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.

Monday, May 28, 2012

Handled With Care

Mile Marker 446:

Cleverness is a gift; kindness is a choice.
--Jeff Bezos, founder of Amazon, speaking at Princeton University’s Graduation

‘Tis the season for speeches and send-offs.  Everyone, it seems, is going somewhere.  Moving on.

Last Wednesday, I stood behind a podium as tall as I was.  The auditorium was filled with doctors, nurses, hospital administrators, patients, and families (including mine).

At Mile Marker 446, I was honored to be speaking at Jefferson Hospital’s Excellence in Trauma Awards. 

My voice echoed through the large room.  I talked about strength, compassion, courage, and hope.  I tried to explain all that my medical team had done for me.  How, for the past 18 months, I’d been handled with such CARE.

As the words unfolded, I studied the audience.  Nods, chuckles, even a few tears.  But was I getting my point across?

Near the end of the speech, I spotted a friendly face in the front row.   Dr. Nate.   He looked different in his suit and tie.  But then he shot me a smile and a quick wink.  Yep, that was him.

As a resident, Dr. Nate embodied what I was trying to say.   Day after day, his tall frame filled my hospital doorway.  His disarming half-smile calmed my nerves.

He became so familiar that I never even bothered with his last name.  Like Madonna, or Adele, or Prince -- he was simply Nate.  The Best Supporting Surgeon on my amazing team.

He set the bar high for newer residents.  I wouldn't let them touch my bandages or detach the Wound Vac machine without his supervision.  And he was a MASTER of distraction.   He used his sense of humor – along with a strong IV drip -- to keep me in stitches !  (The "ha ha" kind.)

But the moment I remember most came five days after my bowel obstruction surgery.   I just couldn't bring myself to try solid food.  I could not forget that excruciating pain.

With impeccable timing, Dr. Nate popped into my doorway.  “Want to see a picture of your intestines?” he asked.

He wore a mischievous smile.  It was lunchtime.

I glanced down at the untouched Salisbury steak on my tray.  “Sure,” I said.  “Why not?"

Nate bent down to show me.  In the photo, my intestine looked like a pinkish-brown zig-zagging ribbon, gathered tightly by a thick, dark rubber band.  Below the band, it swelled up like a bubble of inflated chewing gum.  The source of the pain.

Nate pointed to the evil-looking rubber band.  “See this part?” he said.  “It’s not there anymore.”

So that was it.  He’d given me proof.  My intestines and I were free!

With that picture engraved in my mind, I started eating.  Right then and there.  Sometimes medicine just needs a little extra touch.


When the awards ceremony ended on Wednesday afternoon, I talked with my nurses and doctors.  Thanking them for all they'd done -- however big or small.

"But I only took care of you a few times," said Nurse Leslie.

"You were there for me when I needed you," I replied, "and you're there for OTHERS everyday."

Nurses Julie and Deb...
Where would I be without them??

Each person at that ceremony -- doctors, nurses, patients, and families -- had stories to tell.  Snapshots of strength and sadness, courage and hope.  Small moments they remembered.  People and events that had come together to create HEALING.


I chatted with Dr. Nate, too -- this time, without the need for IV cocktails or intestinal photos.

I learned he has 3 kids.  I learned he’s a cyclist who often bikes to work.  I also learned that it's his last year here, that he’s leaving in June to take a research position at another hospital.

This third fact occupied my mind the whole way home.

Because when Dr. Nate goes, my hospital will lose a drop of its KINDNESS.  Just one small spoonful in the vast ocean that exists there.  But it will leave a ripple. 

As a teacher, I've grown used to graduations.   I know that endings are beginnings, too.  Still, not a day passes when I don't think about my medical team.  They are always there for me in the background, urging me ahead as I move on.

With Nate’s departure this summer, a new class of residents, nurses, and students will arrive -- full of enthusiasm and ready to learn.    

Pay attention, I want to tell them.  That bar is HIGH.

Because you are learning from the BEST.

