Tuesday, November 9, 2010 arrived with a clear early morning that promised to become a chilly, sunny, and typically autumn day. I zipped my coat, buckled my helmet strap, unlocked my bike, and headed off to work. A few minutes later, a garbage truck crossed a bike lane to make a right turn. I was in that bike lane. The tires of the truck crushed my left leg and caused other internal injuries. An amazing team of trauma surgeons saved my life, but they had to amputate my leg to do so.

The journey of a thousand miles begins with one step. Confucius.

In July 2011, I set off to walk a thousand miles as an above-knee amputee in my new prosthesis. The journey has held more twists, turns, and detours than I ever imagined.

I reached Mile 1000 on March 30, 2013.

But of course, that wasn't the end.

I'll keep walking!

Monday, August 25, 2014

Mystery of the Sticky Knee

Mile Marker 1994:

Ever get a rock in your shoe?

A little pebble from the sidewalk, or sand from the beach, or wood chips when you're hiking?  You know the feeling.  The annoying poke each time you put your heel down?  How the tiniest stone feels like a boulder in there?   How, after just seconds of suffering, you stop to dump out your shoe and see what's inside?

Well, Mile 1994 sets a new standard for that.

The mystery begins in the morning on the treadmill at the rehab gym.

My Genium feels sluggish.  Lazy.  Like it's stuck to the ground with a wad of gum.

PT Deb passes by with one of her patients.  I wave as usual.  "Out for a stroll?" I call.  The patient smiles and waves back with her cane-free hand.

I keep walking.  Awkwardly.   It's just a slow start.  Walk it out,  I tell myself.  And I do.

But when Deb goes by on her second lap, I know something's up.  Each time my Genium bends, I have to flick my entire hip forward.  I roll my eyes at Deb.

"What's wrong?" she asks.

"We're having a sticky knee day," I tell her, motioning toward my left half.

But the human body is amazingly adjustable.  I shift my weight differently.  I take smaller steps.  Finally, I find a rhythm.  Despite the hassle, my Genium and I squeeze out 1.5 miles in 30 minutes.  Not bad for sticky knee day.

The rest of the day goes down uneventfully.  When I get home, I walk precariously through the parking garage to the elevator of my building.  Safely in my apartment, I examine each joint of my Genium, foot, and socket.  I check all the screws.  I run my finger over the line of black Sharpie that marks the angle of the knee.  I even strip off the whole system right down to the liner.

What's wrong with my alignment?  How did it get so messed up?  Should I call Prosthetist Tim?  What if he has to send my Genium back to Ottobock again?  What if we have to re-program a loaner?

I catastrophize.  Then I re-don everything and move on.

That night, friends Meg and Chad stop by for dinner.  We walk 3 blocks over the cobblestones and bricks of Old City to eat at Revolution House.  My gait is completely off.  Each step is unsteady.  It feels like I'm walking on tiptoe.  My knee releases too quickly, as if I'm in high heels.  From moment to moment, I check on my Genium like a sick child.  What's wrong girl??

After dinner, we head over to Franklin Fountain for the best ice cream in the city.   Although walking is tough, I push onward.  (Shades of Mile 380 -- Will Walk for Ice Cream!)

Yum!  It's worth the trouble!

When I plug my Genium into its charger that night, I promise it (and myself) that tomorrow be a better day.

It's a truth you learn early on as an amputee:  there are "good leg days" and "bad leg days" -- often without explanation.   And the brighter side of that truth:  sometimes things just fix themselves.

The next morning, I change into sandals.  When I tug the left sneaker off my Genium, I discover it.  The cause of all the fuss.  Not a rock.  But a SOCK.  A crumpled up white gym sock with a Nike swoosh on the ankle, rolled in a ball and tucked into the heel of my gym shoe.  Small and soft, but bulky enough to drive my Genium crazy!

In a flash, I remember 2 days ago at the gym, when I took off my socks and stuffed them inside my sneakers.  Guess I didn't pull both of them out!

Mystery of the Sticky Knee solved!

I text Deb to tell her.
"Good work Sherlock!" she texts back.

