Amputee Coalition Conference 2016

Mile Marker 4070:

After an 8 hour drive, my mom and I pull into a hotel driveway in Greensboro, North Carolina.

The doorman comes out to help us with our bags.  He opens the hatchback while I reach into the backseat.

"I have to get my other legs,"  I tell him.  Then I laugh.  "Bet you don't hear that too often!"

"Nope."  He smiles.  "Except this week!"

A THOUSAND AMPUTEES...

Think about it.  When you're used to standing out in a crowd, and then suddenly you're surrounded by people who look like you...  Well, it's NORMALIZING.  That's what happens at the Amputee Coalition Conference.

The hotel is filled with amputees.   We're in the lobby, the restaurant, the meeting rooms.  In the "outside" world, we seem uncommon, but here we blend right in -- more or less anyway!

We're different, yet we share that uniqueness.  The opening speaker sums it up like this:  We're living with a body that's different from the one we were issued. 

Conversations spark everywhere.  We know what it's like to be us.  We get it.  In a mere 3 days, I meet friends I know I'll be in touch with for a very long time!

A spontaneous dinner turns into a storytelling extravaganza.  Every devastating mishap -- every leg or arm malfunction -- becomes fodder for laughs.  Each story is funnier than the last.

And you should see the AmpuTeez!

There are clinics on walking, running, swimming, rock climbing, resistance bands, yoga, dance, cross fit, and hula hooping.  Maybe even more.

It's been a year since I've tried my running blade, but at the running clinic I give it a whirl.  Miraculously, the socket fits!  Picture a huge ballroom with more than 100 amputee runners.  We leap.  We land.  We high-five.  We somehow get from one side of the room to the other.  Confidence builds.  Gait belts come off.  There's safety -- and empowerment -- in numbers!

It spreads.  In the hotel lobby one evening, I discover a group of hula hoopers.  "Try it!" my friend Kelly says.  Before I can refuse, she thrusts a hoop in my direction.

Go Kelly!

I hesitate.  "I don't try new things in front of an audience,"  I say.  But Kelly insists.  So I step into the circle, position my feet as she shows me, and start hooping.  It works!  (Turns out, foot placement is key!)

One uncomfortable morning, I limp down to the café.  The man in front of me uses two prosthetic arms to pay for his coffee.   He puts his money back in his wallet.  Carries his breakfast to the table.  He does it all matter-of-factly, like it's no big deal.  But it is a big deal.  All at once I realize... my "bad leg day" is really just another day.

I discover my avatar too!

I learn a lot at this conference.  I learn about osseointegration and new technology.  I participate in research studies on balance, eye movement, and step counters.  I even shop for a new foot to put on my wish list!

But the most memorable lessons are the ones I learn, by example, from other amputees.  Each one of us has a story.  Something happened.  Something went wrong.  That's how we ended up here.

That story -- and its losses -- will always be part of who we are.  But it doesn't have to define us.


It can't.  We've got too much living to do.




See for yourself!  Click here for a video.


Photos "stolen" from Kelly, Angela, Kristan, Carin, Sandra, Molly, Danika, Doug, Robin, Mabio, OPAF, AC, Ottobock, Ossur, and College Park.   Thanks everybody!!

Hope to see you all next year in Louisville!

Wish Wall

Mile Marker 4030:

I wish I could tell you I swim for exercise in the morning.

But really it's for the coffee.

I park along 9th Street.  My hair's still damp as the sun rises over the Italian Market.  In tiny Gleaner's Cafe, wedged between market stalls, I order a "small hot."  The coffee is rich, like dark cocoa.  At this time of day, it's pretty much all I could wish for.

I head back to the car to go home and start my day.   But as I start up the engine, colors catch the corner of my eye.

It's a collage of flyers, overlapped like a paper mosaic.

If I squint, I can read the title:

WISH WALL

It's still early.  I have a minute or two.  I hop back out, coffee in hand.

Step closer.

Some have been smeared with rain, but most are legible.  They're people's wishes, penned on pastel index cards for posterity.

Click any photo
to enlarge and read...

I stand.  I sip.  I read.  I've never been much for meditation, but on this quiet morning, that's what it feels like.  I breathe in the wishes.  My eyes wander the board.

There are wishes for health, for family, and for forgiveness.  For small things like toys, and for big things like cures for cancer.

A handful are written in Spanish.  A few are crayoned by kids.

There are milestones celebrated.  Goals to be achieved.

And in many different words and ways, an overarching wish for PEACE.

It's like a thousand voices from this neighborhood mingled together under a sheet of Plexiglas.

