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, May 25, 2014

Time and Again

Mile Marker 1747:

Time and again, I return to Jefferson.

Over 3 1/2 years, the tile floors have been replaced with light wood.  The walls have been repainted butter yellow and robin's egg blue.

Scenic prints of beaches, gardens -- and yes, even bicycles! -- line the walls.

I'm a regular now, not as a patient, but as a trained volunteer.  I trek the hallways each week loaded down with plants and garden supplies.  I'm even friends with Barry, the security guard in the lobby!

He just celebrated his 18th year
with a donor heart!!

I see the hospital from a new perspective.  The rooms and doorways that once loomed so large are now just... rooms and doors.   I glimpse behind-the-scenes shift changes.  I get the cafeteria discount.  I empathize with patients and family members through new eyes.  Been there, done that,  I think, time and time again.

At Mile 1747, Deb and I move through the hallways together.  She's not my nurse today.  We're two friends on a mission.   In 4 hours, we log 3 miles photographing staff who touch the lives of trauma patients.  We're making a video to be shown at the Excellence in Trauma Awards in early June.

This is the third year my family and I are invited.

"Aren't they tired of us yet?" I ask Deb.  (I worry about outstaying our welcome!)

Deb laughs and rolls her eyes.   She knows how excited I get from the invite.  The idea of coming back as a "survivor" reminds me how much I've moved on.

On this day, Deb and I travel from floor to floor, camera ready.  We stop at Patient Services, Pastoral Care, Critical Care, the Neuro ICU, Orthopedics, and Rehab.  In each location, the good-natured staff gathers together for quick photos.  In their scrubs and white coats, many look familiar.  Some remember me or know my story.

But there are also surprises.  When we step off the elevator onto the 9th floor, I meet someone new.

"Do you have a blog?"  I hear from behind.

Great to meet you Dianne!!
I turn around and meet Dianne.  She tells me she works in Orthotics at Jefferson.  We've never met in person (till now!) but she's been reading this blog for almost 2 years!  We grab a quick photo before she heads to the casting room.

How refreshing to be recognized as a writer rather than a patient!   Yep, times sure have changed...

Mile Marker 1748:  

But despite the months and miles, Jefferson's healing power never ceases to amaze me.

Sure, I've moved on.   But in a sense, time STANDS STILL here.

Patients fill the beds.  Gurneys line the halls.  Nurses dart in and out of rooms, as prompt and attentive and busy as ever.  Under this roof, it could be November or May.  2010 or 2014.

Deb and I arrive at 7 Center, my old unit and Deb's current one.  We rally the nurses for a photo.  I see lots of familiar faces.  Then I glance down the hall.  My old room, 7206, has undergone a full makeover:  new door, new floors... and of course, new patient!

A man shuffles by dragging an IV pole.  His back is hunched.   An NG tube dangles from his nose.  On his feet are yellow "fall risk" socks.

"How're you doing?" one of the nurses asks him.

"Ok," he says quietly.

I whisper into Deb's ear a secret I learned first-hand,  "Ok is as good as it gets with an NG tube!"


When we turn the corner onto 7 Northwest, we run into Brendon.

All he has to do is smile, and the memories come tumbling back.  He was my nurse one early morning after a sleepless, painful post-surgery night.  As the sun rose outside my window, Brendon's presence flooded me with relief.  (His charming brogue didn't hurt either!)  He rescued me from my sweaty bed sheets, cleaned up my messy IV port, and assured me things would get better.  They did.

Today he's got lots of other patients waiting for him.   So we exchange a long overdue hug, and he dives right back into work!

Mile Marker 1749:

It's late afternoon by the time Deb and I make our way to the Emergency Department.

Our energy's flagging.  The trauma bay will be our last stop.

It's bright and high-tech.  The stuff of dreams...  In the center of each area sits a gurney wrapped in white sheets.  Two alien-looking lights hover overhead.  Machines and monitors perch at the ready.   The walls are lined with metal cabinets, each one carefully labeled.

A lifesaving lab.

This room, more than anywhere else, sends me hurtling back through time.

Nurse Aileen steps out from behind the desk.  With her friendly smile and dark ponytail, she's maybe 2 inches taller than I am.  But in a second, we realize we have something else in common.  Aileen was here the morning I was brought in by ambulance!

She shows me the actual bay I was in -- 32T -- and tells me what she remembers.  My horribly mangled leg.  Dr. M's determination to control my pain.  How my mom came in to see me, and how worried I was about her.

Then Aileen calls Margaret, who remembers me too.   At 7 a.m. on November 9, Aileen had just begun her shift.   Margaret was finishing her last month as a trauma nurse before becoming a nurse practitioner.  What are the chances I would end up in both their capable hands?

There are no words to express how FORTUNATE I am!

The two of them took care of me on this very bed, in this very room.  In the last 3 1/2 years, they've cared for thousands of patients.  Yet they still remember.

On this blog, I often talk about how things change.  (Just type the word "change" into the search box, and you'll see what I mean.)   As humans, we like to move forward at a steady pace.  It instills us with comfort and hope.  Don't we all want to leave the troublesome stuff behind?

