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!

Saturday, August 22, 2015

Let's Make A Deal

Mile Marker 3087:

What's behind Door Number 1?

Another leg malfunction!

At Mile 3087, Genium #2 (a.k.a. "The Loaner") stops working.  Maybe it gets a few drops of water in it.  Maybe it's a computer glitch.  Maybe it's just tired of playing second-string.

Gleaners!  Best reason
for a morning workout!
When it happens, my friend Ellyn and I have just finished a pool workout.  We're getting dressed in the locker room, gearing up for an all-important coffee stop on the way home.

As usual, I remove my water leg and reattach my Genium.  But when I stand up, I can't take a step.  The loaner leg LOCKS the knee in a bent position.

It's like Chicago all over again.  Last May, halfway across the country without a prosthetist or spare leg, I was stranded.

But here I have options.  I grab my Allen wrench.  Unscrew the malfunctioning Genium.  Replace it with my water leg, still dripping from the swimming pool.

My swim leg is great for the water, but harder to walk in.  It takes more energy, and the knee will buckle if I'm not careful.  I decide it's worth it to be able to walk out of the gym (and of course, stop for coffee).

That's Deal #1.

I send an S.O.S. to Prosthetist Tim:


When I get to Prosthetic Innovations, he is waiting with open arms.  Did I mention Tim's a really good sport?

I hand him the Loaner which is now vibrating with error signals.  "Take her to surgery," I say.

He opens the knee up.

"It's humid in there," he says.  Then he shows me several tiny beads of liquid on the inner workings.

"I didn't swim in it, I swear!"  I insist.  "It stayed in my locker the whole time!"

It's the truth.

Tim tries to reboot it, but no avail.  He puts it back on me, and I take a few steps.  It bends slowly now, like walking through thick mud.  The vibrations feel like I have a buzzing cell phone in my pocket.

Tim doesn't have any more Geniums to loan me.  And worse, he just received word that my own Genium -- which was due back any day -- won't be repaired for another 2-3 weeks.  Geez.

It's time for some wheeling and dealing.

"Do you have any OTHER legs I could use?"

We move to Door Number 2.  Plan B...

or more precisely, Plan C -- the C-Leg.

Tim goes into the lab and returns with a C-Leg in his hand.  "It was broken, but we had it rebuilt," he says.

February 2011... Time flies!
It's the type of knee I learned to walk on 4 years ago, but a newer version.  It's sleek and copper-colored, rather than silver and space-age like my old one.

"The C-Leg is an inch and a half longer than the Genium,"  Tim says.  "Are you willing to give up your rotator for a while?"

The rotator, in case you're wondering, is a little switch that lets me turn my leg to the side, so I can put on pants or change my shoes without taking the whole leg off.  I love it.  It makes life easier.  But it takes up an extra inch of valuable real estate!

I tell Tim yes, I'd give up the rotator to have a knee that actually works.

Tim aligns the C-Leg on my socket and hooks me up to the computer.  In 5 minutes, I'm walking more smoothly than I have in months.  Functional leg?  Check.  Deal #2 is complete.  It feels like I've won a grand prize!

Then Chase walks in.

You might say he comes through Door Number 3...

Chase is a firefighter and paramedic.  He's also an amputee -- right leg, left arm.  You may remember him from the great "Stairclimbing Showdown" arranged by PT Deb a few years ago.

Today Chase has stopped in to pick up a new liner and -- it turns out -- to claim his old C-Leg, which has just been rebuilt.

Prosthetist Chris goes into the lab to get Chase's leg.  He's gone for quite a while.  He turns the place upside down.  He cannot find Chase's C-Leg anywhere.

Let's Make a Deal  becomes Whose Leg Is It Anyway? 

Through the process of elimination, we discover the answer:  I'm wearing Chase's C-Leg!

"Mind if I borrow it?" I joke.

X3:  the next generation Genium
He really doesn't mind.  He's on an X3 right now, and it seems to be functioning okay, aside from a few strange sounds.  Prosthetist Chris says that's not bad enough to order a loaner -- yet.

Apparently, leg malfunctions are an epidemic this summer.

Before I leave, we make another trade.  Chase has used a few different running legs but never the Ottobock Fitness Knee.  Since my foot isn't healed enough to run, I offer to let Chase try my running leg while I wear his C-Leg.

It's Let's Make a Deal, amputee style!

