Underdog

Mile Marker 1260:

It’s an Underdog morning.

Between 5 and 9 a.m, I take my socket on and off at least 5 times.  It pokes against my butt bone, rubs blisters on my inner thigh.

Trouble I don't need today -- on the first day of school.

I go through the motions of getting ready.  Brush my teeth at the bathroom sink.   Eat breakfast.  Pack lunch.

But my prosthesis won't cooperate.  The top edge of the socket digs into my skin.  The silicone liner squeezes.  In a last ditch attempt, I add a thin prosthetic “sock,” hoping to push things up from the inside.

“Walk it out,” I growl impatiently, pacing across the bedroom.  The socket bites back.

This is my third school year since the accident, yet mornings like this land me right back in 2011.

I grab my backpack anyway.

On the 10-minute commute through Chinatown, I squirm against the car seat.  I walk through the school lobby in pain.  And by the time I reach our team's office, I'm ridiculously close to tears.

My first year back was riddled with absence and discomfort.  Last year, I missed the entire fall because of surgery.

I wanted this school year to be different.

A line of second graders files by in the stairwell.  Each head of hair is neatly combed; each uniform, one size bigger than last year.  They're quiet and orderly, pumped up with first-day jitters.   I stand on the landing as they pass by.  Their eyes meet mine.   And then in recognition, they glance toward the robot leg. 

They should be used to it by now,  I think.

I should be used to it by now.

I last an hour at school.  Finally, with apologies all around, I head home to take off my leg – temporarily defeated.

If you've been following my journey, you know prosthetic fit is a process.  Recent mileage proves it.  At one visit, Tim attaches a pylon to outset my knee.  He pads the socket.  He shortens the ankle.   He works systematically.  One change at a time.

Inscribed on the wall of Prosthetic Innovations...

At home, I mirror Tim's method like a scientist.  I switch to a new liner.  I coat the raw spots on my leg with Neosporin.  I position the socket at slightly different angles.  I even try new underwear.

Dis-as-sem-ble!!!

And when I can’t stand it any longer, I do some mechanical work of my own.

...as long as I've got
a walking partner!

Eventually, the only option left is crutches.  On a recent Saturday night, my friend Mary and I order a pizza.  Then she coaxes me out of the apartment -- my first public appearance sans leg in over a year.   Even in hard times, one thing remains true:  I’ll still walk for ice cream....

Sadly, I leave the first-day-of-school hustle behind.  At an emergency appointment, Tim takes my socket into the lab.  Determined to stop those blisters, he trims down ¼ inch of carbon fiber from the interior edge of the socket.  When he returns, it seems to fit better.

By late afternoon, I head to the rehab gym to give the newest changes a test drive.  On the treadmill, I walk a 22-minute mile.  There's no incline and it's slower than usual, but I call it a win.  This morning I could barely walk from bedroom to kitchen!

Next I move to the rowing machine where I meet Duke, pedaling the bike next to me.  The shiny red stone on his ring catches my eye.  When I look closer, I notice the Phillies insignia.

He generously lets me model it!

Turns out, Duke worked for the fightin’ Phils most of his life.  When they became World Champions in 2008, he won right along with them. 

It’s a World Series ring!!!

With Mark, Rocco, & Susan

We talk about the tough summer the Phillies have endured.   I tell him I went to the August 6th game – one sparkling night in a streak of losses.

 

Duke’s wife Cindy tells me she used to be a nurse at Jefferson.  (It's a sign, right?)  It gets me thinking about how a strong team pushes you up from the inside.  How even in the midst of a losing season, there are moments that shine bright.

What a day.  My school team wishes me luck and says they’ll see me tomorrow.  Tim takes my socket back for yet another tune-up.  And finally -- at least for now -- I walk without pain.  

An Underdog start with a World Series finish?  

Maybe it's a trend for the new school year!

Thanks to Robert for wearing his Underdog jersey on the day I was feeling... well, like Underdog!

Day 3

Mile Marker 1230:

It’s hard to imagine my doctors before they were doctors.

But at Mile Marker 1230, I get a glimpse.  At a horseshoe-shaped table in a hospital conference room, sit a dozen first-year med students. 

Their short white coats are freshly pressed.  Their ID tags dangle proudly, minted just days ago.   

They are brand new DOCTORS-TO-BE.

The instructor of the class nods for me to tell my story.  So I start at the beginning.