But science says that time doesn't work that way.  Like so many other things, time is relative.  It's based on our own speed moving through space.   I'm no expert in quantum physics, but as I near Mile 1750, I kinda get it.

When I push out through the revolving doors of the lobby, I can feel my own speed.  Although my leg aches from this long day, I keep walking.  I leave the hospital behind.

On the sidewalk outside, there are a thousand reminders....



Blue Jefferson signs.  Wheelchairs.  Flags proclaiming the hospital's new slogan, Health Is All We Do.

Maybe so, I think.  But here's the thing, Jefferson.  You do it AGAIN and AGAIN.

While time moves forward, you remain like a rock between Chestnut and Walnut Streets.  You stock your floors with the best staff anyone could ask for.   When an ambulance can't reach you, you send out a helicopter.  You light your hallways day and night.  Hour to hour, your trauma team waits.  So when we need you, you're there.

Some things are better left unchanged.

Today, 3 miles passed for me.  And before that, 3 1/2 years.  But YOUR work goes on and on.

Thank you Jefferson.  Time and time again.

Saturday, May 10, 2014

A Walk in the Park

Mile Marker 1700:

In May 2011-- long before I began counting miles -- there was a walk in the park.

Six months earlier, Prosthetist Tim had dropped by to visit me in the hospital.  Two months after that, he casted me for a prosthetic socket.  And a few weeks later, I took my first steps between the parallel bars of his office.

On this particular day in May, the path ahead looked pretty sunny.  Prosthetic Innovations was sponsoring a 2-mile Walk for the Wounded, for Operation First Response which helps wounded warriors.  As a new member to the PI family, I was eager to participate and even more eager to WALK.

"Do you think I could walk 2 miles?"  I asked Tim during one of my frequent visits to his office.

"If you want to try it," he told me, "I'll walk with you the whole way."

That was all I needed to hear.  The challenge was on!

The morning of the walk dawned hot and humid.  By the time Mom and I arrived at 10 a.m., the temperature had already reached 80.  We made our way from the gravel parking lot to a large stage where men and women in uniform had gathered.  The grassy field was filled with motorcycles, helicopters, and flags.  An award ceremony for veterans began.

As the minutes passed, I became less and less sure of myself.   There was no shade and nowhere to sit down.  Under a nearby tree, I waited with my mom and some PI staff.  The tree roots made me unsteady.  I planted my cane in the dirt for balance.

Panic crept in.  I was too hot and sweaty.  My socket felt like it was on wrong.  I limped over to a port-o-potty on the other side of the field.  In that tiny box, I peeled off my socket and liner.  I held my nose and tried not to lean against the wall.  But a little voice inside my head urged me on:   If you can fix your leg in here, you can do it anywhere!   The more rational part of me disagreed:  Are you out of your mind?!

The walk finally began.

"Grass?!  We're walking on GRASS??"
In my short time as an amputee, I'd never taken more than a few steps on grass.  Nobody told me this walk would be a rambling stroll in a wildly cut field!

But the PI team rallied around me.  Tim's dad walked in front of me, Bonnie from the office walked behind me, and Tyl trailed us with her camera.

As promised, Tim paced next to me, reciting his ever-present mantra...
"Big step with the right, small step with the left!"

Meanwhile, Mom remained steadfast at my heels, reminding me it was ok to give up whenever I needed.  "Don't be a hero!" she warned, her voice full of worry.

Together we continued onward.  Everyone watched my feet, including me.

The sun blazed down.  Somewhere along the way, Tim took my cane.  Someone handed me a bottle of water.  I kept putting one foot in front of the other.  Uphill.  Downhill.  Over grass and rocks and holes in the ground.  My socket stayed attached, and I stayed on my feet.  I don't know how we did it, but somehow we reached the finish line!


It was a day of VICTORY!

So why am I telling this story now?

Fast forward 3 years.  (In amputee time, that's 5 sockets, 3 suspension systems, 3 knees, 2 feet, and 1 revision surgery.)  Since that first walk, I've traveled well over 1000 miles.  I've learned about silicone and skin irritations.  I've fashioned socket pads from shoe soles and Saran wrap.  I've become a ninja with an Allen wrench.

This year, PI is celebrating its 8th anniversary at Walk for the Wounded.  As the days approach, I can't wait!  Walking is second nature now.  I cruise easily over grass and stone and ruts in the ground.  I can endure 2 miles.  I'm the master of my Genium.

On this sunny May morning, I show up at the park with my brother and parents.  The temperature is an ideal 65 degrees.
Trying to get into the spirit...

But at Mile Marker 1700, things go south.  If you're an amputee, you understand all too well that comfort is fleeting.  That technology sometimes fails.  That a good walking day does not always come when you call it.

At 10 a.m., I'm already frustrated by a long morning of socket issues.   Despite padding with sock-ply and silicone, the interior brim pokes my leg like the tip of a paring knife.  And if that weren't enough, I am walking on a "loaner leg."  My Genium has been sent back for repairs.  Again.  This month alone, it has logged more air miles than I have.