So what's behind Door Number 3?  

Not exactly a new car, but a NEW LEG!  Well, a rebuilt, slightly used, hand-me-down leg...  But hey, it totally works!


And I got a pretty good deal on it.

Saturday, August 8, 2015

Please Help Us Keep Walking

Mile Marker 3050:

Dear friends, family, blog followers, and readers,

How much are your legs WORTH?

How much would you SELL them for?
How much would you PAY to get them back?

Silly questions, maybe.
But for amputees, they're very real.

As you may or may not have heard, Medicare has proposed new changes in their guidelines that, if implemented, will negatively impact amputees across the country.  This is not just my opinion.  It's echoed by prosthetists, prosthetic companies, physical therapists, rehabilitation hospitals, amputee organizations, and many others.  Everyone's concerned.

Since private insurance companies base their coverage on Medicare standards, the effect would be devastating.  It would impact trauma survivors, cancer patients, veterans, children, and anyone else who has lost a limb.

The new rules would restrict access to prosthetic limbs and modern equipment.  They have the potential to send the prosthetic standard of care back to the 1970's.

That's right -- back to the technology that existed before cell phones, home computers, voicemail, and the internet.

Prosthetics have come a long way since then.


But if these new standards are adopted, modern prosthetic components such as carbon fiber feet, feet with integrated shock absorption or rotation, hydraulic knees, microprocessor knees, and gel liners will NO LONGER BE THE STANDARD OF CARE.

Would you like to go running in your Keds from the 70's?

I don't think so.

As an amputee, I can tell you prosthetics are not a luxury.  They are a necessity and a way of life.

I use EVERY ONE of those modern components EVERY DAY.  I'm not talking about swimming, or climbing, or skating, or running.  I'm talking about WALKING.

Getting around should be a right, not a luxury!

The good news is that these changes are still up for public discussion.  While we live in a country where insurance policies often dictate care, we also live in a country where our voices CAN BE HEARD.

I'm thankful for that.

Please help support me and other amputees by signing this online petition to the White House.  It takes only a few minutes and can be signed by anyone -- whether you use a prosthesis or not.

Thank you!
The petition needs 100,000 signatures by the end of August for the White House to act on and respond to it.   I would sign it a thousand times if I could!

Please consider signing.

Click here to sign the White House petition.

You can also copy and paste the following link into your browser: https://petitions.whitehouse.gov/petition/rescind-medicare-proposal-restricting-access-prosthetic-limbs-and-returning-amputees-1970s-standards-care

So how much would YOU pay for new legs?


Hopefully you'll never have to find out.

Thank you for standing up for amputees nationwide!

Walk on!
--Rebecca

Click here to watch a great video by Prosthetic Innovations. #NotALuxury

Click here for a more detailed summary of the changes and how they'll affect amputees.

Click here to sign the petition.  Thank you!

Saturday, August 1, 2015

Rebuild Her

Mile Marker 3030:

Ever feel the need to rebuild yourself?

Maybe it's that I've ventured out early on a Saturday morning.  Or that I've finally picked up flowers for my balcony.  (Or, more likely, that I've just downed a very strong coffee from Whole Foods!)

Whatever the reason, at Mile 3030, I have an undeniable urge to PUT MYSELF BACK TOGETHER.

If you've been following this blog, you know things have fallen apart.  My cousin recently passed away.  And all other concerns pale in comparison.

Yet somehow, they drone on.  After 6 weeks on crutches, my foot pain morphs into sciatic pain, back pain, and neck pain.  Then the brakes of my car start to squeak.  My air conditioner, toilet, and garbage disposal go haywire.  It seems like I lose a piece of myself every day.

Thankfully, there's a bionic buzz in my ear.

We can rebuild her.

The idea rescues me.  It reminds me of the first words I heard upon waking up in Jefferson Hospital's ICU.  You're going to be bionic.

Never underestimate the power of optimism.  It's saved me before.

Some fixes are easy.   I call my good buddy Jim to schedule a repair for my car.  Then I call the A/C guy and the plumber, and after two visits each, my apartment is healthy again.

Rebuilding my body proves tougher, but I'm up for the challenge.  I am tired of pain.

I locate a healing center that does acupuncture.  I email Vanessa, the trainer at my building's gym, to find out how to use those fancy machines.  I set up a PT eval.  I start eating more protein and drinking green tea.