Pedal on, Dr. Nate --
Wishing you a smooth road, a swift tailwind, and a safe ride!

Sunday, May 20, 2012

Gotta Run

Mile Marker 442:

I signed up for the running clinic with less than 12 hours to go.

This is how I face most decisions that cause me fear.

I am an Olympic-grade waffler.  I can list pros and cons faster than a speeding bullet.   Make excuses more powerful than a locomotive.  And leap "worst-case scenarios" in a single bound.

For months, I’d been looking forward to the Amputee Running Clinic sponsored by the Challenged Athletes Foundation.  Even with surgery in April, I thought, I'm sure I’ll be ready by then! 

But as May 19th approached, it was clear that I was nowhere near ready.   Last weekend, I couldn’t even put on my prosthesis!

At 9:30 Friday night, I sat waffling at my computer.  Finally, I closed my eyes, pressed "submit," and sent my registration flying through cyberspace.  Ready or not, I was going to learn to run.

It was just like the start of every skate season. 

I'm a fair-weather athlete.  When our club's first skate rolled around each spring, it always caught me off guard -- like a crocus popping its purple head through the snow, except a whole lot FASTER!

Tuesday night skates were expert level: speedy, hilly, and incredibly long.  Lacing up my skates, I imagined the disasters to follow:  lagging behind the pack, burning hamstrings, climbing mile-long hills.   And yes, on the first leg of the skate route, they usually all came true!

I should have never come out!   I wheezed to myself, struggling up Lemon Hill.   

The year-round skaters (a.k.a. muscleheads) whizzed by me.  “Great night for skating!” they’d call out.  Yeah, right.

On that first hill, I cursed the air for being so humid, the trees for being so buggy, the street for being so gravely, and of course, myself for being so out of shape!  But gradually the road leveled out.  We’d hit traffic, or a stop sign, or a red light, and I’d catch up to my friends.  We’d start talking, and before I knew it I found myself at ease -- crouched down low, at high speed -- careening down toward Kelly Drive again.

Two hours and 16 miles later, inflated by endorphins and friends, I couldn’t imagine another Tuesday night without skating.


Yesterday as I drove to the running clinic, my mind was again flooded by things that could go wrong --  pain and pressure, skin irritation, stumbling, sweating out of my socket....

I’ll just watch from the sidelines, I told myself.  I'm not ready for this yet.

On the sunny field, a crowd of 50 amputees circled together for stretching exercises.  I did some.

By the time we lined up for drills, I decided to try some of those, too.

My volunteer trainer was Sophie, a freshman in college -- a runner herself – working with amputees for the first time.

“I might not do everything,” I told her.  “I’m still recovering from surgery.  I’ve only been back in my leg for a week.”

But as the coach began to tell us about running, my trepidation faded into excitement.  He asked the "above-knee" amputees to step to the front of the line.  We all stood there, quiet and tentative.  Apparently, I wasn’t alone in my ambivalence.  No one wanted to be first.

“You!” he said suddenly, singling me – and my Genium – out.  “YOU have an above-knee amputation!”

The crowd laughed.  (It's tough to hide an amputation in shorts.)  I stepped up to the orange cones.  So did the other AKs.

He divided running into 5 steps, explaining each one:
  • Leaping onto your prosthesis,
  • Pulling back with your upper leg muscles,
  • Releasing off your toe,
  • Pumping your arms, and 
  • Reaching forward with the opposite leg to extend your stride.

At PT, I'd already learned that first step:  leaping.  It’s a process of trusting your prosthesis, expecting it’ll be there when you land.  Learning to control your knee so it holds steady under impact.  After months of practice, I became a fun and reckless leaper, entertaining fellow patients with my clumsy ballet.  

Well, I can do that part, I told myself. 

Just then, there was a tap on my shoulder.  I turned around to face my PT Deb, the one who taught me all my basic skills -- including how to LEAP!   Magically, she had shown up to volunteer.

