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.

Friday, March 28, 2014

The Tooth About Trauma

(or How A Windy Night Landed Me In The Dentist's Office)

Mile Marker 1620:

The wind howls like a thousand ambulance sirens.  I lie in bed, shoulders tense, jaw tightened.  I toss and turn until the sheets are tangled.  At some point, I fall back to sleep.  That's when the sirens become ghosts.

In March 2011, the night after my 13th surgery, I had a terrible dream.  In it, I stood in the middle of a blizzard on a huge snowy hill.  Hundreds of sledding ghosts whipped by me from every direction.  The wind gusted as they whizzed down the hill.  Their screams screeched in my ears.  I knew I’d be hit, but I was immobile.  With my single leg trapped deep in the snow, there was nothing I could do to get out of their way.

I woke up in the ICU drenched with sweat.  Just 4 months earlier, I'd had my leg amputated, and now I'd just undergone major abdominal surgery.   My little leg quivered in the sheets.  My stomach rippled with metal sutures and adhesive tape.   My head ached with morphine.  And the suction sound of the NG tube -- that incessant high-pitched whistle -- followed me like a constant screaming ghost.  The dream made perfect sense.  I was utterly powerless.  There was no escaping the chaos.

At Mile Marker 1620, the cause is different, but the effect is the same.

A few weeks ago when I spoke to the staff at Hershey Medical Center, I told them that over time it’s possible to organize traumatic memories.   To tuck them neatly away.  To take them out when I want them, not when they want me.

Of course, that's not entirely true.  Sometimes the ghosts sneak out.

After 3 years, I've still got memories of the toughest days.  The theme music from Glee takes me back to sleepless nights in my hospital room.  The smell of Purpose soap reminds me of when my mom would help me get washed up each morning.  Even some physical sensations -- Ankle Blades and the Stone Sandal -- work like instant time travel.  They make me remember.

But they aren't threatening.  They don't recreate the FEAR.

This night does.  The wind shrieks.  I toss and turn, and clench my jaw some more.  At 3 a.m. I get out of bed.  Grab an empty bag.  Stuff my pillow, fleece blanket, iPad, phone, and water bottle into it.  I do these things in pajamas, barefoot, balancing on my right leg.  Then I shove the bag onto my shoulder and crutch into the spare bedroom.  It's smaller and quieter in there, somehow safer because it has no windows.

Exhausted and stressed, I scrunch my body onto the unopened futon.  One foot hangs off the end.  

I listen to Radiolab.  Grit my teeth.  Eventually, I sleep.

In the morning, a few things are obvious:
(1)  The ghosts have gone back where they came from.
(2)  I should have called my 4th floor friends and bunked in with them.
(3)  I probably broke a tooth.

By Mile 1622, I'm in the dentist’s chair.  Luckily the dentist happens to be my good friend Jeff.  He looks in my mouth, wiggles my teeth, and takes an x-ray.  Although my jaw still aches, he declares no major damage.  He tells me I’ve got a minor case of TOOTH TRAUMA.

“Trauma?" I say.  "I’m familiar with that!”   The diagnosis is oddly comforting.


When I tell him the story of the windy night, we end up laughing about the tiny futon.  I tell him I never could have fit on it with 2 legs!

I've built a safe home for my traumatic memories.  It's taken time and practice (and help from a skillful therapist).  But the truth about trauma is this:  when the lights go down, it sometimes leaks out.

More than three years later, there are still a few ghosts.

When they visit, I have to hunker down and bite the bullet -- although it might land me at the dentist.

When I leave Jeff's office, I'm smiling again.  The sun is high.  My mind is clear.  And, best yet, there's no wind at all.

Sunday, March 16, 2014

The Sweetest Place


Mile Marker 1612:

There's a certain sweetness in telling my story.

For weeks beforehand, I line up the events like ingredients on a shopping list.  From photos, I mix together a PowerPoint.  I decide what to include and what to leave out.  Dice or chop?  Stir or blend?  It's a constantly changing recipe, and only in the tasting, can I tell if I got it right.

The key ingredient... chocolate?
I'm excited to be here in the Sweetest Place on Earth.   But more than that, I feel fortunate to be in a place, physically and emotionally, where I'm able to share my story with others.


