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Behind These Hands

Page 9

by Linda Vigen Phillips


  “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

 

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