Gait belts secure, we leaped, pulled, released, pumped, and reached  across the distance between the cones.  As the coach added elements to the mix, our trainers shouted directions:  “Pull back!”  "Toe!"  “Reach!”   And of course, the all-important, “BREATHE!”

We watched each other’s prostheses – mechanical, microprocessor, specialized, and motorized – move against the ground.   

My new buddy Miles pounded the turf behind me on his Rheo Knee.  Partway through the drills, he needed a tune up from the pit crew.  They made his leg longer!

Back and forth we went, patting each other on the back and cheering each other on. 

I tried to do Deb and Sophie proud.

In the time-span of an hour, there was no way for a beginner like me to integrate all those skills.  But it was definitely a start.

When the coach called a break, I was hit by that "first-skate-of-the-season" feeling.  Not the one from the grinding push uphill, but the one from the gliding coast down.  

The feeling that it’s only the beginning of the season.  The knowledge that I still have a long, long way to go.   And the clarity that I am in it for the LONG HAUL.

After all, did I really I have a choice?   Talk about Olympic-grade power...

These days, tasks often seem too huge and intimidating.  Too impossible to even attempt.  But Mile 442 reassured me that the old skating rule still holds true:  

Sometimes the only way to start is to just lace up and… LEAP in.

Thursday, May 17, 2012

Act II

Mile Marker 436:

Places, everyone!

The theater lights dim.  The curtain opens.

On the verge of Mile 436, I take my place...  

...which happens to be in the backseat of my parents’ car.  I am riding among a mass of baby supplies, gifts, luggage, snacks, crutches, and a shower chair.  

We are headed to Vermont to greet my new nephew-to-be.

It may not be fair to the little guy to call this Act II.  After all, he hasn't even been born yet.

But in March 2010, we took a similar journey when his big sister -- my niece Riley Cate -- was born.  We followed the same rural, winding roads.  We stared out at the same sunset-lit mountains.  And with each passing hour, the same anticipation grew.  That was Act I.

Act II is a much different story.

The intermission has not been kind.  It makes me wish I'd never left the theater.

Act II, Scene 1:   I wear headphones in the backseat.  My mood alternates between angry teenager and know-it-all critic.   When we stop to stretch our legs, I unfold myself slowly.  Test the suction of my prosthesis.  Limp in and out of sticky rest-stop bathrooms.  Try not to slip.

Act I was lighter and happier.  I trailed behind my parents in my little Honda, thinking of baby names and James Taylor lyrics.  Winding through hills and farmland, I called my sister Sam and brother-in-law Gregg for updates on Sam's labor.  With each mile, I readied myself to meet my new niece.

Act I reached its climax as we dashed through the hospital parking lot.   Breathless, we arrived at labor and delivery just minutes before Riley was born!


Act II, Scene 2:  This time around, we arrive midway through Sam’s labor.  Things are moving slowly.  The nurse tells Sam to walk a few laps around the unit floor.

“18 laps is one mile,” she says.

Sam rolls her eyes.  Sweaty, uncomfortable, and tired, she does not feel like going anywhere.

“Come on,” Gregg and I urge.

“Do 10 laps,” the nurse says cheerily.

We let out a communal groan.  Ten??

But we set out anyway. 

My prosthesis pinches horribly.  Gregg is exhausted from lack of sleep.  But there's an unspoken agreement here – Sam is the only one allowed to complain.

After 3 laps, we return to the room.  The nurse accepts our effort, and we breathe a collective sigh of relief.  The walk is over.  

Along the way, we've somehow passed Mile Marker 436.


A few hours later, I watch in awe as my nephew Brennan Jack struggles his way into the world.  He has a full head of blonde hair, and his cry sounds like the tiniest goat you’ve ever heard.   He nestles into my sister as if they’ve known each other forever.

By evening, my parents and I retire to the hotel.  I am limping.  My leg has a new blister -- puffy, blackish, and scary-looking.  I send a text to Prosthetist Tim, but there’s not much he can do from 400 miles away.  Cut down your wearing time, he texts back.  Keep an eye on it.

