My road came to an unexpected halt on November 9, 2010.

That morning, I was bicycling to work when a garbage truck turned across a city bike lane. I was in that bike lane.

A team of trauma surgeons saved my life, but they had to amputate my left leg. My body and life were forever changed.

The journey of a thousand miles begins with one step.

As I learned to walk again, I measured my recovery in steps and then miles. Over time that journey grew into something more -- a way of being in the world, wherever I go.

I am a person of ability and disability. I travel in the space between. These are my postcards.

Sunday, April 29, 2012

Glory

Mile Marker 423:

“Feels like I haven’t been here in years!” I said as my dad and I drove into the parking lot of Prosthetic Innovations.

Christine and Bonnie greeted us in the reception area.  Prosthetist Tim gave me a hug.

Then we got down to business.

Tim wrapped a tape measure around the circumference of my leg.  He examined my freshly un-sutured incision.  He plugged my Genium into the wall to awaken it from its three-week nap.

Then he got out a pull-bag.  Carefully, I lowered my leg into it.  Tim threaded the narrow end of the bag through the valve at the bottom of my socket.  He tugged gently.  Again and again.  And again.

Slowly, we eased my leg into the firm shell of the socket.  I winced and braced myself against the soreness and sensitivity.  With one last pull, Tim released the bag.

“Not quite,” he said peering inside the valve.  “But close.”

I reached down and poked my finger through the hole at the bottom of the socket.  I could feel the distal end of my leg and the tiny space below it.

Yep.  He was right, of course.  I wasn’t all the way in.

“Double up your shrinker this week,” he instructed.  “And massage.  Really get in there.”

“And lay off the bacon?” I joked.  (I'd rediscovered my dad's grilled cheese sandwiches.)

Tim told me we'd try the socket again next week.  My leg wasn't healed enough for walking yet anyway.  

Outside the eval room, I loped around on my crutches.

Always encouraging, therapist Jared egged me on toward Mile Marker 423.   Up the ramp.  Down the stairs.

Passing by the reception desk, I saw a basket of wristbands newly minted for Limb Loss Awareness Month.

No Guts.  No Glory. they said.

I put one on and felt a fresh dose of PROLIMB COURAGE.


No Guts.  No Glory.  

On the ride home, I let the words sink in.  They whisked me back to the ski slopes of junior high.

On those snowy weekend mornings, my friends and I -- layered in thermals, turtlenecks, and ski jackets – piled into a township school bus.  Old, creased lift tickets dangled from our zippers.  Brown bag lunches crinkled against the vinyl bus seats.  Mittens fell onto the dusty floor.

Our excitement lit up the dark sky as we headed to the Poconos.

At Big Boulder Mountain, I conquered my first black diamond.  I remember bouncing over moguls and steep drop-offs.  Skidding over patches of ice -- the hallmark of Pocono skiing.  And when I finally reached lift line at the bottom of the hill, that unbelievable mix of VICTORY and relief!

Late in the afternoon before we boarded the bus home, my friends Jodie, Missy, and I stopped into the lodge’s gift shop.  With 13-year-old pride, I pulled a soggy dollar bill from my pocket and bought a black diamond patch for my jacket.

NO GUTS, NO GLORY,  it pronounced boldly.


After my visit to Prosthetic Innovations, this week returned to its normal pattern.   I did some schoolwork and ate some lunch.  Checked e-mail.  Read a book. 

But by afternoon, I found myself restless.

I gathered up my crutches (and courage), and walked into my parents' garage.  I pressed the button to raise the electric door.

The driveway, covered in wind-swept pink petals, called to me.

No Guts.  No Glory.  I thought.

Drawing in a breath, I headed outside into the sunshine.

I’ll just go down to the corner, I told myself.  We’ll see how that goes.


And with the first step, I found myself back at last summer's Mile Marker 7 -- that very first trip to the mailbox.

My mind raced.  What if I fall while my parents are at work?  What if I land on my leg?  What if I injure the incision site?

These thoughts are usually enough to keep me inside.

But not on this day.

