couldn’t make it this year
but then again
Mom and Dad are doing such a bang-up job
of acting like nothing is wrong
and by the luck of the draw
we had no seizures at the table
or arguments
so maybe Gram and Gramps
should have come this year
because who knows what
another year will bring
and
maybe Juan is really mad at me
about the Jazz Night mess
but he’s too nice to say it
to my face
but then again
I don’t understand what he meant by
what I’m doing to myself
and I wonder what happened to his offer
to help
and
maybe Mrs. Shepherd exaggerates too much
because it looks like her kids
were always happy in those pictures
and that seems like celebrating life to me
but then again
maybe she has a dark side
and came down on them a lot
and that wasn’t in the pictures
and
“Claire.”
Dad’s voice interrupts my thoughts
so I almost drop a plate.
“Your mother is taking the boys
to a movie. How about a walk
in the park?”
Dad won’t get an Oscar
for his portrayal of casual
and neither will I
for my rendition of carefree.
“Sure, Dad. Be with you
in a sec!”
SMALL TALK IN THE PARK
Dad doesn’t do small talk well.
“I know it’s been hard on you, honey.
Your mother and I are,
well, we just,
we want to make sure…”
“Dad, get to the point,” I snap. “If there’s
more bad news just tell me. I can’t
stand to hear…”
He stops in his tracks and grabs
me by the shoulders, almost shaking me.
“Claire, listen to me. There’s nothing
more that you don’t already know,
but I think you can see the way it’s
going. Your mother and me,
you,
the three of us,
we’ve got to pull it together.
The boys are doing better
than the three of us.
We’ve got to be there for them
and, we, I, well I’m not…”
He, my dad, covers his face with his hands
and breaks into sobs
for the second time in my life.
I look around,
disgusted at myself
for looking around to see who
might be watching my father fall apart,
and then steer us to the nearest bench.
I listen to him blow his nose
while I try to decide what makes me angrier:
his show of weakness,
the ugly beast,
or
the expectation I should feel thankful today.
NO MORE BAD NEWS
“Dad, are you and Mom getting a divorce?”
I almost laugh
in relief
at the mortified look on his face.
“Oh Claire, no, no, of course not.
We’re solid as a rock,
but rocks get weathered in constant storms
and this is a storm
that’s not going to let up.
I’m not handling it so well,
that’s what I wanted to say
and, well,
I’m concerned about how you’re handling it.”
He hugs me tight to his side.
I manage to hold my tears in
but his tears make it easier to talk.
“Yeah, I guess I’m having a hard time, too, Dad.
I messed up at Jazz Night.
It’s not like me. I’m…distracted.
Things don’t look the same anymore.
Even the keyboard looks different,
no, feels different
like I’m not the same person playing it
or my hands aren’t the same hands
as before.
Even my friends feel different.”
My thoughts leap to Juan
but I stop short.
It’s not something my father would get.
Dad is back to himself.
“Claire, there is an organization
that might be able to help us
get a grip, as you say. They have
a conference in a few weeks and Mom
has volunteered to stay with the boys
while you and I go do some
fact-finding.”
He spends the next fifteen minutes
telling me what was in that fat envelope
from BDSRA
that I wondered about earlier.
“But you said yourself there is
no cure. What good would it do
to go to a depressing conference if there is
no hope for a cure?”
He gives me an intense stare.
“I don’t know, Claire. I’m grasping
at straws. I’d like you to come
with me and maybe we can find out
together.”
I ask if I can think about it.
“Middle of next week?”
I shrug in agreement.
I’m finally thankful for something:
that we got home
from a simple walk
without
any more
bad news.
SCHMOOZIES GROUP THERAPY
I hadn’t intended on turning
a casual Schmoozie visit into
a group therapy session,
but that’s how it plays out
when I mention how things are so
uptight
at home
and how my dad thinks he and I
should go to this conference.
Tara chimes in first:
Yeah, Claire! I’ve missed hearing you
in the practice room on my way
to cheerleading practice.
Seems like it’s been forever.
Carlos follows:
It’s like my wrestling matches, man,
the more people you meet out there
the more you know you got it good.
