MOEBIUS1.ORG

MOEBIUS MUSINGS
                              by Kevin Smant
 

July 2004

Everyone, this column is especially dedicated to all those involved with
the recent Moebius Syndrome conference, attendees and organizers and all
who were there.  Some of it reflects an insider's point of view.  I hope
you get most of the references.  But even if not, just know that it
reflects several days, spent deep in the heart of Texas, involved in
something special with an amazing group of people...



**********************
Thursday, July 8, 9 p.m.

The plane descends into the warm, sun-just-going-down Texas twilight.
Wow, how many terminals _are_ there at the DFW airport?  There's my
luggage.  How, again, do you get the hotel's shuttle?  Oh...it's late
and the shuttle has quit running?

Taxi!

Hmmm, I didn't realize 15 minute cab rides could cost that much...

*******************

10 p.m.  At the Wyndham, and there's blessed air conditioning, and I
check in, and there they are, a big group of them, persons with Moebius
Syndrome and their families, sitting in the lobby.  And there are hugs,
and handshakes, and hellos.  No, there are no smiles.  They are inside.
But they're from the heart, and they're there, and even if you can't see
them, you can feel them.

The children with Moebius are arriving, too.  There's Jana and Caitlin
and Lily and others.  And there's young ladies growing up fast, like
Jessica and Chelsey.  They're all beautiful.

We need food and drink and to talk and re-connect.  Look, there's the
hotel bar.  There is laughter and stories.  You stayed up HOW late in
Oklahoma City, Steve?????

We stay up late.  We'll sleep when the conference is over.  We're
connecting.  We need each other.

*********************

Friday morning.  I finally meet Phyllis, conference co-chair.  But only
for a moment.  Voices constantly call out to her.  "Phyllis, could
you...?"  "Phyllis, what do we do about...?"  Whoosh!  She's off.

We all work.  There are tables to set up, bags to stuff for attendees
and speakers, registration to begin.  Groups of people sit on the floor
here and there.  Bags float by hand from one end of the room to the
other.  Paper crinkles.  There are brochures and bandanas and boxes.
"Are these sacks stuffed?"  "Lisa, the coffee your company donated
smells great!"  "Those bags need to be checked---they've got two
brochures in them."  "Who did that---you???"  "Get the conference badges
out."  "Leslie, we can't find your badge!.....oh, look, yes we did.  I
guess you exist."

The crowd grows.  More hugs.  More people.  Handshakes.  "I think I met
you at the last conference...right?"  Roland has met EVERYBODY.  He
makes all feel welcome.  He's everywhere.

Work goes on behind the resource table.  "Marcia, how much does this
cost?"  "Here's a price list.  There's a quiz on it afterwards."
Yikes!!  T-shirts everywhere.  Here, take a pen, they're free.  Raffle
tickets---6 for $5.00!!  Put it right in that box, sweetie.  Do you feel
lucky????

We're all connecting.  We need each other.

**********************

Wow, is it almost 12:45 already?  Time to make the first announcements.
"Go ahead and get us started, Kev."  Gee, thanks, Phyl.  Where did all
these people come from?   The room is packed.  Never spoken before this
many folks.  Maybe that's why I'm sweating.  Well, come on professor,
it's not like you've never spoken in public before.  Er, ahem.  "Welcome
to the 6th International Moebius Syndrome Conference..."

Tim gives his keynote speech.  He's a producer with CNN.  He also has
Moebius Syndrome.  It's a good speech.  I stand in the back with Lisa,
and we're both nodding our heads a lot.  Tim once said to President
Bush:  "Stop!"  He joined President Clinton in a gift shop in Africa.

Conference 2004 is on its way.  I'm walking back and forth, from this
room to that one.  Are we on schedule?  Well, pretty much.  Speakers
hold forth on research and facial reanimation and club feet.  I whiz
past Phyllis, she whizzes past me.  We confer occasionally.  But not for
long.  "Phyllis, could you...?"  "Phyllis, how do we...?"