I was tired of thinking about what I couldn't do.

If guts meant arm strength and glory meant freedom, I experienced a sudden surge of both.

I hobbled up the driveway to the sidewalk.  Down the sidewalk to the corner.  And back.

Confidence boosted, I crutched in the opposite direction toward the house next-door.  And then to the next house.  And the next.

With each step forward, I examined the pavement for bumps and ruts.  I lifted my crutches high enough to clear the curb-side grass.

I noticed things the neighbors overlooked.
A thousand wishes!
A good sign?


Soon, I reached the end of the street where the donkeys waited in a field of dandelions.

Resting against the wooden fence, I watched them graze.


And then I began the long walk back.

At home on the computer, I mapped out the trip.  Four-tenths of a mile.  838 total steps -- with two legs, that is.


No Guts.  No Glory.

I took a long swig of water and considered the week ahead.

I swore to shrink and massage my leg.  To desensitize my nerves against the pain and pressure of getting back into my socket.  To cut out bacon.

To do everything possible to fit into that prosthesis next week.  To return to my WALKING  life.

No Guts.  No Glory.


Limb Loss Awareness Month


And many miles to go.

Sunday, April 22, 2012

Life Is...

Mile Marker 419:

The Life is Good store is quite possibly the happiest place in Montgomery County.

Mile 419 begins when Bosco breezes up from Delaware.  In her silver Subaru, she whisks me away from my parents’ house.  Sunglasses on, we roll down the windows.  We’re headed to Life is Good.

It’s a store that reminds you to keep your head up.  A cool assortment of t-shirts, bags, and coffee mugs – all POWERED BY OPTIMISM.  (It's written on their catchy bumper stickers!)  There’s even a heart-shaped sponge beside the cash register. 

Sales clerk Natalie laughs as we chalk up our latest mile outside the store.   I give her my Thousand Miles bracelet.  "Bring in more!" she says. "I'll put them on the counter!"

How I love -- and miss -- shopping!   With only 50% of my legs absorbing 100% of the weight, my capacity for standing is limited.

So we check out Kumo, a creative new sushi place in the same shopping center.  Mmmm.  

Life is Good.


The next morning Mom drives me downtown for the first skate of the season.

Well, not exactly for the skate.  

But with Susan and Rocco's support, I hop my way into the post-skate brunch.

Skating or not, it's GOOD to be part of the club!


On Monday, friends Susan and Karen drop by the house with lunch  – what a treat!

Afterward, Susan has to return to work, so Karen and I stroll down to the end of my parents' street.  There's a little farm with three donkeys grazing in the pasture.  We can't help chuckling.  Karen and I live a few blocks apart -- in South Philly!

It's short walk but quite a hike on crutches.  Sweaty and tired, I celebrate the end of Mile 419. 

Life is good. 


Mile Marker 421:

It gets even better.

On Wednesday, my friend Cécile stops by, toting treasures from France.  Homemade quiche and - plus bonne -- her toddler niece Capucine, visiting from Paris.

As we eat, Capucine shows off with beaucoup finesse.  She waves and points, chattering away en francais.   She approximates early words – “regarde!” “descende!” “encore!

I try to keep up but my French is rusty, comme un vélo sous la pluie.

I vow to start practicing again soon.


A few days later, my friend Suzanne pops in with her adorable girls Maddie and Violet.  And a picnic lunch.

At a neighborhood playground, we feast on quinoa with cucumber, berries, and lemon-basil dressing.  Maddie dubs it “Rainbow Salad.”  

Violet downs her peanut butter-banana sandwich and takes off joyfully for the swings.


"What happened to your leg?" asks a young boy playing nearby.

I mumble something inaudible, ending with “…I’m getting a new one soon.”

I can't think of anything to add, so I stand still -- balancing -- watching his little mind absorb this.  Somehow a "robot leg" is much easier to explain.

At a loss, I grab my crutches and hobble away to find Violet.

A short time later, we break into the cupcakes.

No, life isn’t always good.   

But there are a few things that make it BETTER.

