Meeting in the Middle

My Genium and I
hit the road
(with "Sandy" in the trunk)

Mile Marker 1190:

Google Maps says the drive should take 3 hours, 30 minutes, but I-287 has other plans.

As I creep inch-by-inch toward the Tappan Zee Bridge, confidence shifts into minor panic.

I'm on a highway in the middle of nowhere, ALONE.

I think of the amputees I met at the conference last month.  How they've all pushed past limits to find their independence.  When I left there, I promised I'd do the same:  I'd make decisions with my mind, not my leg.

70 miles to go...

So I squint into the snaking traffic.  Roll forward, one tire tread at a time.  Immerse myself in Radiolab.

East Hartford, Connecticut is not exactly #1 on Trip Advisor's "summer getaway" list.  But it's the midpoint between Vermont and Pennsylvania.  Perfect for a quick reunion with a few people I love best!

It starts with a text to my sister Sam.

Want to have lunch in Hartford on Sunday?

As I press send, I know it's a half-cocked plan.  In Vermont, her kids have colds.  In Philly, my leg is iffy.  Neither one of us is in the position to drive 8 hours.  But halfway?  That's tempting!  It's been months since we've seen each other.

Traffic crawls through Danbury.  When I arrive at the hotel 6 hours later, it's long past lunch time.

I’m not sure who’s more relieved -- me or Sam.  After driving 200 miles herself, she's been entertaining 2 toddlers in a hotel room!  Books and toys litter every corner.  The desk holds a stack of sticky gummy bears.

Look who's grown
up since Act II :)

My niece Riley flits around like a sprite with water wings.  My nephew Brennan sits cross-legged on the floor watching her come and go like a bouncing tennis ball.

Riley stops short when I take out my water leg. Her saucer-like eyes grow wider.  And wider.

“My swimming leg is blue,” I tell her.  But Riley knows this is more than a lesson on colors.  She swoops in for a closer look.

It’s a bit awkward – struggling into a prosthesis and bathing suit with a three-year-old's face just inches away!

I was so surprised,
 I sat straight up despite
the sutures in my belly!

Riley's only known me as an amputee, but this is the first time she's really NOTICED.  She doesn’t remember when she was 6 months old, and she road-tripped 500 miles to see me in my hospital room.
 



And she doesn’t remember Mile 15, when we were both learning to walk.

But now she looks carefully.

“I have one big leg and one little leg,” I tell her.   This, she will remember.

I can see her mind at work -- I have a swim leg.  She has floaties.




We head down to the POOL.

Which turns out to be much more exciting than a robot leg!

At dinnertime, I help Sam set up a picnic for the kids on the floor.  I squat to pick up crumbs from the carpet.  I lift the kids.  I even slide Brennan's crib across the room.  With these 3 beside me, I feel like my old self.  It seems there's nothing I can't do.

Pizza...

...B.Y.O. Cheez-Its :)

But when I take off my prosthesis for the night, I catch Riley watching again.  She stands behind me, one leg tucked underneath her body like a flamingo.

She holds one of my crutches as if taking my hand.  Together, we make our way across the room, hop by hop.

It's a quick visit.  The next morning, we pack up to head our separate ways.  As I tuck my still-wet bathing suit into a bag, Riley pops over to my bed.

"Where's your BABY LEG?" she asks emphatically.

Fully dressed, I look down at my Genium.  Here we go again....

But I'll take the questions.  Here, in this random East Hartford hotel, I don't feel different or singled out.  I just feel like an aunt.  And sister.

And that's definitely worth the trip.

Pizza:  $30

Gas:  $60
Hotel:  $100
Meeting in the middle:  PRICELESS

Defying Gravity

Mile Marker 1183:

One step after another, we climb up, up, and UP some more.

Inside the Academy of Music, Jen and I ascend a long winding staircase.  The steps are covered in bright, busy carpeting.  The steel banisters shift mysteriously from side to side.  Around each curve, the floor plateaus before the uphill slope begins again.   50 steps in all -- but who's counting?   It feels like 100.

“This is ridiculous,” a woman behind me grumbles. (For the record, she has 2 legs.)

As we climb higher, Jen and I pass signs -- 4th level, 3 floors to exit; 5th level, 4 floors to exit.  Finally, we arrive at the amphitheater section where our seats are located.  Five minutes till the show starts.  I head for the ladies’ room.  That's 7 more steps; 14 round trip.

By the time we get to Doorway C, both of our hearts are pounding.  My right knee is quivering.  I’m ready to sit down.   On the uppermost level, we feel lucky to have front row seats.  Until we see what comes next.

To get to those seats, we have to descend 10 more stairs – wide and steep – sans railing!

 
I hang onto Jen’s shoulder and hope her skinny-heeled sandals hold steady.  They do.

The lights dim.  The show, Wicked, begins.