Fascinating.  Especially to a wisher like me.

Is this real?  And how long has it been here?

I look around.  The lot is mostly deserted.  A few people walk by on their way to work -- earbuds in, eyes on their phones -- some sipping coffee like me.  I'm the only one looking at the Wish Wall.

I wonder if these neighbors realize how much they have in common?

Hope.  Intention.  Strength.  Life.  Community.  So much meaning in so little square footage.

Then I start thinking... maybe a wish is just the beginning.

What if we all had the courage to put our dreams out there?  If instead of building walls to keep people out, we built more walls like this one?

What if EVERY neighborhood had a Wish Wall? 

The ideas flow quickly, one into the next, spurred on by caffeine.  My coffee cup is half-empty.  Or wait -- maybe it's half-full!

Go ahead.  Make a wish.

Get it out there.

You never know who might find it.


Where'd this wall come from?  I did a bit of research! Click here for the story behind it.   For more information about the WISHWALL Foundation, click here.  

Farm to Table

Mile Marker 4007:

If you're going to cook a mushroom, take my advice.  Don't name it.  No matter how cute it is.

It's opening day at the Old City Farmer's Market!

I run into Donna on my way.  She already stopped there, but she does an about-face to walk back with me.  She texts Mike to come along too.  What great walking buddies I have!

The market is small today -- only 6 stands -- but it's bustling.  The whole neighborhood is excited it's back in town.  If the Farmer's Market is here, summer can't be far behind.

Our first stop is a table full of mushrooms.  That's where I find this beauty...

(...along with Mike, the Photobomber!)

It's a mushroom as big as a cauliflower.  And it sits in my hand like a furry white hedgehog.  The farmer at the table calls it a Pom-Pom.

I'm in love.  How have I never seen these before?

"We're not here in the summer," the farmer says.  "The mushrooms don't like the heat."

Ah, I get it.  Mushroom weather and prosthetic weather are one and the same.  Today's cloudy and cool, ideal for both of us.  I knew we were kindred spirits!

I run my finger along the mushroom's ridged surface.  What looks like fur doesn't feel furry at all.  It feels like a mushroom -- but a mushroom that's been sculpted into Donald Trump's hairstyle.  (Only much, much cuter!)

I ask how to cook it.

"Pull it apart gently," the farmer says.  "Sauté it in oil."  He says it'll take on the flavor of whatever I add.

"I'm getting a pet mushroom!"  I tell Donna and Mike.

"Don't name it," Mike says.

We walk home with my treasure in a paper bag.  Unnamed.

I wasn't planning to cook a real dinner tonight.  It's already 6:15, and my socket is rubbing.  But now I've got this mushroom.  And I'm curious.

Plus, I'm energized by the Farmer's Market.  I head out to the balcony, where baby greens are ready to be picked!

I used to have a big garden at my house in South Philly, but after my accident, it became too much to handle.  I've downsized to a tiny balcony.  It has more potential than you'd think.

In just two flower boxes, this year's crops are growing strong:  rosemary, lavender, baby greens, sweet basil, and (hopefully) tomatoes!


Back in the kitchen, the greens go into a salad.  Frozen pesto goes into the microwave.  And that very cute mushroom goes into a cast iron sauté pan.

When I tug it gently, it pulls apart like the cottony tufts of a Dr. Seuss tree.

I stir in coconut oil, lemon verbena, and lemon thyme.  The mushroom gets toasty.  In minutes, it turns a color somewhere between pan-seared scallops and breakfast potatoes.

Now that's Farm to Table!

By now, you're probably wondering what the point of this cooking lesson is.

Usually I learn something new with each mile marker.  Come out with some greater understanding of the world, or myself, or life in general.

Mushroom Shwag!!

So what's the takeaway from Mile 4,007?   I'm not sure...

Try new things?
Appreciate the small?
Find beauty in nature?
Shop local?

Go ahead.  Help yourself.  Take whatever appeals to you.

That cute (and very delicious!) mushroom appealed to me.


Love mushrooms?  Mycopolitan Mushroom Company is a mushroom farm located in a Philadelphia basement!  Check out their website for more info!

Thoughts at 4000

Mile Marker 4000:

My contact lenses are dry.  The lights in the Healing Garden need new batteries.  I could really use an iced green tea...

These are my thoughts -- in no particular order -- on the day I hit Mile 4000.

It's a beautifully uneventful day.  The rain has stopped.  There's a gusty breeze.  The sky is bright blue and the air smells leafy green.

I LOVE NORMAL.

