A Thousand Smiles

Mile Marker 632:

The hospital wakes up early.

First comes a low, rising hum from the hallway.  On my pillow, I listen to the hushed voices.  The rolling carts.  The beeps from call buttons as the place comes alive.

Residents and med students go door to door, gently stirring patients awake.  “Good morning, Ms. ____.  How are you feeling today?”  

We yawn and stretch.  We're not really sleeping anyway.

Six days pass in a blur of abdominal spasms, IV drips, and nausea.

As usual, progress is slow.  More interesting is the backdrop.  The journey.  How each small moment mounts up like a teeny, tiny mile marker.

The overarching goal:  TO EAT WITHOUT PAIN.

I'm admitted through the ER late Sunday night.  The first few days, I barely get out of bed.  I doze on and off in a sleep of hunger and morphine.  I keep the sickness bags close; the NG tube, closer.  I stare at the pink clouds out my window.

My sibs and cousins send me beautiful flowers and balloons.

On Day 4, I plod along the hallway on crutches.  Each step yanks the tube from my nose and jabs the IV port into my arm.

On Day 5, they remove the NG tube.  (Thank goodness!)  Now, I can bend to put on my prosthesis.  Its socket feels foreign, like a wooden shoe rubbing all the wrong places.

I start walking anyway.

Day 6 reason to smile: "Clears!"

I do laps around the halls with anyone who'll walk with me -- Dad, Mom, Mark, Aunt Patti & Uncle Steve.  Nurse Deb, when she takes a break from work.  Jen and Shawn when they visit.

On each go-round, the nurses greet me with witty, supportive comments.  They joke about decorating the NG tube with ribbons and beads.  "Looking good!" they call -- no matter how I really look.

But they're sympathetic, too.  I’m here YET AGAIN.  A frequent flyer.

On these short journeys, I notice things in snapshots – pill drawers, ringing phones, blinking lights, flashing monitors.  Bed alarms and bulletin boards.  Tubes and tanks.

Nurses buzz in all directions.  Doctors stroll through rounds.  Patients roll to the operating room on gurneys.  Rooms are cleaned.  Meds are distributed.  IVs are hung.  Around every turn is another story.

A drug-induced smile
in the ER

And in the midst of it all, I get the support I need.

Nurse Christine appears like a guardian angel in the ER.   Nadia shows unending patience as she suctions my stubborn NG tube all night long!

The team on 7 Center welcomes me back like an old friend.

Drs. J, M, and W drop in magically, just when I need them.

Each shift feels as secure and safe as my own family.


This post might well be called What I Did Over My Summer Vacation.  (And it truly is my mom's vacation -- coincidentally, she'd taken this week off from work.)

It is not FUN, but there are some funny moments...

I can't leave the unit,
so my "messenger"
meets him in person!

On the morning of Day 4, Prosthetist Tim shows up at my door.  Surprise!   Down the hall, his wife Chris has just given birth to their fourth child!  I get to see Timothy Leo's very first baby picture!

Then on Friday night, a gang of clowns tumbles down the hallway.  No kidding!

They're Clowns for Medicine -- future doctors, I think.  Giggling, they tell jokes and write out prescriptions:  Take one SMILE before breakfast, two HUGS after lunch, one KISS at bedtime.  

I even get my own clown name:  Bozo the Bionic (or Bozonic, for short!).

In the hallways, I meet face after face from my Jefferson past.  Doctors and nurses who recognize me and my family.  In a split second, they conjure up details from the past 2 years.  Critical Care to Post-op.  Moments that are still foggy in my own memory.

This staff has pulled me through a lot.

"They have to do their jobs,"  I say during one of our walks.  "But they don't have to CARE."

They don't have to hold my hand when that dreaded NG tube is inserted.  They don't have to cover me with heated blankets.  And they don't have to ask me about the book I'm reading.

But they do it anyway.

And they do it for others, too.  I see it on my travels.  Everywhere I turn.