Inside its socket, my left leg is not entertained.  I search for a more comfortable position to relieve the needle-like burning from too many hours in my prothesis.  I angle the rotator to bring the Genium up onto my lap.  It's not the most lady-like position, but it feels better.  

The guy across the aisle is even more restless than I am.  His face is lit by the blue screen of his cell phone.  He’s surfing the web.

I turn my eyes five stories down, to the excitement on the stage below.

When Wicked Witch Elphaba lets her talents shine, my leg and I listen up.  It's the catchiest song in the show:  Defying Gravity.  And she belts it out.

I'm through accepting limits,

Cause someone says they're so.

Some things I cannot change

But till I try, I'll never know....

Don't worry.  I won't be jumping on a broomstick anytime soon.  (The Genium doesn't have a flying mode anyway.)

But the last few miles have been packed with activities that seemed impossible when I first started this journey.   And each time I cross one off my list, it feels like DEFYING GRAVITY.

The locked knee works great!

I discover how to rock climb with my water leg...

Of course, it helps to have an incredibly brave cousin

and a leg-sized backpack! 

Then, on July 4th, I join my skate buddies for the very first time -- by BIKE...

My Schwinn has fewer wheels than the rest of the pack, but we keep up just fine!

And finally... a long-awaited beach day in Ocean City...

Only one leg gets cold!

With support from friends -- and brave cousin Tray -- I walk confidently into the 59-degree Atlantic!

"Sandy" gets sandy
but not sunburned!

Each step carries me farther from the days that pulled me down.  At Mile 1183, there's so little gravity, I could be walking on the MOON.

At the recent Amputee Coalition Conference, I stumbled onto a book called You’re Not Alone.  It's made up of courageous survival stories, written by amputees.  Each day, I open the book and read one or two stories at random.  By now the paperback binding's creased and worn.  Several pages are dog-eared.  Every time I pick up the book, I assume I’m nearly finished.  But day after day, I discover another story I haven't read yet.

For amputees, the early lessons are all about defying gravity.  Operating a machine like part of your body.  Strengthening your muscles.  Staying off the floor.

Over time, defying gravity evolves into something different.  It means finding a way to FLY even when the world weighs you down -- a feat much harder than hopping on a broomstick!

But I'm sure you do it, too.

In the hall after the show, Jen and I locate a well-kept Academy secret:  THE ELEVATOR.  We can't help giggling with relief.

But before we press the down button, an usher rushes over and bursts our bubble. "It's out of order," he says.  

Of course.

He points us in the direction of another elevator on the opposite side of the theater.  It doesn't seem worth the trek.

We choose the stairs.

This time, gravity's on our side.

Orlando Magic

Mile Marker 1160:

Around the corner from Disney World, someone waves a magic wand.  I become ORDINARY.

It happens in a crowded hotel lobby.  Metal prosthetics reflect against the shiny floor tiles.  Crutches, walkers, and wheelchairs are everywhere.  A seven-year-old bounces by, kangaroo-style, on two c-shaped carbon fiber running legs.

Suddenly, I am just one of the gang.

Sure, other hotel guests are scattered about -- prosthetists, physicians, family members.  Even my mom.

But here at the Amputee Coalition National Conference, those with 4 limbs are in the background.  It’s the ones without who really shine.

For me, the conference begins with a training course.  My classmates hail from South Florida to South Africa.  Some are beginner amputees, like me.  Others have been missing limbs their entire lives.  We talk about common issues:  pain, rehabilitation, grief, and loss.   We become tight as we laugh our way through role plays.  By evening, we're deemed Certified Peer Visitors, ready to help new amputees in hospitals and rehab centers around the world.

And that's just the first day.

I learn new tricks at every turn.  The next 3 mornings start with YOGA.  Mats go on the floor; bolsters and blocks, under our bodies.  Prostheses and wheelchairs are pushed aside.   When I first tried yoga as an amputee, I found more frustration than peace.  But here, we build slowly, focus on individual differences.  Like magic, I find balance, patience, and hope.  By the third session, I decide to try a "regular" yoga class when I get home.

At the next day’s SWIM clinic, I meet Carla.  We walk from the cabana to the pool together.  Bending over, she tugs down a skin-colored stocking.  Off comes her prosthesis.  I can't believe it!  Her leg looked so real that I assumed she was just someone’s family member.  I had no idea she was an above-knee amputee like me!

We climb into the pool; Carla without her prosthesis, and me with my aqua blue water leg.  Then Carla surprises me again.

“I just learned to swim 4 months ago,” she says matter-of-factly.  “I wanted to do a triathlon, but I didn’t know how to swim.  So I signed up for swimming lessons at the Y.” 

It's no illusion.  She did the triathlon.

By the end of the clinic, I’ve got a rough crawl and backstroke going.  Until Carla hits me with another zinger.

She tells me her prosthetic foot has a heel that can wear stilettos!  She'll be wearing them at the dance on the last night of the conference.  I've got to see it to believe it....