But the newest idea develops from a pep talk with Chris.  He suggests building strength in the water.  Reluctantly, I join a pool with a short-term membership.  Then I pack up my bathing suit, towel, leg kit, Allen wrench, and "water leg" (formerly known as "climbing leg").

In a gallon-size Ziploc, I seal a list of exercises labeled Rebecca's Pool Recovery Program.


If this choice seems obvious, I need to tell you a secret -- the pool is not my thing.  I won't drown, but I have never liked swimming.  I'm terrible at it.  So to make myself go, I say, This is not swimming, it's exercising!   And in case that doesn't work, I bribe myself.  After 5 workouts, I will buy a cool t-shirt from behind the front desk.  When motivation fails, shopping usually succeeds :)

It does.  I start swimming.

The first session goes smoothly.  The second session, not so much.

Mid-stroke, my socket valve springs a leak.  Water seeps in.  The suction breaks.  The liner peels back.  My little leg is suddenly and shockingly free.

I am flooded with sensation.  My residual limb has never been "undressed" in the pool.  I'm hit with a wave of self-consciousness.  Although other swimmers don't seem to notice, I feel the weight of their eyes.  Knee-deep in PANIC, I lift my heavy prosthesis out of the pool and shimmy on one foot to a chair.

I want to limp into the locker room, but I know myself.  After an incident like this, I might never come back.

So I even out my breathing.  Slow my heart.  Lean the prosthesis against the arm of the chair.  Inch my way back toward the pool.  Legless.

The fear is like an undertow;  the exposure, like skinny dipping.

I go against the current.

We can rebuild her.

The water pokes at my little leg like strange, foreign fingers.  When I try to kick, the imbalance nearly flips me over.

I last only a few minutes, but it's enough to count as a building block.  I'll be back.

The next day my socket fails again -- this time, at the gym.  At least I'm within my comfort zone.

No worries, it's' a loaner!
I'm pedaling the NuStep, a recumbent bike that resembles a Flintstones car, when my Genium tumbles to the ground with a THUD.

Startled gym-goers turn my way.

"Just a leg!"  I say.  "Nothing to see here!"

We all get a laugh.

I am rebuilding.

Maybe it's the endorphin rush of trying new kinds of exercise.  Or the joy that comes from planting flowers on my balcony....

Or, more likely --  that the orthopedic doctor has FINALLY told me I can leave my crutches behind!

Yahoo!!!!

Whatever the reason, I am putting myself back together.  Not at bionic speed.  But it's better than falling apart.

Plus, with two more swim workouts, I'll earn a t-shirt!   (Hey whatever works, right?!)

We can rebuild her.

Sunday, July 19, 2015

Finding Your Brave

Mile Marker 3000:

At the top of the 10-meter platform in the heat of the Arizona sun, I couldn't imagine diving off.

In diving terms, the 10-meter platform is called the TOWER -- higher than a high dive -- and my cousin Brett was the champion of it.

The summer after college, my friend Linda and I drove cross-country in my mom's minivan (without cell phones or Google Maps, of course!).  We stopped to visit my cousin Brett in Tuscon.  Two years younger, he was about to start his junior year as a competitive diver at the University of Arizona.

His winnings at 4 a.m...
He hitched a ride with us to Las Vegas, gambled all night, and then caught an early morning flight to get back in time for diving practice.

That was just Brett being Brett.

Nothing was off limits.  As a kid, Brett specialized in rollercoasters, spinning rides, and a tilting, twisting terror on the Ocean City boardwalk that we called "The Green Ride."

In the yard, Brett launched himself from the tippy-top of swingsets and climbed the skinniest branches of the tallest trees.

Once, visiting our grandparents in Florida, he even jumped off a porch roof!

Tracy, Mark, Brett, and me --
an uncharacteristically tame moment
(probably watching Fantasy Island!)

We were close with our cousins, Brett, Tracy, and Betsy.  We saw each other so much, we were really more like siblings.

What were we wearing??

With Brett around, there were always high jinx.   We made-believe we were runaways, and he was our rich Uncle Charlie.  Or we played jokes on our neighbor, pretending Brett was actually twins; sometimes we called him "Brett" and sometimes "Jimmy."

We watched in awe as he pulled one daredevil act after another.  Always suave and sure of himself.  Always singing a catchy tune.  And always with a mischievous Brett grin just before he leaped.