This hospital has a heartbeat all its own.

One lap is only 2/10 of a mile.  But if you walk slowly, you find a thousand smiles along the way.

Before the Rain

Mile Marker 610:

When I drive into the rehab parking lot, PT Deb is waiting for me under the overhang.  

“Thought you’d come by boat!” she calls, as I maneuver my body out of the car.

It’s raining torrentially.  Water rushes into the sewer grates.  My instinct is to run, but I step gingerly through the puddles.  Slowly, so each step's secure.

I’m about 3 minutes late which, it turns out, isn’t so bad.  The gym is practically empty.

My friend Dan wheels up in his chair.   “I had to wait 20 minutes before I could even get out of my truck,” he says.   His wheelchair got soaked, but the seat cushion stayed dry.  A small victory.

Rewind a few hours.  As I'm getting out of bed that morning, I hear we're in for 2 days of rainstorms.  Ugh.

I don't rue the rain.  It waters the garden, saving me precious time and energy.

But as I peer out the window, the sky’s losing its optimism.  Humidity gathers in little droplets on the telephone wire.  

I have to get out there before it starts.  All at once, I have a desire to BEAT this storm.

By the time I get ready and step out the front door, light sprinkles are already falling.   

I can make it around the block, I tell myself.

Walking with an umbrella is a balancing act, but I open it anyway.  My Genium shouldn't get wet.  Spots of water dot the gray sidewalk.

A guy on a bike rides down the middle of the street, dark hair blowing – helmetless - in a t-shirt and jeans.  He’s carrying a cup of coffee in one hand; a bag slung over his opposite shoulder.  He’s oblivious to this light drizzle.  Unaware of how an oil slick (or a swerving driver) could cause his thin tires to skid out from under him.

There’s a tiny part of me that’s envious. 

But mostly, I see RISK written all over him.  He’s carefree now, but his life could change in one second.

I liked your comments about Do It Now, the slogan from the previous blog post.  I agree -- it is about Zen and Carpe Diem and finding joy in each moment.  But I've been thinking, and to me, there’s a corollary to it:

Do It Now because you never know what’s going to happen next.

Over the past two years, I’ve been caught unaware just a few times too many.

Doing It Now helps me feel more prepared.

It’s an illusion, of course.  Just because you’ve washed the dishes, and finished the laundry, and packed a bag, doesn’t mean you’ll be READY for a midnight trip to the ER.  But somehow, it's just a tad easier to face. 

If you know me, you know that the desire to be prepared runs deep in my blood.  (Even after 19 units of replacement blood, I haven't lost it!)   

It's genetic, I think.  In September 1969, when my mom went into labor with me, her first instinct was to clean the oven.  No kidding.  Her sister – my Aunt Candy – stood in the kitchen, arms crossed in panic. “Don’t you think we should go to the hospital?!” she cried.

Well, like mother like daughter.  Mom was just fitting in one last thing before that storm -- a.k.a. ME!

This week, I walked between the raindrops, stealing a stroll whenever I could.  Block after block without straying far from my house or parked car.

I watched the clouds darken till I couldn't tell the difference between the buildings and the sky.  

But there were lighter moments, too.  After a doctor's appointment, I met up with friend Deb for a quick chai.


And later as the sky opened up, I ducked into Garces Trading Company with Shawn.


When the sun finally returned, I walked (and talked) “long distance” with Bosco in Delaware, Marla in Illinois, and Brett in Arizona.

Cousin Brett's cameo
"appearance"!

I guess when your life’s yanked out from under you, it's only natural to try to fasten it securely in place.  Batten down the hatches for next time.  Build an ark BEFORE the rain comes.

After all, even the lightest drizzle could turn into a hurricane.  Or worse. 

But these past few miles, I was surprised to discover there's life DURING the rain, too.

And AFTER.

Do It Now

Mile Marker 600:

At Mile Marker 1, my friend Jeff suggested I post a column on the blog for upcoming walks.