“Two and a half years ago, I had no idea what went on inside this building,” I say.  “It was just a place I rode past on my bike.”

Then I move on to November 9, 2010.  The day I became a patient.

I tell about the bright, frenetic trauma bay, where Dr. M’s voice wrapped me in much-needed calm.

I describe that first critical week:  surgery after surgery, compartment syndrome, amputation.  Seventeen units of blood.  And then what came after:  infection, 7 wash-out surgeries, a skin graft, and 6 more hospitalizations.

I tell them how long the nights were, how much I feared being alone, and how many months passed until I regained faith in this dangerous world again.

As I talk, my eyes travel around the room.  I try to look past the white coats and pressed shirts to see the people underneath.  Are they kind?  Nervous?  Eager?   What kind of doctors will they be?

This is their THIRD DAY of medical school.

I’m touched -- but not surprised -- that, at Jefferson, this is where learning begins.   

Introduction to Clinical Medicine.  And the very first topic:  "Narrative Competence."  It says so on the agenda sheet:

Caring for patients begins with understanding the stories they tell.

I should have known.

If I wind back far enough, I can see my own Day 3 at Jefferson -- swollen with fluid, covered with bandages, pumped with tubes.   Lying in Critical Care, I was virtually unrecognizable.  A multi-layered problem to be solved.

Truly, I don't remember that week.  I was in and out of surgery so much they kept me heavily sedated.  But my Mom tells me that early on, my friend Andy, who worked in the area, dropped by the hospital.  He stopped short at the doorway to my cubicle. “That’s not Rebecca,” he said in a frightful whisper.  My brother Mark steadied him, escorted him back into the hall.

The hospital staff told my parents to bring in photos of me from BEFORE the accident.   They filled the bulletin board of my room. 

“She’ll get back there,” the doctors and nurses reassured us.

I always guessed those pictures were for my family’s benefit.   But now I wonder differently.

If I can’t imagine my doctors before they were doctors, how could they imagine me before I was their patient?

...but admitted I had more
siblings than they could
keep track of!

Of course as the days wore on, we got to know each other.  They learned I was a teacher and a skater.  They checked my breakfast tray each morning to make sure I ate my bacon.  Through daily ups and downs, they became like part of our family...

Just standing in the doorway, my doctors could make me feel better.

“Tell me I’m gonna be fine,” I’d say, often through tears.  And when they said it, I believed them.

I recently read an article about the body’s ability to heal itself, the hormone releases that actually fight against pain.  It’s the reason Advil starts to work the minute you swallow it.  (It doesn’t really, but once you’ve got that hope, your body kicks in its own pain relief.) 

Research shows that a doctor who LISTENS can have exactly the same effect.

I remember med student Emily who visited me every morning at 5:30 a.m.   She’d tap lightly on my door, even though it was always open.   “How are you feeling today?” she’d say softly.  Then she’d bend over my bed.  Listen to my heart.  Take a pulse from my foot.  Small gestures.  But so many nights I lay awake, counting the minutes till she arrived.

I want to tell these future doctors of the POWER they carry in their hands and their words.  That their companionship with patients and families will be REAL.  That what they say will become TRUTH – whether it’s wonderful (You will walk again.) or terrible (You won’t.).  And that how they say it will make all the difference.

But I've gotta wrap up now.  My 20 minutes are over.  I'm not the only patient speaking today.

So I finish with this:

“When I saw that first med student each morning, I knew the long night was over.”

As I look into their faces, I imagine the impact they'll have over the next 4 years.  They pay attention.  They ask good questions.  They really seem to CARE.

It's only Day 3.  I picture it like my third mile.  Even in 1000 days, they'll still have much to learn.

Patients are more than just patients.  Doctors are more than just doctors.  And the place where they meet?  It's much, much more than a hospital.  

It’s a place where HEALING happens.

Good luck Jefferson Class of 2017!  Thanks for letting me be part of your first week!

Legless

Mile Marker 1225:

Different mailbox.  Same dilemma.

If you’ve been following my journey from the beginning, you might remember Mile 7, in which I took a harrowing 7-minute hike to the nearest mailbox.  My first adventure ALONE with a new leg.

More than 2 years have passed.   Now my Genium and I move like old friends.   Together we're willing to tackle almost anything – escalators, cobblestones, even trolley tracks.   Of course, I'm always more comfortable with a partner by my side.  But when going solo, the LEG makes the difference.