As my parents and I wait in the bright, windowed lobby of Penn State Hershey Medical Center, patients go by in wheelchairs.  Doctors in scrubs drink coffee at a nearby table.  On the other side of the room, a woman on a scooter tries to reign in 2 rowdy toddlers.  My mom says she can feel the anxiety here.  But to me it's just an atrium, spacious and airy.  In the middle of fields and farmland, it's nothing like the city hospitals I know so well.

An hour later, at Mile Marker 1612, I stand in an auditorium filled with doctors, nurses, and hospital staff.  Above me, on a screen the shape of a giant Hershey Bar, is my first slide:  A Thousand Miles:  Trauma from a Patient and Family Perspective.

This is Surgery Grand Rounds.

Kinda rolls off your tongue, doesn't it?

I'm impressed with many things here (including that cool title!).  I'm impressed with the story behind the town, the vision and teamwork that impacted the lives of so many people.  I'm impressed with the hospital, a sprawling and busy Pediatric and Adult Trauma Center.  But what impresses me most are the medical professionals who've taken an hour of their valuable time to come and hear me.

I begin with the basic ingredients:  a bike, a street, and a teacher heading off to work.  Then I add the garbage truck.  The right turn.  The injuries, the rescue, the surgeries, the hospitalizations.  The pain, the fear, the worry, the set-backs.  And all the people -- like everyone in this audience -- who competently and compassionately carried me and my family to where we are today.

I throw in the scary times, but I sprinkle in the sweet stuff too.   Like Australia and A Bump in the Road.  All the human and healing moments.  Three years later, those tiny details are the tastes I like best.

Halfway through the presentation, beepers go off like a barrage of oven timers.  Not one, not two, but a whole auditorium full!   I stop talking, but no one makes a move.  "That sounds like an emergency," I suggest.  "Maybe you guys should go."  A laugh echoes back.  So I pick up where I left off.  But then, 5 minutes later, they all beep again.  "It's ok if you need to leave," I say.  "Really, I've been there!"

I remember the stark white lights of the trauma bay.  The doctors' wide eyes hovering above my gurney.  I have been there.  I've been the patient in need when the beepers go off.

But I guess this time it's not a true emergency after all.

At the end of the program, we open it up to questions.  The first one is from Dr. Peter Dillon, Chair and Professor of Surgery.  "What was the most important aspect of your relationship with your team?" he asks.  "What did you need the most?"

I've been telling my story in one form or another for the last 3 years.  Yet this question takes me somewhere new.  Instinctively, I lean into the microphone and tell him the most important aspect was TRUST.   After 1,612 miles, I discover the secret ingredient that has flavored every interaction with my team.

Other questions and comments come from the audience.  This one gets a laugh:  "Do your parents feel like putting you in a padded room so they can go on vacation?"

Ha ha.  In the last 45 minutes, I've shown photos of biking and skating and rock climbing.  So it's a logical conclusion.  And reasonable too.  Like I said, my mom feels the anxiety in a hospital that's not even mine!

When a trauma occurs, it leaves vast and deep scars.  You lose your health, your independence, your confidence, and even your hope.  It's TRUST that gets you through.

The story starts out bitter.  But if you're very, very lucky (like I was), you find some sweet places along the way.



A heartfelt THANK YOU to the Trauma Team at Hershey Medical Center for the opportunity to share my story.  And for the skill, courage, compassion, and TRUST you share with your patients every day.


Saturday, March 8, 2014

Comfort Zone

What do an ICY SIDEWALK and an ELLIPTICAL TRAINER have in common?

They're both outside my comfort zone!

Mile Marker 1575:  

Mother Nature dumps more snow on Philly.   For the last 2 winters, she’s been kind.   But now, in my 3rd year as an amputee, she declares, “No more kid gloves.  You can handle this!”

I'm not so sure about that.

No,  I want to
STEP OUTSIDE!
In mid-February, school closes for 2 days in a row.  By the third day, I'm restless.  I've made plans, but do I dare venture out?

My friend Kelly, a fellow amputee, posts on Facebook that she has just shoveled her driveway.   Go Kelly!!  That's just the spark I need....

I lace up my boots, start the car, and steer out of the parking garage.  Fortunately, I don't even have a driveway to shovel!

The streets are glazed with slush as I head across the city.  When I find a parking spot along the curb, cars drive by, splashing my door.  Nervously I wait to get out.  I watch the sideview mirror till I can’t see any more headlights.  The time is NOW.