What potential!  I thought.  People could join me!  The more the merrier!  There’s power (and fun) in numbers! 

I imagined the places we’d visit:  gardens, hiking trails, museums….  I looked forward to meeting new blog followers.  Traveling near and far.

I’ll do it soon, I thought, when I’m able to PLAN.

That was more than a year ago.  Back then, I'd just graduated from using a cane.  I was knee-deep in socket pain.  I concentrated intently on each and every step.

Learning to run
(well, kinda!)

600 miles later, a lot has changed.  

But I still CAN'T PLAN!

With Mile Marker 600, came more abdominal pain.  Wednesday night, it got so bad I summoned the troops (a.k.a. my parents).  Bag packed for the hospital, Mom sat in my bedroom until – hours later -- the pain subsided enough that we decided not to go.

For the next 2 days, I nourished myself with clear liquids and quiet activities. 

I organized 2 summers’ worth of France pictures.  I baked some magnifique mini-quiches -- which are now in the freezer because I can't eat them yet.

...not that!

Eat this...

I set up a calendar for the new school year.  And as I did, I was shocked by a disturbing trend: 

Over the past 600 miles, I’ve CANCELED more plans than I’ve kept.

Appointments, lunches, walks.  Meetings at work.  “Scratch that” has become my motto.

No, that's not me!  I think.  I'm organized.  I'm reliable.

It’s just temporary, I tell myself.  But it’s like trying to believe there’s no Greenhouse Effect in the midst of the hottest summer on record.

So at Mile Marker 600, it was blatantly obvious:  I needed a new slogan.  And during my "sick days," I had plenty of time to come up with one:

DO IT NOW!

How does that sound?  It's my version of Nike’s Just Do It.   I’ve been inspired by Oscar Pistorius and the other Olympians.  They make me want to do it ALL now!  

But the toughest part is I never know when the pain’s going to strike.  These days, if I can do one small thing – wash the dishes, change the linens, walk around the block – I’m ahead of the game.

DO IT NOW  takes each moment as it comes.  It allows me to make the most of the times I'm feeling good.  It’s a split-second decision to get out there when I can -- with or without a plan.

I've MISSED a lot over the past 21 months -- planning vacations, going out at night, jumping on my bike to run an errand.  Reminders linger around every corner.  

For 15 years, I skated every Sunday morning.  Now, I miss jumping over potholes and cruising off curbs.  I miss dodging other skaters and climbing hills.  I miss the steamy exhaustion and the adrenaline rush that comes along with it.

My friends still skate.  Often, I meet them afterward for the post-skate brunch (on days when I can eat, anyway).   You might argue that I got the better end of the deal.  Food and company without all that sweat and hard work!

But last Sunday -- during that morning in NoLibs -- it occurred to me:  I had a place to go!  I had something to do!  It was an adventure, and it was so much FUN!

At Mile Marker 600, Jeff's suggestion from Mile 1 still rings in my ears.  I want to get out, walk, and explore.  I want YOU to come along.

But lately, my health has made it so difficult to plan!

DO IT NOW, my gut tells me.  (And the gut is a powerful thing!)  

So the "plans" will be come-as-you-are.  Spontaneous.  Easy.  And, yes, FUN!

Check out the new WALK WITH ME column in the upper right corner of the blog.  Watch for postings of adventures and outings.  Check the Facebook Page, too.

Comment and post your own ideas.  

Join me!  

JOIN US!

We’ll walk together!  

There’s POWER and FUN in numbers!

It’s one small step, but isn't that what this journey's built on?

... Best of all, there's a last minute cancellation policy  :)

NoThing Like NoLibs

Mile Marker 588:

Early Sunday morning, my brother Mark shoots me a text:  2nd Street festival in NoLibs today if you're interested.  

And although there's no telling how my breakfast'll digest, I jump at the chance.