Wednesday, April 18, 2012

Australia

Mile Marker 418:

Some people look twice.

Others look away.

The officer writing our parking ticket wouldn't look AT ALL.

Her eyes refused to leave my face.

Even as my dad pointed to the 30 Minute Loading Zone sign.  Even as we insisted we'd been there less than 30 minutes.

Even as I balanced on one foot.

But I know how she felt.

I was always the "look twice" type.  Nosy, curious.   Interested in people, in a well-meaning way.   I was the kind of person who wanted to see everything.  To always learn more.

Until I had to look at myself.


Which brings me to Australia.
  
When the accident happened, it landed me in an alternate universe.

For months, an IV in my arm pumped potent liquids like Vancomycin, Dilaudid, and (ouch!) Potassium.

I drank nothing but icy cups of Gatorade -- and Boost, when pressured.

Prepping for surgery became as routine as brushing my teeth.

Home was a faraway place my family went each night.  Without me.

When I dared to peek under the hospital gown, my body was different too.

Four-inch metal sutures stretched like unraveled paperclips across my abs.   White bandages and thick tape wrapped both my legs.   A Wound Vac machine slurped and slurped to eliminate the infection.

Each morning, my mom helped me get washed.  We dipped the washcloth into a pink basin of water and gently cleaned my body.

I squinted through eyes that didn't want to see the damage.

There was only one spot where I could safely rest my gaze -- an oasis in this strange new world.

AUSTRALIA.

That's the nickname I gave the ragged patch of "road rash" just above my left hip.


As a city skater, I was a ROAD RASH VETERAN.

I'd slipped, tripped, and stumbled over some of the best streets in the country.

One summer while racing down the Ben Franklin Parkway, my skate clipped against my brother Mark's.   I fell hard, scraping the back of my thigh so badly I couldn't put on underwear for a week!

So while my newest piece of road rash didn't exactly please me, it was comforting in a familiar way.

And from my angle, it resembled the shape of... well, AUSTRALIA.

“How’s Australia?” the doctors would ask when they came in to examine me.  I’d smile.  A new nurse on duty would raise her eyebrows.  It became an inside joke.

Wheeling me into the operating room one morning, Dr. K said, “We’ll clean up Australia while we’re in there.”

It sounded like a campaign promise, but I knew what he meant.  When I awoke, that patch of road rash bore a clean bandage, and its dark flaky scab was gone.


There's a classic children's book by Judith Viorst about a little boy named Alexander who's having a ‘No Good, Very Bad Day.'   He doesn’t find a prize in his cereal box, and he can’t buy flashy shoes like his brother.

He swears he’s gonna move to Australia.

I know it's a little unusual to name one's road rash.  But the desire to escape is not.

I guess I just needed a way back to my old world.

And in the tiny world of Room 7206, Australia was the ticket.


Later in the rehab hospital, the nurses patiently taught me to change my own bandages.  The PTs taught me to massage and Ace wrap.

"Love your leg, Rebecca!"  sang Dr. L each day in her fancy European accent.

I finally found compassion for my new body.


It's been a year and a half.  All those scars are still with me.

Even the road rash.

It remains just above my left hip, a small pink mountain surrounded by a sea of pale new skin.

In the shape of – you guessed it – AUSTRALIA.


These days, without my prosthesis, I feel exposed.   BARE.

Like the whole world can see my wounds.

People look twice.  They look away.  Often they stare.


I don't blame that parking officer for her discomfort.  I don't even blame her for writing that ticket -- although we didn't deserve it!

"She wouldn't even LOOK at me!"  I said angrily, tossing my crutches into the car.  That was it.

As painful as it might be, I want to be seen as a whole person.

Prosthesis or not.  One leg or two.

Australia and all.

Wednesday, April 11, 2012

Love the Ride

Mile Marker 417: 

I know we’ll be fine when we learn to love the ride....

I don't.  (Love the ride, I mean.)

But I do love the TV series, United States of Tara.

One week post-surgery, and this show's catchy theme song runs through my head day and night.