I woke up this morning thinking of a post I wrote way back in the beginning.  Mile Marker 28:  The Usual.   It's about how trauma has its own landscape, and how the ordinary world somehow keeps turning while we're away.

I've found my way back, but I still marvel at the "normal" stuff I used to do.  Now when I make dinner and wash the dishes, my foot aches.  My socket rubs after a workday.  Mail piles up on the table.  The floor gathers crumbs.  I've never been so exhausted.  Yet I can't deny it.  I'm super happy to be here.

This morning, I take my usual walk for coffee.  Drink it on the balcony.  Then I meet with a colleague.  Go to a doctor's appointment.  Tend to the Healing Garden at Jefferson.  On Walnut Street, I sweat out of my socket mid-stride and discover that Peet's Coffee has a spiffy bathroom.   Just a typical day in amputee-land.

When I get home, I'm at Mile 3999.69.  So close!

Leg freshly fastened, I decide to walk around the block.  No fanfare.  Nothing fancy.  I just feel fortunate to make the trip.

I head south toward Market Street, over the bricks and cobblestones, dodging construction zones and crumbling curbs.

Artwork pops up unexpectedly.



Along with Philly-style inspiration...

Yo Adrienne!

Trucks rumble past.  Cars make turns.  From somewhere distant, I hear rap music.  And beyond that, birds.

My feet keep moving and my mind does too.  I've got a shopping list a mile long for CVS.  Up the street, there's a baby gift I need to get.  And across from that, there's a store where I want to order new glasses frames.

It's Mile 4000.  But it's also just a Monday.

No errands today.  I stay focused on each step.  Walking is a privilege, and this lap deserves attention all its own.

These feet have walked 4000 miles!

It's hard to believe how fast it's gone.  My first thousand miles took nearly two years to complete.  This last thousand took only 10 months!

As I round the last corner toward home, I run into my neighbor Faye.  Faye is 81 years old.  She wants me to take her rock climbing.

Welcome to my world.

Here's to normal.
And here's to everything that lies outside of it.

In other words...
Here's to the next thousand!

Hero

Mile Marker 3974:

Backtrack with me 700 miles or so....

One morning last fall, I packed my rollerblades, hockey stick, and pads into the car.  My whole body was jittery with excitement as I drove to the therapy gym.

I was going to skate with Brian Propp!

WHAT?!?!

If you don't know what a big deal that is, you haven't been a Flyers fan as long as I have.

I wanted to shout it to everyone I knew, but I couldn't.

As a hospital, Magee takes patient privacy very seriously.  So there was no camera.  No blog post.  Just two Magee therapists and two Magee patients -- Brian Propp and me -- lacing up our skates and passing the puck around in the basement parking garage (a.k.a. "the skating rink").

No, it wasn't the Spectrum ice.  It was much cooler!

I started going to Flyers games as an infant in my dad's arms.  Growing up, my brothers and I dressed as Flyers players for Halloween.  And for my Sweet Sixteen, I got a real Flyers jersey.

Brian Propp played left wing on the Flyers for 11 seasons.  I watched him from the time I was in elementary school until I went to college.  To a teenage Flyers fan like me, Brian and his teammates always seemed larger than life.

That day we skated in the Magee parking garage was not really the first time we met...

This was the first time!

In his career as a pro athlete, Brian Propp had visited patients at Magee many times.  But last summer, when he suffered a stroke, Brian became a patient himself.  He couldn't move the right side of his body.  He couldn't stand up.  And he couldn't speak more than 3 words.

(And our therapists were
creative to get us there!)

Our situations were much different, but as Magee patients, Brian and I had one thing in common.  We had to relearn to walk before we could ever try to skate!

I admit it.  When I heard Brian Propp was a patient at Magee, I was pretty star-struck.  (Ok, I still am!)   But here's the truth:

Illness and injury can strike anyone.  Even our greatest heroes.

It comes out of nowhere.  It knocks you down when you least expect it.  It levels the playing field, or the skating rink -- OR LIFE -- in ways you never, ever could have imagined.

Fast forward to Mile 3,974.  It's my second year attending Magee's Night of Champions.  At last year's event, I was honored to receive the Believe Award.  This year, I have a different honor.  I'm presenting that award to Brian Propp!

Like most Magee patients, Brian struggled to get his life back.  And in many ways, I understand how that feels.  But is it different when you're in the public eye?  When patients recognize you?  When they're star-struck?  When they're looking to you to continue to be their hero?

Some days, I watched Brian from my mat in the therapy gym.  He was determined, motivated, and persistent.  I'm sure he worked as hard in therapy as he ever played on the ice.  But he also took time to engage with other patients.  (One man with a Flyers tattoo told me proudly how he'd gotten a photo with Brian Propp!)  During Brian's own rehab, he reached out and gave back.