Small problem comes up.  Ah, there's Phyl.  "Phyl, there's a tiny
problem.  Who do we call?"

"Ghostbusters."

I learn to muffle my laughter when sessions are going on and speakers
are doing their thing and I'm talking to Phyl.  But it's harder than I
thought.

**************************

Later in the afternoon there are a few tech glitches and delays.
PowerPoint presentations are touchy.  Especially on different computers.
"Wayne, could you...?"  "Call the hotel AV people..."  Eventually we
keep things moving.  Did Wayne know he'd be our PowerPoint specialist?

Wow, it's past 5 p.m. already.  A few of us check out the hotel bar
again.  How does the waitress remember all our names already?  Why are
my feet so sore?  Why are we all so tired?  Why also are we all so glad
we came to his conference?

Down deep, we know.  We always knew.  Connecting...

Big panel discussion at 7 p.m.  I'm on it, so are Tom, Chelsey, Pam,
Dave, and Roland, our moderator.  It goes well.  They're all terrific.
We all speak from the heart.  I hope it helped others.  Wow, the room
was crowded.  Then off to a reception in the gazebo.  People.  Tables.
Laughter.  Hey, aren't all we adults going out to eat?  Come on, move
it, folks, it's getting late!

Ever try herding cats?

Where are we going?  Well, we WERE one group but we wind up split in two
different places.  Texas barbecue.  Steaks.  Tell the hotel shuttle bus
to wait a sec, we're coming!!!

The night isn't over.  Around the pool some sit, with now a Texas breeze
blowing.  Mary!  You've got beer in your room?  Bring it down!!  But
Canadians like their margaritas, we found...

Is it 1 a.m. ALREADY????

*********************

Saturday morning, 7 a.m.  Time to get up.  First session at 8.  Why do I
feel groggy?  Can't imagine.

Wow, lots of people got to breakfast early.  I guess sleep helps a
little.  So does Mountain Dew, in a pinch.  Glug glug!! 

Whooosh!  Oh, hi Phyl.  Yes, we're about to start.  Yes, we'll keep it
on time.  Yes, I'll remind everybody about the teen outing and what time
dinner is and about lunch and...

Meanwhile Roland and I somehow have on the same color shirts.  Great
minds!  "No, I did NOT call him and get permission..."

First session of the day.  Karla Hogan.  Powerful. Independence---how
can we promote it?  Remember the anchorwoman on TV with the hair out of
place.  You have Moebius?  Yes.  But other people aren't perfect either.
Karla sings:  "...And remember, in the winter/'neath the deep and driven
snow.../lies a seed, that with the sun's love/in the spring, becomes the
rose..."   Standing ovation.

The sessions move on.  Are we on time?  Hi, Phyl.  "Here's your cattle
prod, Kev, keep 'em moving."  We do.

Resource table.  Sales continue.  "You mean we're out of extra-large
T-shirts ALREADY?"  "Lisa, would you mind setting up some extra doctors'
consultations here at the conference for families with children?  Here's
the times and some info, just let people sign up with you.  Line forms
over here."

"Wow, I've never seen such a long line form so quickly."  Er, Lisa?
Where did you go????

**********************

Lunch.  A buffet.  There's two tables, each with identical food.  Should
be two lines.  Hey, look!!!  There's a real short line at that one.
Maybe I can...

What do you mean, the food's gone?  And where are the desserts?????

Well, loading up on potato salad I suppose isn't a bad thing...

Afternoon.  We continue to roll along.  "Cattle prod, Kev.  Cattle
prod."  Why are my feet sore?  Good thing tennis shoes are encouraged
here.

The Moebius adults once again troop over to attend the session of the
"Kissing Doctors."  They bring out the best in all who attend.
Everybody discovers the good and the talent in us, and in others.  Lest
we forget, the docs have us write it on each other.  But that's another
story.  (do markers leave a permanent mark?????)

Roland's sisters are here.  They don't have Moebius.  But they're here
for Ro, and they learn a lot, and everyone is glad they came.  Dee even
does yoga and Pilate classes.  I bet some of us didn't know there were
such things as Pilate classes.  (why does it keep reminding me of
Pontius?)