In almost 2,000 miles, you could say I've gotten better at detecting what's underfoot.  If I step on a stick, I can tell by the way my foot wobbles  If the sidewalk is jagged, I can feel the push-back in my socket.  Yet many sensations are still out of reach.

Those are the mysteries that keep me on my toes!

Wednesday, August 20, 2014

I'm Back!

Mile Marker 1970:

How appropriate that as I reach Mile 1970, my parents are turning 70!

For 3 weeks, I've been rushing around by car, on foot, and in the kitchen.  There are quiches to be baked, napkins to be bought, and sandwiches to be ordered.  Each morning, my inbox is filled with RSVPs as everyone converges on Philly for the big surprise party.

Aunt Patti generously agrees to host the party in her backyard.  She and I schedule secret meetings.  We pray for good weather.  And get it!  On the day of the party, it's 85 and sunny.  The garden is dotted with lawn chairs and lanterns.  Rainbows of flowers fill a dozen mason jars.

Everyone chips in.  Uncle Steve and cousins Kevin and Jeff set up the yard.  Mark and Andy bring beverages.  Joe carts in toys for the kids.  Stephen's on clean-up duty.  And Sam has the job of getting Mom and Dad to show up.  (The toughest task of all!)

At T-minus 1 hour, I race through the supermarket with a cart full of balloons.  Breathless, I reach the bakery where our pre-ordered cakes sit waiting.

Back at the house, I carry out plates and boxes and bags.  I walk gingerly across grass and stepping stones.

But primarily, I direct and delegate like the conductor of an orchestra.  One that's been playing together for a very long time!


To understand this story, you need to know that I'm the OLDEST.  The oldest child.  The oldest sibling.  The oldest cousin.  The oldest grandchild.  I have always been the oldest in the family.

Circa 1986
When I was a kid, my mom called me "The Ringleader."  (She did it mostly when I was in trouble!)  

But it was true.  I was the organizer.  My siblings and cousins always looked to me for answers.  What are we doing for Mom's birthday?  What's the dress code for dinner?  Did you get Dad anything for Father's Day?   Of course this was followed by, Can I go in on it?

So on November 9, 2010 -- the day of my accident -- a curious thing happened.  I stopped being in charge.
 
My siblings and cousins called each other from across the country:
"What do we do?"
"Should we come to the hospital?"
"Should we drive or fly?"
"Have you heard anything?"

Everybody called everybody.  And, according to legend, at least one person remarked, "I don't know!  Rebecca always tells us what to do!"  (I mean I can't say for sure, but that's the way the way the story goes.)

As you probably guessed, they all figured it out.


Mark skipped work and came straight to the hospital.  Sam got in the car and began the 8-hour drive from Vermont.  Andy flew in from Chicago.  Joe and Stephen trucked in from the suburbs.  Cousins Betsy and Tracy traveled from Baltimore and Kentucky.  They all came running.

Even Riley Cate did her part!
As the days passed, Mark became my "big" brother.  Sam fielded my phone calls.  Andy helped move me to Magee.  Tracy accompanied me to the ER too many times to count.

Discharge day from Jefferson



Everyone called, everyone visited, and everyone kept my spirits high.

THEY took care of ME!





At Mile 1970, it's nice to be needed again.

Mark asks me how much beer to buy.  (I overestimate by a mile.)  Andy asks if we're getting a gift.  (I tell him to investigate our options.)  Tracy bunks in, as usual, at my place.  (She even has her own bedroom.)

But as the afternoon wears on, we're all getting antsy.  My parents were supposed to arrive a half-hour ago, but according to Sam's desperate text messages, they haven't yet left the house.  Lateness runs in our family, but we need the guests of honor!

At a loss, I call Mom's cell phone and leave a whiny voice mail.  "I'm at Aunt Patti's house.  When are you coming??  I'm waiting for you, but I can't stay much longer!!"  Over the past 3 years, she's received a string of messages like this one.  She knows my staying power is not what it used to be.  Today, of course, it's a hoax.

Finally they arrive, and we shout SURPRISE!  The day blossoms into the party we planned!

HAPPY BIRTHDAY!!!

We eat.  We sing.  We celebrate.  Kids swing in the hammock.  Friends chat with friends they haven't seen in years.
Lots o' neighbors!