Magee's slogan is BELIEVE, and that's what we learn to do.  We learn it from our therapists, from our doctors and nurses, and from our families and friends.  They all help us find our way back.  But the most powerful support is what we, as patients, give to other.  That's the stuff of heroes.

Surrounded by Brian's therapy team, I pass him the award.  Hand to hand.  Patient to patient.  Flyers fan to Flyer.

I'm still in awe.  And now, more than ever, I BELIEVE.

Be Like Mike

Mile Marker 3800:

Back in February, on Superbowl Sunday, my mom and I attended a show at the Walnut Street Theater.

Who would see a show on Superbowl Sunday, right?

Wrong.  The theater was packed!

Ok, it was a small theater.  Maybe 6 rows front to back, arranged in a horseshoe shape around a floor-level stage.

On that stage sat a wooden shack.  And attached to that shack was a front porch.  And off that front porch ran a set of rickety stairs.

On those stairs was Michael.

He lumbered down them.  Paced back and forth across the stage.  Plopped himself down to sit on the edge of the porch.

I watched his every move.

Ten minutes into the play, I realized I was holding my breath.

Michael was a brand new amputee.

If you're from Philly, you may have heard of actor Michael Toner.  Last summer he was seriously injured in a hit-and-run on his way home from a rehearsal.  Coincidentally (and fortunately!) he was delivered into the hands of the very same trauma team that saved my life.

Click HERE for a great article!

When his show, Moon for the Misbegotten, opened just months later, Michael returned to the stage to play the part for which he'd been cast before his injury -- Irish farmer Phil Hogan.

He was perfect for it.

But I know a few things about being a new amputee.  (And if you've been following this blog, you probably know them too!)

To put it simply:

1.  Walking with a prosthesis takes balance, planning, practice, strength, courage, and a thousand other things.

2. When you're walking, it's nearly impossible to do anything else!

On his brand new leg, Michael not only walked.  He walked on stage!  He ACTED.  He dodged props.  He climbed rickety steps.  He hugged and slapped other characters.  He poured whiskey!

And he somehow made it all look completely natural!

After the show, my mom and I hovered in the lobby.  Introduced by email a few months before, I couldn't wait to meet Michael in person!

But before I could even congratulate him, he complimented my walking.  "Look at her!" he said to his friends.  "You can't even tell!"

"Are you kidding?"  I answered.  "You walk ON A STAGE!  I'm 5 years ahead of you, and I still avoid walking in front of an audience!"

He smiled with his whole being.  That's Michael's way.

With Michael and his friend,
another "Jefferson patient-alum," Martha!

Michael told me how his PTs helped him face those obstacles on the stage.  How they decided to lock his prosethetic knee for stability.  He wouldn't be able to bend his leg, but he'd be safer.  And luckily, the limp made it more authentic.  In the 1920's, prosthetics were basically wooden legs anyway!

As they say, the show must go on! 

It's taken me a while to write this blog post.  Somewhere in mid-February, my own show slowed to a crawl.  Let's just say I'm still getting used to how much all-consuming ENERGY it takes to be an amputee.

I wanted to get this post up finally.   Because on my most exhausting days, Michael is the one who comes to mind.

Despite his arduous journey, Michael never lost sight of the theater and his own writing projects.  From our emails, I learned how taxing it was, performing for 3 hours nearly every night, sometimes in 2 shows per day.  All of this while struggling with the same issues as anyone who learns to walk on a prosthesis, or attempts to regain their new normal after a life-changing spill.

But I could also sense his excitement and enthusiasm.

Michael EMBRACES life.  He leans into it with all the MIGHT of a hearty Irish farmer.  With every step, he clings PASSIONATELY to the work he loves.

When the road gets rough, inspiration comes in handy.  And I'll share my newest one with you.

BE LIKE MIKE.

(Ok, maybe living in Chicago Bulls territory back in the '90's had its influence too!)

Give it a try...

What do you love? 
What kind of happiness renews your strength? 
What one thing -- however small -- makes getting out of bed worthwhile?

Whatever it is, don't let go of it.
Through hardship, rediscover your JOY.

Superbowl Sunday was 6 weeks ago.  And I should tell you that between then and now, Michael and the cast completed a month-long road tour.  (Yes, he travels too!)

I'm looking forward to details now that Michael's back in town.  But in the end, I'm pretty sure it'll all come down to that determined smile of his...

The show must go on -- the road!


(Thanks to Philly.com and the Walnut Street Theater for the show photos!)