Mark lives in a neighborhood that defies description.  Even its nickname – “NoLibs” – brings to mind those MadLibs that filled me with fill-in-the-blank fun back in elementary school!

Here's one:

On this particular Sunday, the streets are full of ____________  people, ___________  businesses, and ___________  food.

(Choose your own adjectives:  eclectic, bustling, far-out, wild, quirky, tasty, fried, sweaty, colorful, crafty.... not necessarily in that order!)

As we walk the street fair, my eyes grow huge.  “Kick-boxing with a heart?!” “Blind dog rescue?!” “Meatballs on a stick?!”

Mark ambles along beside me, ever calm and casual.  “Where’ve you been the last year and a half?” he says.  “In a box?”

Well, sort of.

NoLibs is Philly lingo for Northern Liberties, an area about 6 blocks by 6 blocks, due north of Old City.

It's a reconstructed mix of broken-down factories, vacant lots, and old rowhouses that's transformed itself into a cool collage of gardens, murals, and funny-looking dogs.

This festival turns the street into a carnival.   

But things are always a bit off the charts here.  The pedestrian walkways are filled with tapas food, art studios, and cupcakes.  The bike racks reach the sky.

On Tuesday nights, I used to cruise through with the skate club, speeding down dark, narrow alleys into the “The Piazza," a huge, open-air courtyard of bars, shops, and restaurants.  Hot and sweaty, we’d catch an inning of the Phillies game on the Piazza's big screen T.V.  We’d duck into the Pink Dolphin market for fancy bottles of water.  Or buy $1 hot dogs from the guy who always set up a portable grill.  Then we’d zip off again into the humid night.

But now, I’m on foot.  Well, “feet” if you count the Genium.  Mark and I circle the street fair twice.

And as long as we keep moving I’m ok.  But as soon as we pause at a booth or store window, my socket loosens. 

“I just lost suction,” I tell Mark as I limp out of the crowd.

I try to untwist the valve cap, but it's challenging on this hot, sunny day.  The cap is sweaty, my fingers are sweaty, and -- when I finally get it open -- sweat drips out of the socket itself.  I reach in, maneuvering my leg to squeeze out the air.  Then I replace the cap.  Easier said than done, actually.  Everything expands in the heat, including the valve seal.  On two separate occasions, Mark has to squat down and use his leverage to twist it back on.  Strange sight we are, I'm sure!

During my first foggy days in the hospital, the doctors gave me a red heart-shaped pillow.  (I think it was to promote coughing and lung capacity.)  Family and friends signed it with black Sharpie marker, and it now sits on my bed -- a souvenir of those early days of recovery.

Every day, my eyes take in the messages on that pillow.   One of the most memorable is Mark's:  I'm here for you the whole way back.  Keep fighting!

Even now 21 months later, he hasn't reneged on his promise.  Barely a week goes by without a text or phone call to see if I need something from the supermarket.  If I want to split a pizza or take a walk.

Today he tempts me with funnel cake and sno-cones.  But more than that, he gets me out of the house on a Sunday morning, while my old crew is skating.  (Help with the valve cap is just a bonus!)

“What’s that, Daddy?” I hear from behind us.  A little girl is pointing to my leg.  Her dad looks at me sheepishly, so I jump in quickly with my "robot leg" explanation.  I distract her with my red toenails.  The dad breathes a sigh of relief.

But to tell you the truth, most folks at this festival are NOT looking at my leg.  

Their vision is filled with sock monkeys and marshmallow shooters.  Their mouths are stuffed with cheese curds (ewww!).  The music beats loud in their ears.

Cool photo by Mark!

It’s nice to take a break from reality.

And no better place to do it than NoLibs!

Running Away

Mile Marker 584:

"Run Forrest run!"

You know that scene from Forrest Gump where Forrest breaks out of his leg braces to escape the gang of boys?  And he just keeps running till all his troubles fade away?

That’s what the last 20 miles have been like.