Act II, Scene 3:  In the morning, I hop down the hotel steps on my crutches.  When we arrive at the hospital, I climb reluctantly into a wheelchair.  My dad pushes me through the long hallways toward the maternity unit.  

I focus on the the walls, averting my eyes from the doctors and visitors passing by.  I'm acutely aware of my cargo pants, rolled up to the ankle on one leg and to the (invisible) knee on the other.  For some reason, I feel more conspicuous than ever.

I want to hold up a sign that says, “I am NOT a patient here!”  

Instead, it feels like I'm wearing a scarlet letter A for AMPUTEE.


I wish I could go back to Act I.  At that time, visitors were limited due to a flu outbreak, so Sam and Gregg picked me to be their designated "helper."  I brought in bagels for breakfast.  I held Sam's towel while she took a shower.  I walked my fussy niece up and down the hospital corridor while Sam and Gregg dozed.  I cradled little Riley as the nurses prodded her for a hearing test.  I took photos.  I called the anxious grandparents.  I was able to do it ALL!

But this is not Act I.  

We finally reach Sam’s room.  I gather my crutches and rise from the wheelchair with relief.  

Someone offers me the chair by the bed, and I willingly take it.

Immediately Sam hands me baby Brennan.  Freshly bathed, his hair shines in the afternoon sun.  I marvel at his little hands – his narrow fingers and sharp nails – peeking out from the swaddled blanket.  I am instantly in LOVE.

I stay in that chair for the whole afternoon.  And in a way, it is enough.

But in another way, it’s not.


I have always been the big sister.  

As the oldest of six kids, I was dubbed the “mini-mother.”  By the time Sam turned two, I babysat.  I sang her to sleep with songs from my 7th grade musical.  I braided her hair for school pictures.  When I left for college, she closed her nine-year-old self in the bathroom and cried.

Now, I can’t even fetch her a drink from down the hall.

I'm no longer the competent, nurturing helper I was during Act I.   In fact, I’m not even sure what role I play now.


Act II, Scene 4:  The next day, in the Vermont rain, baby Brennan comes home. 

Still on crutches, I navigate Sam and Gregg's wet driveway and hoist myself up their wooden steps. 

In the living room sits the family’s newest “big sister” – Riley Cate.  At two years old, she is already a lot like me.  Outspoken, intense, extremely BUSY.

She points to the baby.
  
“Brennan,” she pronounces proudly.

Tentatively she touches his blanket, his golden hair.  She swallows him up with her huge eyes.

When Sam whisks him away for a diaper change, Riley bursts into tears!  She’s holding out her hands.  She wants something, but we don’t understand.  And she doesn’t yet have the words to explain.

Riley’s too young to know that this event pushes her into the next chapter of her own life.  Molds her into a new character.  Changes her role.

Guilt washes over me for being so selfish.   Act II has rocked more worlds than just mine.

Gregg takes Riley onto the porch and scoops her into her little swing.  It’s covered by a roof, protected from the rain.

As the swinging starts, her smile gets wider and wider.

All things considered, she’s handling this like a champ.  A STAR, actually.

She is going to be an excellent big sister.


Act II, Scene 5:   The afternoon passes quickly.  Mom helps Sam organize the baby’s clothes.  Dad helps Gregg reassemble the old Pack and Play.  

I sit on the couch, cradling Brennan in one arm and entertaining Riley with the other.


Too soon, we hug goodbye and hustle out to the car.

I search for words.  A parting line that -- in some small way -- will bridge my roles between Act I and Act II.  But at that moment, I can't think of anything.

So I toss my wet crutches into the backseat and climb in.


As we're driving home, the line finally occurs to me.  

It's from the intermission.  From one particular day filled with despair and waiting.  A day when I lay in my hospital bed sickened and weak, an NG tube slurping greedily through my nose and throat.  A day when I could barely talk or lift my head.

On that day, a small basket of flowers arrived.  In it was a little card that read:  Always remember you are STRONG, BRAVE, and AMAZING!