The problem is, you can't wear a prosthesis all the time.

At the conference last month, the leader of our discussion group asked, "Are you reluctant to go out without your prosthesis?"

My answer:  a resounding YES.

I've met amputees who, for one reason or another, don’t or can’t wear a prosthesis.  With wheelchairs or crutches, they push courageously ahead.  They go to work, they shop, they raise children.  One woman I know is a preschool teacher; one guy, an awesome dancer.  I admire them all. 

Because when it comes to going legless, I’m still miles behind.

At Mile Marker 1225, I try to catch up.  One step -- or hop -- at a time.

...and with Mark!

The sun is shining.  The weather's refreshingly cool and dry.  The morning starts with a bike ride on Kelly Drive.  With leg...

But even as I lace up my biking shoes, I know it's going to be the last hurrah of the day.

My socket keeps losing suction and the rubs have only worsened in the past few weeks.  Each time we stop, my leg comes loose.  I remove my left foot from the pedal and press it into the ground.  This expels air from the socket valve -- a.k.a. gets me back in my leg.

When I come home, I take off my Genium.  Legless, I hop around the kitchen to make lunch.  I'm pretty productive.  I do laundry and dishes standing on one leg.  Sitting down, I pay bills, catch up on schoolwork, and start a new novel.

But when evening rolls in, a soft breeze beckons through the windows.  It rustles the leaves of my houseplants.  I hear neighbors chatting outside.  Suddenly, I feel very closed in.

In this apartment -- unlike my old house -- I’m not confined to an Upstairs Life.  The only limits are the ones I set myself.

So I decide to venture out.  TO THE MAILBOX, again.

It's tough to carry things on crutches.  So into a small backpack, I toss my phone and the book I’m reading.  If the trip to the lobby goes well, I'll push further out -- into the building courtyard.

I'm plenty agile on crutches, able to leap computer cords and carpet edges in a single bound.   But that confidence only stretches so far.  In the doorway of my apartment, I freeze.  There's a boundary line here.  On the other side, I’m a coward.

To push forward, I draw energy from one of the bravest amputees I know. My friend Jen lives on her own, like me.  But unlike me, she ventures out alone -- with or without her prosthetic leg.  To access her apartment, Jen navigates 20 stairs.  One day, she showed me the straps she'd constructed to carry her walker up the steps.  She's not much taller than I am, but she hoisted that walker like a backpack onto her shoulders.  And you should have seen her climb those stairs!

I take a deep breath, channel my inner Jen, and hop over that line.

In the lobby, there are 2 guys waiting to ride up in the elevator.  “Hey,” they say, as I step off.  We recognize each other, but they’ve never seen me legless.  Not many people have. 

To their credit, they don’t do a double-take -- not while I’m watching, anyway.

I start toward the mailroom.  At first glance, our building seems handicapped accessible.  It has elevators, single-floor apartments, and wide hallways.  

But look again.  To get in and out, you have to push and pull 2 sets of double doors.  Then, to get to the sidewalk, there's an iron gate – even heavier than the doors.  With crutches, these feats are difficult.  In a wheelchair, they'd be near impossible.

I place both crutches in one hand.  Give the first set of doors a push.  It's wobbly, but it works.  The door opens.

 

I slide the mail into my backpack.  Mission #1 -- complete.

The next set of double doors, slightly heavier, leads into the brick courtyard.  I pause in front of them, peering through the glass.

Just then the guys from the elevator reappear, this time with a small brown pug on a leash.  “Can we get that door for you?”  they ask on their way out.

“No thanks,” I say.  I’m waiting for someone.”  (I'm not, of course, but it just pops out.)

I want to open these doors myself, and not in front of an audience.

I let the guys pass.

Now or never,  I think.  What would Jen do?

As gracefully as possible, I transfer the crutches to one arm and lean my entire body weight against the left door.  With one large hop, I'm out!

Thankfully, there's no one around.  Alone on the walkway, I crutch over to a table and set down my backpack.  Then I look up.

There are 4 buildings in the complex, the tallest about 10 stories high.  But they rise around me like skyscrapers.  Windows are everywhere.  My little leg is on display.

Even sitting down, I feel inexplicably vulnerable.  The slightest movement makes me self-conscious, like a dream where you find yourself naked.  My loss, exposed for anyone to see.

A few people pass by on their way home.  They glance at me maybe a split-second longer than usual.  My crutches are in plain sight, but my leg is masked by the tabletop.  No one looks long enough to notice the truth.  