These are normal ups and downs in the life of a prosthetic user.  Bumps in the road.  Small blips on the walking radar.  I try to remember I'm lucky to be walking at all.

But on days like today, those glitches add up.  When expectations are high, there's farther to fall.

I wanted this to be a great walk.  A victory, like it was 3 years ago.  Instead, I sit it out completely.

It feels like I'm moving backwards.

I've now been an amputee for more than 3 years.  Yet the more miles I cover, the more questions I uncover.  Will I ever be able to count on my leg?  Will I get to a point where walking doesn't depend on the whim of the moment?  Will the next step always elude me?

As I think about where I came from and where I'm headed, there's one thing I know about this journey...

It is not a walk in the park.


To see a video of my first (and victorious) Walk for the Wounded, click here.

Thanks to Tyl for the video and all the photos!

Sunday, May 4, 2014

The Gimpy Chicks

Mile Marker 1670:

We're not famous yet, but we draw attention wherever we go.

The setting: Orlando, Florida.  At Jimmy John's sandwich shop, heads turn as we enter.  We're three attractive women with long hair from blonde to brunette.  In workout clothes and brightly colored sneakers, we're laughing and chattering.  So why do people stare?

Today, between us, we've got three legs, two pairs of crutches, and one prosthesis!

The clerk takes our orders, her eyes glancing from our bodies to the cash register.  We smile warmly in return.  Make our way toward the pick-up counter.  When our sandwiches are ready, I take the bag.  Then I open the door for Ali and Chris.

By default, I'm the helper today -- the only one with 2 working legs!

When a chance meeting brings us together in Florida, Ali, Chris, and I become instantly inseparable.  Ali is a "left AK" (left leg, above-the-knee) like me.  Having lost her leg at 16, she is the most experienced amputee among us.  Chris is a "right BK" (right leg, below-the-knee).  She's the newbie; her amputation was just last January.  With my three years as an amputee, I fall somewhere in the middle.

During our week together, we dine on Jimmy John's, Starbucks, and Thai food.   We meet each other's families.  We walk with various leg arrangements.

At first, we exchange tips about socket fit.  Ali has just had revision surgery.  Chris has a neuroma she's trying to relieve.  I am just plain tired of being uncomfortable.  Later our conversation moves to hobbies and fitness, work and relationships, shoes and clothes.  Ali is a nurse; Chris is a rock climber.  Both are moms.  I take lessons from each of them.

I admire how they put their kids first despite ongoing leg issues.  Chris, who has traveled to Florida from chilly Wisconsin, makes sure her kids get time at the pool.  Ali, who's from Tennessee, tells me that during a tornado, she once had to crawl down the stairs carrying both of her toddler daughters!

One afternoon as we're standing around, Ali's one-year-old daughter Bella pulls herself up on my Genium.  Then her tiny face stares up at me with shock.  I am not her mother!

We all crack up.

"Bella thinks I'm the only one with a leg like that!"  Ali says, coming over to fetch her baby.

Toward mid-week, Chris, Ali, and I come up with an idea for a reality show.  It will be Push Girls meets The Bionic Woman.  Chris' husband Scott suggests the title Gimp Girls, but we prefer Gimpy Chicks!

There might be a few guest stars :)
We're sure it'll be a hit because of its wide appeal:  amputees, cancer survivors, trauma patients, nurses, rock climbers, teachers, physical therapists, tech buffs, parents, and women in general.  By raising awareness through the media, we might even drive new legislation and insurance coverage for amputees!

We agree on a smart subtitle:
Imperfection is the new perfection.

Now all we need is an agent!

At the end of our stay, I say goodbye to my fellow Gimpy Chicks.  We promise to stay in touch.  I leave Florida feeling empowered by my new identity.  I am no longer simply Rebecca, a lone amputee from Philly....

I am a Gimpy Chick!

In the Orlando airport, the TSA agent flags my backpack.  I'm not surprised.  Inside, I'm carrying Allen wrenches, silicone sleeves and patches, moleskin, alcohol spray, tape, and ointment in various quantities.

"Whose bag is this?" he says, holding it up.  I raise my hand.  Confidently.

He takes me over to the counter and pulls out my metal vacuum pump.  With its red plastic handles, round numbered dial, and clear tubing, I guess it does look kind of dangerous.  "What's this for?" he asks.

"It's a pump to get the air out of my leg," I answer, gesturing proudly toward my prosthesis.

"Never heard that one before!" he says.  He places it back in the bag and hands me my belongings.

Good thing.  By the time we reach the gate area, my socket is acting up again.  I'm so uncomfortable that I dismantle my entire leg.  I use an Allen wrench to unscrew the Genium from the base of my socket.  Then I remove the socket from my leg and peel off the silicone liner.  Prosthetic parts litter the floor around my feet.

My mom looks on nervously.  Before this trip, I never would have attempted such a feat.  I reattach my Genium to a different socket and put the whole thing back on my leg.  Lickety split.  My mom breathes a sigh of relief.

I head off in the direction of Starbucks, texting Chris and Ali as I go.  They will understand.

Gimpy Chick Power!  If only the cameras were rolling!