Uncle Andy holds court :)


The 2 Patti's kick back!



Uncle Steve's first selfie!

It's so great to be together that even "The Ringleader" starts to relax!  My siblings and I gather together for a photo.  Just for fun, we line up in age order.  I take my place at the head of the line.  I'm smallest in height.  But with this group beside me, I'm tallest in pride!

Some things never change!

When the party's over and clean-up is done, Tracy and I arrive back at my apartment.  Every bone and muscle in my body drags with exhaustion.  It's been 16 hours in my prosthesis, almost all of them standing.  Tracy heads out to pick up sushi, and I go into the bedroom to take off a very tired Genium.

It's been a long day, a long 1,970 miles, and an even longer 3 1/2 years.  But as I release my socket and remove the sweaty liner, I'm still celebrating inside.

Happy 70th Mom and Dad!

I'M BACK.

Tuesday, August 5, 2014

A Thousand Words

Mile Marker 1920:

A picture is worth a thousand words.

I've always had the desire to capture a moment in time.

Don't leave home without it!

For my 8th birthday, I got a Technicolor instamatic camera with a flashbulb on top.  Later I progressed to a Polaroid.  And finally at the end of 8th grade, I saved up enough babysitting money to buy a real 35mm camera, a Nikon FG.

Like everybody else, I've now gone digital.  Yet I still carry my camera everywhere.  A tiny Cyber-shot, so small it fits in my pocket.  If it's on my prosthetic side, I don't even feel it!

But today, at Mile Marker 1920,  I'm on the other side of the lens.

(Last year's issue!)
This fall, my story is going to be featured in the "Be Well Philly" issue of Philadelphia Magazine.  Yes, the whole city is going to read about my last 3 1/2 years!

The article is about overcoming health challenges and adapting to life as an amputee.  About the journey of a thousand miles and beyond.

A few weeks ago, reporter Gina Tomaine interviewed me.  The tale flowed easily -- in WORDS.

But now there's a PHOTO SHOOT.

A thousand questions run through my mind....

How does one dress to be in a magazine?
Who am I after nearly 2,000 miles?
What does OVERCOMING look like??

They stack up high like my pile of old t-shirts, none of which is presentable enough for modeling!

After much deliberation, I choose a pink tank-top, denim shorts, and black sandals.  I simply decide to be MYSELF.


Photographer Adam Jones has the job of telling my story in photos.  Or photo.  Of all the pictures he takes, the magazine might choose just one.

We meet on Penns Landing.  The plan is to catch the sunset, but there's a storm on the way.  It's so windy Adam uses sandbags to weigh down his light set.

I climb up on the stone wall above the choppy Delaware River.  Behind me, the sky is steely gray.  My hair whips everywhere.

I stand tall, hands on hips, while he snaps photos from the ground below.  His flash lights my face like the sun.  It feels awkward at first.  Walkers watch us as they pass by.  They smile and wave.  So I start waving back.  And when Adam lets me peek at the photos, I see what the image portrays:  CONFIDENCE.

Next, he has me walk along the top of the wall, one foot in front of the other.   The wind gusts, but my Genium and I hold steady.  (I tell Adam about PT Deb and all our balance beam practice!)   Then he shows me his camera, and I see what we were after.  My Genium's blurred; my hair flies out behind me.  Pure motion.  MOVING FORWARD.

Finally, he has me raise my fists high above my head.  (Rocky style!)  We repeat this pose over and over again.  My arms shoot up and down, each time with more force.  I get into it.  I feel the victory!  And when I see the shots, I understand why.  This is what OVERCOMING looks like.


We move to Boathouse Row.  Once again, Adam sets up his equipment and snaps photo after photo, working toward one that will tell the whole story.


Between shots, I see myself through his lens.  High above the Schuylkill, as tall as the Philly skyline.

It's then that I realize my clothes didn't really matter.  The photos capture not only what's outside, but what's inside too.   A thousand miles and beyond.

The whole process -- settings and poses, camera and lights --  makes me feel like a STAR.

That's me in there!