She'd signed the names of all our siblings and cousins, but I knew those words were really from Sam.

Little sister to big sister.

This is the message that fills the gap between Act I and Act II.  It's the line I can deliver right now, regardless of health or physical capability.

To Sam and Gregg.  To my parents.  To all the helpers of the world.   

To Riley Cate and others who -- like me -- are struggling to learn their new roles.

And to little Brennan Jack, who’s (hopefully) sleeping as I write this….

Always remember you are STRONG, BRAVE, and AMAZING!

Places, everyone!  Pull the curtain.  Dim the lights.  

The show is just beginning.

Wednesday, May 9, 2012

My Other Half

Mile Marker 428:

I’m searching for a pair of matched socks.

But my sock drawer is a sea of white.  A clutter of cotton, dotted here and there with stripes and pom-poms.

The socks have gotten used to flying solo.

So have I.


But my Genium's back.

When I look down, I’m shockingly DOUBLED.

I'm surprised to see two feet.  Two sneakers.  Two knees -- although not a matched pair.

This week has been tough.  I imagined it would be easier to begin walking again. 

Five weeks ago, my prosthesis and I were like an old married couple.  Now, it's a partner my body barely remembers.


Still, it is refreshing to see another shoe down there…
so I retrace our steps an hour at a time. 

My first indulgence:  making lunch.   With a cane, I hobble around the kitchen collecting items from the fridge and pantry:  an avocado, a bag of spinach, a container of nuts.  I relish my new freedom as I pass the food from one hand to the other.  Just the day before, both hands were busy with crutches!

For better or for worse, is how the vow goes.  And so does the week.

The next day, I wear my prosthesis for two hours.   It is NOT comfortable, and my back aches from walking unevenly.  But I'm hopeful things’ll improve. 

On the third day, Mom and Dad take me out to an early dinner.  Hoisting my leg into the car, the 10-pound prosthesis feels much, much heavier.  The parking lot is a steep hill.  The restaurant floor is just a little too slippery.  And when I sit down, my foot gets stuck on the table leg.

On the way out, I catch my reflection in the window.  With each step, my shoulder droops and my hip juts out.  It's how I walked LAST May.

“I’m just deconditioned,” I say to my parents, trying to hide my discouragement.   I want to believe it.   

In sickness and in health, I guess.

I remind myself of the good times I've had with my Genium.   On the Boardwalk.   Kelly Drive.  The Wissahickon Trail.   How we showed off our expertise in front of kids, doctors, nurses, and therapists.  How -- after months of practice -- we walked together like a well-oiled pair. 

For richer or for poorer.   I convince myself that, with hard work, more fun lies ahead.  

After all, it was only last Wednesday that I stepped back into my socket.  Sweat glued my hands to the parallel bars.  Limping along, I touched my Genium's foot to the ground.  I couldn't even put weight on the left side.  Finally, Prosthetist Tim decided I was safe enough to go home using crutches.

Now I'm cautiously navigating around the house -- past Mile Marker 428.


Every relationship has its ups and downs. 

But pain shatters this one like glass.  Heat and ankle-blades reverberate through the socket, wiping clean the small successes of the week.

“Wear it little by little,” says Dr. L at the rehab hospital.  “You need time to heal.”

She'd make a good a marriage counselor.


This morning I take a deep breath.  Once again, I slide up the pull-bag and wince into my prosthesis.

The first steps are the worst.  The socket pinches and pulls.  I want to yell, GET WITH THE PROGRAM!   I want to take it off.

But instead, I set up a full-length mirror on the edge of the dining room table.  Cane in hand, I pace back and forth across the kitchen floor.   I squeeze my adductors against the frame of the socket.  I tighten my glutes and core.  I swing my arms and rotate my hips to imitate a natural gait.  

To have and to hold from this day forward.  
I watch as my Genium and I become a team again.

We're still getting reacquainted.  Searching for our rhythm like a pair of mismatched socks.

Rekindling our spark the only way we know how.

One step at a time.