"It's just Brett being Brett,"  we told each other, rolling our eyes most of the time.

Secretly I admired his bravado.


Carlie's "Flat Stanley"
visited Philly
As we grew, distance divided us.  But we stayed close in a way that faraway cousins could be.  We made phone calls on birthdays.  He reached out when his daughters needed help with school projects.  We saw each other for a sprinkling of family events.




At Mile Marker 610, he called from Arizona for a long distance walk around the block.

But you never know where the journey will lead.


As I reach Mile 3000, Brett slips away.

Lexi's on top,
like father, like daughter!
One minute he's driving to pick up his daughter Lexi at diving practice.  The next, he is at the hospital.

The symptoms, the illness, the surgery.  It all comes on suddenly and takes Brett with it.

Inside a week, there are phone calls and airline tickets.  Voice mails and text messages and photos.  Our family rallies together for an ending that defies courage, and sense, and any kind of justice at all.

It feels like my cousin Brett, who always found his brave at the top of the world, has been thrown off a 10-meter platform into raging waters below.

He faces it the bravest way he can.


Across the country, my life in Philly rolls on.  A fractured foot.  Limited activities.  It seems like the same old stuff.   But I view it from a different vantage point.  I see the smallness of my own discomfort.  Where day-to-day complaints are trivial and temporary.  Life is fleeting.  We're lucky to be here at all.

To mark Mile 3000, I thought I might return to the corner of 5th and Washington.  Park my car next to the bike lane and hobble along the sidewalk on crutches, to the place where my world changed.

But it turns out I don't have to go anywhere.  There's enough loss right here.


In his work as a radio professional, my cousin was known as "BTM" or "Brett The Man."

To his daughters, he was simply "Daddy."

But to me, he will always be remembered as "The Kissing Bandit,"  "Brett Boy,"  rich "Uncle Charlie,"  imaginary twin "Jimmy"...

And of course, "Just Brett being Brett."


Back on that July day in 1991, my friend Linda snapped this photo of the two of us -- Brett and me -- at the top of the tower.  Then Brett turned around and executed a perfect hurdle, a graceful flip, and a rotating descent into the sparkling pool below.


As for me, I took the stairs.

I may never go off the high dive, but I will always think of Brett when I need to find my brave.

xo



Saturday, July 11, 2015

Wheelchair Eyes

Mile Marker 2989:

My friend Anna says she has "Wheelchair Eyes."  She works with people with mobility issues, so when she walks around the city, she always notices potential barriers for people with disabilities.

My own Wheelchair Eyes are still coming into focus.  I have many friends who use wheelchairs, but when I'm out on two legs -- even when one's a prosthetic -- I tend to overlook obstacles.

This summer has brought some new challenges.

Without a strong "sound side," my usual life has been curtailed.  I'm not volunteering at the rehab gym, or rock climbing, or even taking walks anymore.  The stress of finding parking spaces and getting into buildings wears me down.   If I have to stay off my right leg, it's easier to just stay home.

But at Mile Marker 2989, I hear an ad on the radio.  Imagine Dragons is coming to the Wells Fargo Center.

Then a funny thing happens to me.  I dare to IMAGINE.  Instead of lamenting a weekend on the couch, I decide to use my Wheelchair Eyes!

I've seen people using wheelchairs at concerts, so I know it's possible.  But how exactly does it work??

Thanks to Google, it takes less than 10 seconds to find out.  On the Wells Fargo Center website, I locate a phone number for "accessible seating."  I call and leave a voice mail message.  An hour later, a woman calls me back.  By 11 a.m., I've secured seats in Section 204A, sized to fit a manual wheelchair like mine.


When Chris finishes work that day, I surprise him with the tickets.  He's a big fan of Imagine Dragons.   In fact he likes them so much, he's willing to assemble my wheelchair in a torrential rainstorm in the parking lot of the concert!  (Thanks buddy!!)

We make it inside, soaked but excited.  We stop to buy t-shirts.  Then we search for the secret elevator to the mezzanine level.

How do people manage in here
if they can't stand up?
Upstairs, I make a pit-stop at the restroom.  It's the smallest accessible bathroom I've ever seen.  The door barely closes behind my chair, and there's no room to turn the chair around.  My Wheelchair Eyes are on high alert.