That evening, I go  BOULDERING with Ronnie Dickson, a Paralympic rock-climber.  He's not only an above-knee amputee, he's a prosthetist too.

Don't try this at home!

With the turn of a wrench, he detaches my Genium and, in its place, installs a tiny climbing shoe that would fit my 3-year-old niece.

I grab a size 6 shoe for my right foot. 

Ronnie demonstrates how to use my prosthetic side as a pivot to move across the rocks.  He says the short leg will keep me close to the wall and give me more control.  He's right!

Austin, a below-knee amputee
from Oregon, climbs too.

We leap on and off the rocks, climbing till our arms give out!

The conference overflows with speakers, workshops, and clinics.   I can’t take notes fast enough.  I want to soak it in, talk to everybody, savor each word, and do EVERYTHING!

Kinda says it all :)

I'm swept up in the fairy dust.  It fills me with confidence.  Fortifies my understanding of all I am in this new body.

Mom and I go from session to session.  We learn about limb transplantation and osseointegration -- the process of surgically anchoring the prosthesis directly to the bone -- two medical advances that'll gain ground in the next few years.

With Byron from Ottobock

We attend discussion roundtables where we share our stories and meet more inspiring friends.

I volunteer for a DNA study sponsored by Walter Reed.  They’re searching for genetic factors that influence phantom pain.  I donate a few tubes of blood and tell them about the phantom sensations I’ve had – Ankle Blades and the Stone Sandal, lightning bolts, burning, and itching.  They've all become more manageable over time, yet they still linger.  Just another part of life as an amputee.

One night, there's more magic in the air than usual.  I see a young man walking toward me down the hotel hall.

That guy’s wearing a prosthesis,  I think to myself.

And then an unexpected thought--
Wait a minute.  I'm wearing one, too!

For a split second – the first time ever -- I FORGET I'm an amputee!

It's the best trick by far.

At this conference, there's so much ABILITY, disability disappears!

On the final afternoon, U.S. Army Colonel Greg Gadson speaks.  Injured by an IED in Iraq, he is now a bilateral above-knee amputee who walks using two bionic Power Knees.  (Coincidentally, he's also an army colleague of my surgeon, Dr. B!) 

Col. Gadson's speech takes us from his injury, through his rehab, to his recent role in the movie Battleship.  He tells us that, as an amputee, you're never finished recovering.

“Every time you get a new foot, it’s like pressing the reset button,” he says.

The audience cracks up because it's true.  Shoes, sidewalks, sockets... there's no end to the unpredictability!

But the theme of his speech resonates with me even more:

“I don’t ask WHY,” he tells us.  “I just ask WHAT’S NEXT.”

It captures the spirit of every person I've met at this conference.  They’re moms and dads, professionals and athletes.  Resilient human beings inside and out.  They know there's no magic pill.  Yet they keep moving forward to live their lives.

I want to take it all home in a souvenir bag.

With Carla and Amy --
maybe someday
I'll wear heels too :)

At the closing ceremony, Carla is wearing her stilettos.  And surprise... she's not the only one!

Mom and I move together around the ballroom, giving hugs and snapping photos.

It's hard to say goodbye to all the friends we've grown to love this week...

Jennifer

Kelly and Hector

 Zack and Berni

Elena and Ariel

and Pierre

...to name just a few.
We're so close, it seems impossible we met just days ago!

The music and dancing goes on and on.  No one wants to break the magic spell.

But the next morning, Mom and I pack up and check out.  I take one last trip across the hotel lobby.  The tiles aren't as shiny without the glint of metal.  The space feels lifeless and sad, like an empty stage.

A handful of vacationing families check in at the front desk.  Limbs intact.

On our way out, I stop at the restroom.  As I’m washing my hands, a young girl in flowered flip-flops stands stock-still in the doorway, staring at my Genium.

“You like my robot leg?” I say.

Slight nod.  Eyes wide.  Mouth agape.

“It’s cool, isn’t it?”

She doesn't blink.

“There’s a computer in there,” I tell her.  (For kids that's usually the clincher.)

This girl doesn’t budge.

So I grab a paper towel and head for the door.  She watches me leave, in awe.

Show's over, folks.

Oh well.  Who wants to be ORDINARY anyway?

If you need a little magic -- or just a 3-minute vacation  -- watch this video :)

Click here!

To all my friends from the conference – Kelly, Hector, Amy, Priscilla, Mike, Carla, Jennifer, Doug, Ronnie, Austin, Tommy, Lisa, Pierre, Zack and Berni, Elana and Ariel, Arnold and Mo, DeeDee and Peter, Kurt, Mary, and Emma... Thank you for inspiring me in a way I will never forget!  Can't wait to see you all again in 2015!

And to Uncle Mike, Vicki, and the Cain clan -- Thanks so much for giving us a warm welcome to your Sunshine State! xoxo