I wish my friends along this journey could join me here.  Everyone who's dealt with injury or illness.  Anyone who looks in the mirror and sees disability.  I wish they too could be in front of Adam's camera.  To feel this boost.  To have their doubts fall away.  And to believe in themselves like I do right now.

He gets his photo.

The one that's worth a thousand words.

(Of course the magazine won't be out for a while.  Cliffhanger, I know!)

Back in the parking lot, my little Cyber-shot is still in my pocket.  And it's itching for a turn.  So I ask this real photographer for.... What else?

A SELFIE!

Adam takes my little camera, extends his arm, and presses the shutter.


What'd you expect?  He's a professional!

Maybe this isn't our "thousand words" shot.
But it definitely captures the moment!


Stay tuned for the Be Well Philly issue.  
Coming soon to a newsstand near you!

In the meantime, check out Adam's website!

Monday, July 28, 2014

Walk It Out 2014

Mile Marker 1900:

Treadmills hum with patients, former patients, therapists, family, and friends.  We hop on and off.   Harness and unharness.  Cheer and cheer!

It's a 24-hour Step-A-Thon to benefit Magee's Locomotor Training (LT) Program and the Reeve NeuroRecovery Network.

Magee's slogan is BELIEVE.  And today, it's impossible not to!


I take to the treadmill at 9:30 a.m, keeping a steady pace of 3.2 m.p.h.  Mom and Dad watch from the sidelines.


Ernie is my "buddy" on the LT machine.


And Mark takes over when I need a break.



This year is different from last year's Walk It Out.  In fact, I don't even blink when my socket comes loose after 25 minutes!  (That's right... I just expect it by now!)

This year, I'm thrilled to be walking, but I'm even more excited to watch my friends!

As I take a seat to pull off my sweaty prosthesis, my friend Matt straps on his harness and hoists himself onto the LT machine.  Three PTs surround him:  one at his hips and two at his legs.  A fourth PT uses a computer to adjust the weight on his harness.  The treadmill rolls.

MATT WALKS!!!


We've been pals for a while, but I've never seen him WALK before!

Usually in the wellness center, Matt rides the stim bike while I walk or row next to him.   But this is AMAZING!


Last year, Walk It Out coincidentally marked my 1000th Mile.  This year -- though I can hardly believe it -- it paves the home stretch toward Mile 2000.

After all this time, the phrase "Walk It Out" still keeps me going.   Some days, it simply gets me out of bed.  Other days, it takes me farther than I ever thought possible.

And speaking of farther, friends Robert and Binal traveled to Philly just for this event!  Last winter, they moved to New York for a study to improve Robert's muscle control and gait.  As he climbs onto the treadmill today, I'm bouncing with anticipation!

Last year, Robert walked supported by the LT harness.  Today, he will walk on a standard treadmill, 100% on his own.  If anyone can make this LEAP, Robert can!

BELIEVE IT!

I can barely capture the story of all that happens in this small workout room at Magee Rehabilitation Hospital.

Go Susan!
As the fundraiser rolls on, more of my friends continue to defy odds.

It looks like magic, but we all know the sweat, pain, and tears that have poured into our journeys.

Today, of course, there are only smiles.  We're celebrating.  WALKING TO VICTORY!

Go Charmaine and Jeff!

So after 24 hours (and 1,900 miles) what's left to do?

Just BELIEVE...
We do!

Check out the video!
https://my1000miles.shutterfly.com/pictures/80

Thanks to Charmaine, Binal, Robert, and Magee for the extra photos.  Thanks to Dad for the videos.  And thanks to everyone for the INSPIRATION and SUPPORT!  

BELIEVE!

Sunday, July 20, 2014

Screwed!


Mile Marker 1890:

I'm knee deep in pedestrian traffic on Walnut Street.  It's not my favorite place to be.  The sidewalks are cut with alleyways.  Restaurant doors open erratically.  Shoppers and strollers hurry past me.  Cars make turns.  Trucks idle.

At rush hour, I'm carried along by the congested current of walkers around me.

With relief, I turn onto quieter 16th Street.  That's when I hear it.  A clicking sound.  A rhythmic knock with each step.  I stop.  The sound stops.  I glance down at the pin that holds my socket together.  The likely suspect.  But it's firmly in place.