It's my newest Netflix addiction.  The story of a sweet, quirky family trying to keep up with their mother’s dissociative identity disorder.  As Tara transitions through various personalities, her husband and kids scramble along, maintaining a "normal" life the best they can.

I’ll tell you, it makes standing on one leg seem pretty darn simple!


Your vote for wheelchair miles was overwhelming.  I have to say, I'm flattered by the support.   But I'm not quite ready to count them.  Not yet, anyway.

On Monday, I finally reached Mile Marker 417.
FAIR AND SQUARE.

Yes, it's slow on crutches.  My Genium sleeps against the bedroom wall as I hobble through the house, hop by hop.

Dad pushes me around the block in the wheelchair.   Mom drives me to the local CVS.

Lots of riding. 
Not much walking.


From the shelves of CVS...
I'm moving, but like traffic on the Schuylkill. 

The bumper-to-bumper kind where you can't find a good song on the radio, and you can't see the wreck up ahead.  When all you can think about is how stuck you are and how late you're going to be.


This week my surgical pain receded.

And those old familiars -- Ankle Blades and the Stone Sandal -- bounded back like restless siblings home from sleepaway camp.

New sensations arrived with them.  A bent knee.  A clenched muscle.  Pulling.

I can’t tell if they're from the sutures or here to stay.  They arise sleepily each morning.  By evening, they throb.

In bed, I sink into another episode of Tara.  My favorite distraction.  I join their ride and forget about mine.


On Sunday afternoon, I found an hour of peace in the sunshine of my parents' back patio.

Across the yard, the huge willow tree caught my eye.  Its branches hovered above the roof of the house.  Its green-yellow leaves flapped against the sky.

It had grown so TALL!

At 7 years old, I went with my dad to fetch that tree from our local nursery.  On the ride home, I was relegated to the back seat.  The tiny willow rode shotgun; its dense ball of roots rested against the floor mat.  Its thin trunk stretched out the passenger window like the neck of a baby giraffe.

As we drove, I watched its delicate branches gust violently in the wind.  I was nervous about it, and told my dad so.

He joked with me.  “It must be weeping!” he said.  (Ha ha -- weeping willow.  A "dad joke," I know...)

But we repeated it over and over.   As long as we kept laughing, I knew that tree would be ok.

From my seat on the patio, I squint upward and recall that happy ride.


But these days, I've been thinking mostly about the months I spent here LAST YEAR, recovering from the accident.  The nights of sleeplessness and pain.  The days of crying, worry, and adjustment.

Three frightening rides to the Emergency Room.

These are the rides that haunt me most.  They weigh me down with their heaviness.  And when I try to push them away, they push back.

They shove aside all those other rides -- family road trips, carpools, rides to school -- that belonged to this house for years and years.

They make me forget how far I’ve come.

So that now, when I wake up in the shadow of my brother’s old bedroom, this is what I do:

I fix the covers, flip over my pillow, and turn on the next episode of Tara.

I get lost in it.


I am trying to love the ride.  

To make the most of these slow days.  Even if I can't get out of the house.  Even if sitting or lying down is easiest.

It's ok.

I catch up on e-mail.  Do schoolwork.  Read novels I wouldn't usually have time for.

I soak up the cheerful energy of my nieces (although they're exhausting!).

I coast along on the strength of a family that anticipates my every need.



I think about WALKING again.

Problem-solving.   Balancing.  Watching my step.  Measuring each movement.  Searching the sidewalk for obstacles and traps.

In some ways, riding is harder.  I have to be STILL.  


I know United States of Tara is fiction.  But more and more, I identify with those characters.

For as much as their theme song promotes it, they haven’t yet learned to LOVE THE RIDE. 

They've learned to ACCEPT it.

Fast or slow, rough or smooth.  No matter who's driving.

Now there’s something to aim for.


Here's the theme song:
http://www.youtube.com/watch?v=1zlBBkKyM_g
Watch out... You'll be singing it, too!

Thursday, April 5, 2012

Walking Wish List

Mile Marker 416 (or 417?):

If my feet don't touch the ground, do the miles count?