Believe it or not, I’m coming off a string of 3 MILE DAYS – the most I’ve walked in months!

I hang with the nieces.

I haven’t been feeling my best, so I bribe myself.  I walk slowly to Philly Java for an iced chai.  I stretch my tolerance on the treadmill from 20 minutes to 25. 

We celebrate my brother Steve’s birthday (only a week late!) on the steep sidewalk of Chestnut Hill. 

I meet up with friends Ruth and Asa for a night at our old favorite, “The Noodle House.”  Asa's grown a lot since Mile Marker 46!

The days are dotted with abdominal pain.  But I tell myself if I walk after dinner, the food will digest.  If I just move my feet, it’ll distract my mind.

And I do see some cool stuff!

When all else fails, I count from 1-100. The rhythm beats out my steps.  I do it over and over again until the walk is complete.  The numbers stretch out in a calming line before me.  They’re a measurement of their own.   And they keep my mind from wandering.

I have this illusion that if I just stay in motion, the pain won’t catch up.

My other strategies were blown to bits by my last hospital stay.  And while I haven’t exactly thrown them to the wayside, it feels good to have a new trick up my sleeve.  This week it’s MOVEMENT.

"Rest is rust," prosthetist Tim taught me from the very beginning.  It's one of his little phrases I collect like party favors.  Words that give insight into my new life as an amputee.

He's right.  When I stop moving, the muscles stiffen.  My joints become less flexible.  When I sit too long, my socket digs in.  If I lose volume, I lose suction. 

But there's more to it now.  I worry about eating, and chewing, and swallowing, and breathing.  Sitting still gives the pain time to catch up.  I imagine even more scar tissue webbing around my intestines.

I know that's not really how it works.  But movement creates an invisible force-field.  It distracts me from wondering, What if this doesn’t get better?

I dreamed this week of driving on I-95, surrounded by traffic at such a speed that I could not change lanes and could not exit.  On either side of me, vehicles barreled by.  Big rigs with thick, heavy tires.  Reckless pick-up trucks.  I was trapped.

In the passenger seat beside me, rode my Aunt Robin.   We’d started out for dinner but somehow ended up on this raceway together, unable to escape.

Finally, traffic backed up to a crawl.  We WALKED down the nearest exit ramp, dragging the car beside us like a sled.  Halfway down, a group of benches appeared like an oasis.  We sat.

“Are you ok?” I asked Aunt Robin.  “Are you in pain?”

She nodded, rubbing her arms and legs.  She has trouble walking too, yet I could see she was determined to make the trip with me.   We had no other choice.

I awoke with a feeling of overexertion.  Of going way too fast.

But they say that people in your dreams show you a part of yourself.  If that’s true, Aunt Robin represents the part from which I draw strength.  The part that pushes the pain to the background.  The part that never stops moving.

This week, I RAN.  I mean really and truly!

Ok, it only lasted 34 seconds.  And my hands were planted on the treadmill rails.  And there was a gait belt securely fastened around my waist.  And PT Deb gripped that gait belt with both hands.  

I watched my running shoes, commanding my knee to bend.  I listened for the rhythm, willing my steps to stay even.

Still, it was legitimate.  Both feet left the ground!

  

It was when only I looked up that I faltered.

“4.7 miles an hour!!!”  I yelled, shocked at the speed on the treadmill display.

With that, I completely lost my footing.

Deb hit the stop button.  And when we finished laughing, we high-fived our small victory.

The abdominal pain faded for a few days.
I thought I had OUTRUN it.

But it’s back today.  So I breathe deeply.  Forcing air into its very center.  Exploding it with my breath.  

Mom comes over to help me pack and sort my belongings.  (Soon, the house'll be for sale, and I’ll be moving.)

We walk to get an iced chai that I can barely drink.  But we notice beautiful gardens and vintage bikes along our path.

So I can’t run away from my troubles. 

At least for now, I can walk.