In one swift motion, I unlatch the door and swing out my Genium.  I push up into a standing position, and close the door as quick as I can.  Sliding my glove along the car, I make my way toward the sidewalk.  My heart is pounding.  I hate being this close to traffic.

Uh-oh.  A foot-high snowdrift blocks the curb.  If I sink into it, I'll fall for sure.  (Walking in deep snow is like marching, a skill I haven't yet mastered.)  So I inch along the parked cars until I reach a shoveled-out space at the corner.

I was too panicked to get
a photo of that stretch of ice,
but it looked kinda like this one!
There, I face the next obstacle -- a 20 foot stretch of sidewalk that looks more like an arctic tundra.  I draw in a deep breath and begin shuffling along it like I'm walking on glass.  Land each step as light as a snowflake.  One false move could cause an avalanche.  That avalanche could be ME.

Finally I reach the parking kiosk.  Relief!  But only for a second.  I realize, at that moment, I'll have to cross that sidewalk twice more – once to put the parking ticket in my car and a second time to get where I’m going.

Here's a handy map (courtesy of my friend Shelley):


Ugh.  Magic better happen after this adventure!

This winter, more than ever, the walls of my comfort zone confine me.  I stay indoors when I want to go out.  I drive when I'd rather take Septa.  I circle the city in my car, checking the sidewalks, afraid to walk on them.

Ok, I admit it.  The entire month of February lies outside my comfort zone.

It makes me angry and frustrated.  But at Mile 1575, there's a new force pushing against those walls.  If Kelly can do it, maybe I can too.

And today, if I do stay on my feet, I'm pretty sure it will be worth the trip.  For the first time in 3 years, I’m going to see Ed.  

Ed was a volunteer at the rehab hospital when I was there in December 2010.  Each morning, he greeted me with a warm smile as I’d wheel into the dining room for my breakfast tray.  Back then, EVERYTHING lay outside my comfort zone -- even coming to breakfast.  But Ed stretched those boundaries just a little bit wider.

“When I can walk again,” I'd tell him, “I’m going to come back and be a volunteer like you!”

And for more than a year now, I have been going back.  Each week, I volunteer at the rehab hospital, keeping patients company as they undergo therapy in the gym.
The reunion is worth it!

When I think how far my comfort zone has expanded in the last 3 years, what's a few more yards of ice??



After that trek, I log the next 25 miles mostly indoors.  But getting out in the winter makes even the smallest steps feel like a victory.

Friends Ruth and Asa help me navigate the snowy city.





In Washington Square, I find my favorite picnic spot buried under a sea of white.



And my first sip of lavender green tea tastes like much-needed spring.

Little by little, as if by magic, the snow disappears.


Mile Marker 1600:

The temperature hits 40 for the first time in months.

My friend Robert shows me his latest accomplishment -- the elliptical trainer.  He's inspired me before.  But his newest idea pushes at those walls, just like Kelly's snow shoveling!

At Mile 1600, Trainer Ian gives me a quick tutorial.  PT Colleen suggests putting my Genium in "free swing" mode.  PT Deb sticks Dycem on the pedal to keep my left foot in place.

I grip the handrails, push back against my socket, and step onto the machine.   In "free swing," my Genium is as flimsy as a piece of spaghetti.  But it works.  As I push the pedals forward, it comes along for the ride!

I start out tentatively, arms braced on the center handles, eyes glued to my left foot.  Gradually, I find a rhythm.   One hand at a time, I reach for the machine's moving arms.  Take my eyes off the Genium for one split second and then another.

At day 3, it still looks more natural than it feels.  My arms work overtime, and my left foot isn't quite stable.  But at least I'm moving!

Deb and I even have a little FUN with it...


Of course, leaving your comfort zone is much easier when you've got your team around.  Slip-ups are laughable.  And anyway, pedaling the elliptical is nothing like walking on ice!

But it is something new.

Each time I cross that boundary, a tiny bit of fear melts away.  Step by step, mile by mile, the desire grows.  I want to travel farther and farther.

Does magic really happen out there?

Maybe, maybe not.   But sometimes, I discover a burst of confidence.  Sometimes, I get a good workout.

Or sometimes -- as in the case of the arctic tundra -- I realize just what I can handle.

And that knowledge holds a magic all its own.