Monday’s surgery was pronounced a success.  And, in the fog of leftover anesthesia, I found space to dream.  

About walking of course.

Places I would walk if I could.
Places I will walk when I can.

Here it is --  MY WALKING WISH LIST:

1.       TAKE A HIKE.  I’ll hit the trails, crunch through leaves, stumble over rocks, and leave footprints in sticky mud.  I'll climb hills until my right calf aches.  I’ll ford fallen branches and rock-hop across shallow creeks.  In snowshoes, hiking boots, or sandals – in Vermont, the Poconos, or Wissahickon Valley -- my feet will be ready!

2.       SHOP TILL I DROP.  I’ll trace those walkways of the mall complex at King of Prussia.  The sprawling Promenade of South Jersey.  The outdoor wonderland of Old Orchard.  Get ready shopping partners – you know who you are!   Dust off your coupons and credit cards.   It’s gonna be a long day!

3.       FUN IN THE SUN.  I’ll dig my toes into the thick, wet sand along the water.  I’ll feel the waves lap against my ankle, the grains of salt prickly against my skin.  I’ll stroll along any beach, anytime.  Ocean City, Lake Michigan, Frejus, Arcachon.   I'll find a million shells.  And my blue-metallic “water leg” will glimmer like sea glass.  

4.       RAINY DAY SCHEDULE.  When drizzle knocks against my bedroom window, I’ll wake up late and meet the Sunday crowd for brunch.   Fueled up, we’ll tour the latest museum exhibits.  The Art Museum and Liberty Museum.  Springsteen at the Constitution Center.  I won’t worry about handicap entrances or fatigue on my feet.   Nothing will stand between me and the culture of Philly.

5.       WHEN THE FLOWERS BLOOM, I’ll explore the parks.  The Grounds for Sculpture, Longwood Gardens,  Rittenhouse, Central Park.  I’ll dodge kids on scooters along the winding paths.  I'll inhale the breezes of spring and the heat of summer.  I'll savor the shade of a slow afternoon.


6.  MOTHER'S DAY.  Not this year, but maybe next,  my Mom and I will return to the Parkway for our annual Race for the Cure tradition.  That 5K won’t tire us out or scare us off.  And afterward, we’ll walk even farther!   We’ll celebrate more mother-daughter days to come.


You'll see my sign!
7. MORNING NEWS.  It’s a hassle to get myself out in the morning, but not TODAY!  I’ll rise at dawn in a hotel that overlooks midtown Manhattan.  I’ll wander outside and stare up at the skyscrapers.  Strong latté in hand, I’ll crowd up to those metal railings along Rockefeller Plaza.  I’ll wave to Ann, Matt, and Al and hope for my 5 seconds of fame. 

8.  MAGNIFICENT MILE.  In the glow of holiday lights, I’ll be daring! Bundled up in boots, scarf, coat, and hat – in the Chicago way – I’ll brave that lakefront wind.  I’ll see my frosty breath under the white sparkle of the Water Tower.  Then I'll warm up with thick stuffed pizza that can melt the sidewalk ice.  And when snow turns to spring, I’ll return...with my bike.

9.   BONJOUR.  There will come a day when I’ll drag my luggage down that jet-way to board my long overdue flight to France.  I’ll see those olive trees and walk those steep sidewalks; the ones that were all cancelled in 2010.   I'll visit my French family, and experience  those markets, cafés, and vineyards encore à pied!

It's a WISH LIST,
after all!

10.   AND THEN….  When I’m all walked out, I’ll retire to my favorite spot along Kelly Drive.  I'll plop down on the curb and lace up my skates.  Then, I'll crouch low and push off.   Hands clasped behind my back, I’ll weave in and out between runners, and bikers, and – well -- all those "newbie" skaters.  



Yesterday as I crashed on the couch, my brother informed me it was "National Walking Day."

My dad laughed and replied that it was “National Hopping Day” for me.

Really, it was neither.

My biggest accomplishment was changing my bandage and checking out my newest set of sutures.  (Supervision provided by Uncle -- a.k.a. Doctor -- Steve.)