5:00 comes, and we relax, and dinner is at 6:30 again in the gazebo.
Tex-Mex food, and talk, and laughter, and sunshine through the windows.
Raffle winners announced.  Dancing begins, with the kids in the lead.
Soon joined by many adults.  Wow, they still play the Macarena at these
things! 

Phyl is dancing now.  Forget the cattle prod, she's cutting the rug.
And so are Dean and Victoria and Ro and Leslie and Matt and Stephanie
and Patrick and Chelsey and Jessica and Lori and Linda and...

And we take pictures and I get to hold the beautiful little Mandy.
Flash!!!

Later we sit in a hotel room and chat and relax.  And connect anew.
"Roland, if you're gonna throw those peanuts, at least hit the cup!"
Bonk!  "0 for 9!  You're like Shaquille O'Neal shooting free throws..."

Connecting...

********************

Late, late Saturday night.  2:30 a.m.  Ah, finally asleep after another
late night.  BEEEP  BEEEEP  FLASH FLASH   "Please exit the building by
the nearest emergency exit..."

What IS that?  Who set the alarm clock that early?  Turn that darn thing
off!!!! Bam!  Crash!!!  Look out, Dean.  Get a light on!

Er....wait.  It's not the alarm clock.  It's the fire alarm.  Yikes!!
Evacuate.  Down the stairs.  I carry a child for a brief way; his mom
was tired.  Hmmm, no smell of smoke.

Downstairs.  Security guys stand by the front desk with their hands in
their pockets.  One of them's been eating lots of steaks over the years.
Probably nothing, they say.  You can go back up as soon as the fire
department clears it.

Sigh.

Well, Dean, at least we beat the crap out of that alarm clock.

***************************

Sunday morning.  Almost 7:30.  Almost overslept!  Yikes!!!  Gotta
introduce a speaker at 8.  Can't imagine why I'm groggy again.  Splash.
Whoosh.  Downstairs we go.  Breakfast buffet.  How are all these people
so awake and chipper???  Gimme some of those scrambled eggs.  Glug
glug!!!

Ready.  We start at 8.  Jacquie does great stuff on the Americans with
Disabilities Act.  At 9 Linda charms and inspires the young ones with
Moebius.  At 10 Effy teaches about theater and how to "transform"
objects.

Connecting...

****************************

Lunch.  Supposed to be barbecue.  And it is, well, sorta, in a hotel
food kind of way.  More raffle winners.  Lily's grandma donates a
portrait. 

Whoa, 1 p.m. time for yet another intro.  I'm used to it now, packed
room or no.  Our closing keynote speaker, Randy Snow...a former tennis
champ, in an accident, now paralyzed from the waist down.  But he
doesn't quit, and he teaches us why we shouldn't.  And why we won't.

It all comes fast now.  Closing slide show.  Beautiful pics and music.
All these beautiful people and their smiles from the heart.  Karla
closes with song.  Hugs.  Tears.  "Phyl---look at how many came to your
party."

**********************

We will never forget this conference.  What did it all mean, does it all
mean?  I dunno for sure.  I'm an observer, and a story-teller.  It's
what history guys like me do.  Ultimate meaning is harder to figure.

But I think of Steve Clarke, may he rest in peace; and I think of what
was said about him.  Steve was gone from home a lot.  Why?  "They need
us," he'd say.  The children with Moebius.  Their families.  Yes, they
need us.  Isn't that a big part of it?  But maybe not quite all of it.
Yes, they need us.  But we need each other.  The camaraderie.  The
fellowship.  The talking.  The fun.  The laughter.  The empathy.  The
advice.  The support.  The help.  We've all been down some of the same
roads.  You can't beat that connection.

This year the roads led us deep into the heart of Texas.  Lucky us.
Follow those roads.  Are they made of yellow brick?  Maybe not.  But
they lead you somewhere special...

****************************

Kevin
ksmant@iusb.edu