I am LEGLESS.

For 40 minutes, I sit there.  I open the mail.  I read my book.  I try to enjoy the breeze.

Two years ago, that first trip to the mailbox was a starting point.  This one illuminates how far there's still to go.

When the sun sinks below the rooftops on 3rd Street, I head back inside.

Relieved.  Lighter.  One hop closer to freedom.

What's the Story?

Mile Marker 1200:

With a backdrop of guitar and tambourines, I tell a Cliffs Notes version of my story.

We're at the Gathering of the Vibes, a 3-stage music festival packed with new millennium hippies -- and their kids.

In the rainbow colored kiddie tent, my niece Riley plays beside me, a rug-rat in tye-dye.  She's been exploring the retro toys -- musical instruments, pinwheels, even a Sit and Spin.  But now she makes a beeline to something way more fascinating:  an infant in a bouncy seat.

Riley inches closer, grubby hands reaching for the baby girl's tiny fingers.  "Don't touch," I say gently.  "Show her the toys."

The baby's mom and I start talking.  She tells me they're from Massachusetts, but her husband went to school in the Philly area.  Undergrad at Villanova.  Med school at Jefferson.  That's how my story comes up.

"I'm a big fan of Jefferson," I tell her.  "They saved my life."

It's the shortest version I can think of.  Good thing.  In a matter of seconds, Riley darts off.  There's a puppet show starting outside.

I chase after her.

In the weeks following the accident, I told my story to anyone who’d listen:  the nurses in pre-op, the transport staff who pushed my gurney, the PTs and OTs who got me out of bed.  Again and again, I told how that garbage truck turned into me while I was riding in the bike lane.  Over and over, I gave a play-by-play of exactly what happened on the morning of November 9, 2010.

And while that story hasn't changed, those events have become smaller with each passing mile.  Distance brings perspective.

Festival's over and I'm back in the city again.  I step into a crowded office building elevator.  The doors start to close.

“Hold the elevator!” calls a man from the lobby. 

Quickly, I press the door-open button.  He sticks his arm between the doors just before they come together.  Save!

He steps in, breathless but victorious.  One of his co-workers elbows him playfully.  "If we'd known it was you, we wouldn't have held the door!" he says.  He gives me a wink.  They’re both laughing.

I decide to joke back.  “You know,” I tell them, “when I see someone use their arm like that, I always want to say, ‘Be careful.  That’s how this happened!’”   I point to my Genium.

It's a line I've been waiting to use.  They crack up.

Over time, I've become a seasoned storyteller.  I can summarize what happened in 3 sentences or less.  I have different versions for toddlers and teenagers.  I've grown used to people's questions and reactions.  I even have a ready supply of jokes.

But only recently have I realized how much the story's changed over time – not so much in the facts, but in the TELLING.

Take the Amputee Coalition Conference last month.  There we were, nearly a thousand amputees gathered together.  Clearly, we all had stories to tell.  And we did.  We talked about families and jobs, hobbies and goals, prostheses and prosthetists.

But surprisingly, the beginning of our stories rarely came up.  Instead we focused on NOW –  the stories we create as we move forward.

At Mile Marker 1200, I notice it again.  The first chapter simply sets the stage.  It does not predict the ending.

(Carefully!)

If it did, would I be lifting my 20-pound nephew?

Or traveling to see my brother Andy and his School of Rock All-Stars?

There's something very
funny about this :)

Or even painting this unique pedicure?

Shortly after that elevator ride, I'm feeding dollar bills into a city parking kiosk.  My story emerges again.  Unexpectedly this time.

"You should see this young woman standing in front of me," says a female voice from behind.

I spin around.  She's talking on her cell phone.  About me?

"Her t-shirt says No Guts, No Glory,” the woman says into her phone.

I look down at my shirt.  Yep.

"And she’s sporting this awesome prosthesis!”

(I don't need to look down for that one.)

The parking machine keeps spitting out my money, so I search for a credit card.  The woman bids goodbye to whoever’s on the other end of the line.

Finally, she comes around to face me.  “That was my husband,” she says.  “Our good friend just had a heart attack, and he’s in bad shape.  But when I saw you, I had to tell him -- No Guts, No Glory!  like your t-shirt says.  Just looking at you gives me strength!”

With no words from me, my story has somehow told itself.  It's the shortest version yet.

And I'm honored to share it.