This afternoon, my dad pushed me around the block in the wheelchair.  My leg and I are taking it easy for a few weeks.

But if I'm more COMFORTABLE in the long run, a month is a very small price to pay.

Do the miles count if your feet don't touch the ground?
Let me know what you think...

Because in a month or so, I've gotta pick up the pace!

For now, I'll settle for DREAMING BIG.

Tell me, on a good walking day where would YOU go??

Sunday, April 1, 2012

How Lucky

Mile Marker 413:

It seems like a long time ago that Dr. J sat by the side of my bed and told me his lucky number was 13.  

At that time, on the morning before my 13th surgery, I knew he was just reassuring me.   Urging me gently forward.  Toward a procedure so necessary, I had about as much control over it as I did over the stormy weather outside. 

I never thought I’d consider 13 my lucky number, too.

But on Friday night, as the Mega Millions Jackpot was drawn, I passed Mile Marker 413.   

In Atlantic City.

Before you get all excited, I did not win big at the slots.  Or the roulette table.  Or at blackjack.

But I did win an honor all my own.   

At the Hot Topics in Trauma conference, I was the patient selected for the case review presentation.

Late in the afternoon, a crowd of 150 -- paramedics, EMTs, fire rescue captains, nurses, doctors, and therapists -- gathered to hear the specifics of my accident, injuries, complications, and recovery.

I chose to wait out in the hall. 

I have my own memories, and I wasn't quite ready to embellish them with new details.

Still, I learned a few things.  How important it was that the ambulances (two of them!) arrived on the scene and transported me quickly.  How carefully and quantitatively my surgeons weighed the options before deciding to amputate my leg. 

And how, after many, many hours in the Operating Room, they just had to STOP.  My body had simply been through enough.

After the presentation, I had the chance to tell the story from my own angle.  And to say thank you.  Not just to my team but to EVERYONE in the room.  

To all these helpers and healers who rescue people like me every single day.   

Later that night, a paramedic named Pat told me that when he arrives on a scene, he often tells the patient, “I’m not a stranger.  I’m just a friend you haven’t met yet.”

Over the last 16 months, my medical team has become more than friends.  They've become family!  

With a traumatic injury, you don’t get to make choices.  And as much as you try to hang on, there’s a point when you realize that the outcome just isn’t in YOUR control.    

Surrounded by my amazing team!
Dr. M, Deb, Julie,
Elly, and Dr. Josh
That you have to depend on others.

But hopefully there’s also a point when you realize how very, very LUCKY you are.

Mile Marker 413 was that point for me.


I’ve met many people along this journey who didn’t have a choice about what happened to them.  Victims of fires, or explosions, or terrible highway accidents.  People who were living their lives one moment, and critically injured the next.

You could say luck of the draw.

But the ones I know are ALL fighters.  They’ve become experts in a world that was not of their own choosing.  They push so hard every day to make the most of their lives.  

And in that way, they do have a choice.  At each difficult moment, they DECIDE to do more than just get through.

How lucky I am to have landed among such inspiring peers.


With surgery number 14 scheduled for early tomorrow morning, I turn to my teammates once again.

ALL OF THEM. 

For guidance.  For inspiration.  For the strength to push ahead.

Especially at times like this.  When the road before me is rough and hard to navigate.

Dr. M tells me not to worry.
Nurse Deb reminds me I have all their support.

Prosthetist Tim says he thinks this'll be my last speedbump for a very long time.

Friends and family call to wish me luck.

ALL of their words encourage me forward.


I heard there were three winners in the Mega Millions Jackpot.  And 100 million players. 

Tough odds.

I didn’t even buy a ticket.  

Because I know....
When the real-life numbers are drawn, I've already got the LUCKY ONES covered.


Special thanks to my "Jeff team" for making me feel like a WINNER this weekend (and always)!


Want to see a few of my courageous teammates?  
Check out this new video from Team Prolimb -- and spread the word!
http://www.youtube.com/watch?v=f1yAYZ69_jM&feature=youtu.be