I walk again.  The sound follows with every step, like the rattle of a stone in a car tire.

Suddenly I feel my knee wobble beneath me.  I halt in the middle of the pavement, oblivious to the stream of walkers going around me.  I grasp the kneecap of my Genium.  It wiggles like a loose tooth.

This is no harmless tire rattle.  My wheel is coming off.

I inch my way toward the wall of a Kinko's store.  Against the concrete, I start checking screws from bottom to top.  The foot and ankle are fine.  I check the rotator, the screws I use to put on my swim leg.  (I always fear I won't tighten them enough.)  But no, they're tight.

One set higher, I find the culprits.  The 4 screws that connect the knee to a pylon under the socket.  The first screw practically falls into my hand.  The next 2 are working their way out.  And I can't even reach the last one.  It's behind my leg.

I am SCREWED.

Or more accurately, UNSCREWED.

I've never seen anything like this.  My Genium hangs oddly at an angle, half-in, half-out of its base.  One more step and it will completely fall off.  Drop to the ground and take me with it.  Do I have an Allen wrench with me?  If not, what can I do?  Hop to hail a cab?  Crawl inside Kinko's?

Leaning to the right, I unzip my backpack and search frantically through the leg supplies.  Thankfully, an Allen wrench lies at the bottom!

I bend over and tighten the 3 screws.

Then I continue walking gingerly toward the car.  Safely at home, I do a full check of all my leg's components.


The next day at the rehab gym, I ask Paul if he has any Loctite.  From his tool bench, he pulls out an unmarked bottle with a dark, gluey substance inside.  He tells me it'll work.  (I don't call him MacGyver for nothing!)

In minutes, my leg is officially screwed once again.  As it should be!


Mile Marker 1892:

In the life of an amputee, there are a thousand moments like that one.  Admittedly, coming unscrewed is scarier than most!  But over the years, I've become accustomed to bumps in the road.

Sweaty on the treadmill?  Grab a towel and take the whole socket off.

Bottoming out?  Add another sock ply.

Foot whipping around?  Rotate the socket.

There are tons of tricks, some easier to implement than others.  But the hardest thing to realize is that just one millimeter or one loose screw -- even a tiny puff of air -- can throw a wrench into the day.  And I don't mean an Allen wrench!

At Mile Marker 1892, screws freshly locked, my Genium and I browse through Whole Foods.

On the highest shelf of the freezer sits a Butternut Squash Souffle.  I must have it.

Now, I've been an amputee for less than 4 years, but I have been SHORT my entire life.  In fact, I come from a long line of small, powerful women. What we lack in height, we make up for in determination.  And bonus, I'm a rock climber too!

I've got a plan in mind.  I grab a box of veggieburgers from the bottom shelf, set my right foot on the ledge of the door frame, and hoist my body upward.  In a jiff, my right hand grasps that top shelf.  With my left, I use the veggieburgers to swat down the souffle.  It hits the floor.

Unfortunately -- psst!   I feel my leg going too!

The freezer launch has leaked a tiny bit of air into my liner.  It makes the suspension go haywire.  My prosthesis is no longer fixed to my leg.

I refuse to be screwed 2 days in a row.

So I pick up the souffle box and push my cart toward the restroom, luckily just yards away.  But it's occupied.  To wait, I limp over to the recipe wall.  I feign interest in pecan-crusted salmon while I balance on one foot.

Finally, the bathroom door opens.  Grasping my socket with one hand, I shuffle inside.  There, I perform the best trick so far.  I re-don my entire liner and socket without touching any bathroom surface!

That's it,  I decide.  I am done.  No more acrobatics.  No more strategies.  No more pushing my luck.  I head straight to the check-out line.

On this blog, I talk mostly about big things, like comfort and health, inspiration and motivation, even getting my life back....  But prosthetically speaking, the devil's in the details.  Consistency is everything.  And inconsistency will take you down in one step.

I don't know how other amputees get through these challenging moments each day.  I only know how I do.

"This'll make a great blog post," I say a thousand times.

Screwed (or unscrewed) that's usually enough to keep me going.