Mia jumps in:
Oh Claire, it’s gotta’ be hopeful
just meeting all those people who are going through
the same thing.
Kyle looks tongue-tied, but tries:
Yeah, Claire, I don’t know your brothers
but trying to understand them
will only help you;
I know from my mom’s bout with cancer.
Juan, grabbing my hand in the crowded booth:
Finally, Claire. Tara’s right.
Let the music
come back into your life.
He squeezes my hand
and his clear dark eyes
search deep into mine.
I want to say a thousand things
to him
and I want him to kiss me,
but both will have to wait
for an alone moment…
maybe the next time
we share the music together.
INTRODUCTION
It’s spitting snow when the cab
lets us out at the Brunswick Hotel
in downtown Cincinnati.
It occurs to me that this isn’t
one of those destination cities you hear about
where it’s nonstop fun
and then I remember,
we didn’t come here to have
any fun at all.
I suddenly feel sick.
What will we find out?
What will we not find out?
Who will we meet?
Why did I let Dad
and my friends
talk me into this?
A large banner draped across the front desk reads
“Welcome Batten Disease Support and Research Association.”
It’s the first time I’ve seen it all written out
and I shiver from the cold wind that blew in behind us
and the icy thoughts invading my brain.
An overly jolly man approaches Dad
as if he recognizes him.
He doesn’t, but he introduces himself as Henry
and ushers us to the registration table.
While Dad signs us in
I notice a crowd of people drifting in and out
of a room across the hall,
and I make a mental note to check it out later.
Something lightly bumps the back of my leg
and I turn around to see a girl
in a wheelchair smiling up at me.
…the more people you meet out there
the more you know you got it good…
“I’m sorry,” the woman pushing the chair says.
“It looks like we all arrived
at the same time.” She smiles, reaches out a hand.
“I’m Sharon and this is Melissa,” she says,
patting the girl on the shoulder.
Melissa lifts her hand in a wobbly gesture
but I’m not sure
if she is trying to wave
or waiting to shake my hand
and then I notice
she is blind.
She says “hi” in a gravelly, too-loud voice
and laughs. Her mom reaches down to
wipe the drool from her mouth.
“Hi, Melissa,” I say, shoving my hands
awkwardly in my coat pockets.
“Your first time?”
Sharon asks.
“Uh, yeah. I’m here with my dad.”
…just meeting all those people
who are going through the same thing….
I don’t feel like talking
but I don’t want to be rude.
I’m relieved when Dad guides me to another table
without noticing Sharon and Melissa
where we pick up a thick packet of information
and then head to our room.
“Okay, let’s see. Looks like there
is a ‘general meet and greet’ in a few minutes
followed by dinner and a
‘new family’ orientation.”
“Dad, can we cut a deal while we’re here?”
“Sure, honey, what is it?”
“Can you stop pretending everything is so,
so, you know, like, normal? I mean,
I saw some people out in the lobby
who look really sick, you know,
and I just don’t think it’s a good idea
to be all happy and everything
when they are so bad off,
you know what I mean?”
Dad gives me a quizzical look
that I can’t exactly read
but he finally smiles,
says “Deal,”
and tells me we have ten minutes
before going downstairs.
…trying to understand them
will only help you…
MEET AND GREET
A room too small
too
warm
too congested with
too many wheelchairs, strollers, walkers
holding too many young children
laughing
twisting
jerking
smiling
drooling
staring
talking
living
dying.
It looks like no one
is having trouble breathing
but
me.
NEW FAMILY ORIENTATION
This room is too chilly
and set up like a meeting room
with rows of chairs.
We come in late and take seats
in the back row.
I see no wheelchairs, only two strollers—
brother and sister, it looks like,
and a girl about my age.
I count six fathers
who shoot up from their chairs
one at a time,
introduce themselves
in strong, superficially confident voices
like Dad sounded yesterday,
and describe their family members
who have Batten disease,
some here at the conference,
some left at home.
Now Dad rises slowly to his feet,
begins to speak
and abruptly chokes up.
Some heads turn,
others look down in their laps.
The man running the meeting
waits patiently while Dad recovers
enough to introduce us
Behind These Hands Page 9