When we reach our section, an attendant helps me roll onto a wheelchair lift.  She closes a cage around me like I'm about to ride a roller-coaster.

Chris jogs up the stairs.  I press the buttons on the control panel, and my platform follows him.

I wheel onto a makeshift balcony, bordered with glass and lined with folding chairs.  At the end of the row is one open space, perfectly sized for my wheelchair.

Turns out, we've got the best seats in the house!




Mile Marker 2990:

The next day Jen comes into the city for dinner.

I've told her that I can't leave the house, but going to the concert has sharpened my eyesight.  Now I imagine myself rolling around Old City doing the things I used to do -- just on wheels instead of feet.  We decide to take the wheelchair out for a spin.

But if the Wells Fargo Center was smooth sailing, the sidewalks of Philly are like guiding a sailboat through a typhoon.

First, the sidewalks slant toward the street.  (This makes walking with a prosthetic leg difficult, but pushing a wheelchair is even harder!)   I try to propel the chair on my own, but the slope veers me dangerously toward cars in the street.  The only way to slow down is to run my hands along the wheels.  After 30 feet of sidewalk, my palms are raw and my arm muscles give out.

It feels like this!

Curb cut?  I don't think so.
Jen takes over, but it's not easy for her either.  The sidewalks are gutted with ridges.  They're paved with uneven bricks and cobblestones.  Some intersections don't even have curb cuts.  And the ones that do are so cracked and torn, it's impossible to wheel over them.

We run into construction zones and tree roots and pathways too narrow to accommodate even my small wheelchair.  We make a bunch of U-turns.

Our Wheelchair Eyes (and arms) get quite a workout!




You want us to roll through WHAT??

After struggling for 3 blocks, we end up at Pizzicato.  There are so many barriers along Market Street, we can't get to any other restaurants.

Then we want dessert, of course.  There are a half dozen ice cream places within our one-block radius.  Do we dare?  We've got to be able to get to reach one of them, right?

Fueled with pizza, we put our Wheelchair Eyes to the test.

Jen starts pushing again.

By process of elimination (a.k.a. nasty sidewalks and detours), we end up at Capofitto, an Italian gelato place on Chestnut Street.

At the door, a 10-inch step blocks our way.  After the rough ride, it feels like a slap in the face.

"Go in and ask for a flavor list,"  I say to Jen.  "Tell them your friend is in a wheelchair and can't get inside."

Jen pulls the door open, geared up for a fight.

But a minute or two later, she emerges from a different doorway.  With her is the guy from the ice cream counter.  They're both smiling.

"Here you go," he says cordially, pushing open the heavy double doors.

Not the standard entrance,
but it works just fine!
I steer into an apartment building mailroom.  Jen pushes me up a ramp to a hidden side door.  The ice cream guy unlocks it.

And I roll right into the restaurant.

A rainbow of gelato awaits.

It's worth the trip!

Thanks Capofitto!  (And Jen!)

I'm not telling these stories to emphasize the trouble I've faced over the last few weeks.  After all, when my leg heals, I'll be walking again.  Many barriers, for me, will disappear.

But for people who use wheelchairs everyday, they WON'T.

Imagine that.  Put on your Wheelchair Eyes for a second.

Ever wonder what "accessibility" really means?

The more I look around, the more I realize that accessible doesn't mean ideal.   It doesn't necessarily make people feel able or comfortable.  It doesn't ensure that they can take same path as their "non-challenged" friends.  It simply means that -- with a little push -- a doorway might be wide enough.

On a website called Unlock Philly, I find an article that describes the obstacles wheelchairs face in Philly's Old City neighborhood.  As of last summer, only 9 of 72 storefronts had accessible entrances.  That's less than 13 percent!  And at Mile 2990, I see that not much has changed since then.

People say historic buildings are exempt from accessibility changes,  Don't believe it.  There is no "grandfather clause" in the Americans with Disabilities Act (ADA).  ALL businesses are required to be accessible.  Hear that, Old City?!

Imagine a world where accessibility means equal access.  Where you can roll your chair, or walk on crutches, into any restaurant or store.  Where the roads and sidewalks are smoothly paved.  Where you don't have to plan ahead, or use a separate entrance, or bring an assistant to help you along.

Kudos to businesses that have found ways to make it work.

But to really get it right, this city needs more than Wheelchair Eyes.

It needs a Wheelchair Heart too.