Ankle-Blades and the Stone Sandal

Mile Marker 406:

When my good friend Marla called on Tuesday, I should've let my phantoms answer the phone.

“Rebecca’s not here right now,” they would have said, “but her Ankle-Blades are.  She’ll call you back tomorrow when she’s wearing her Stone Sandal.”

What??

I know you're thinking, This is it.  She's finally cracked!

My body disagrees.

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Marla and I have been friends for almost 30 years.  When she calls from Nashville, I love to talk.

But as we caught up on the latest news, my end of the conversation faltered.  I paced the kitchen impatiently, phone pressed to my ear.

As the minutes passed,  my focus fell apart.

Blame the Ankle-Blades.

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From what I've learned, I'm not ALONE.

Most amputees get phantom sensations.

Lightning bolts, burning, tingling, clenching, numbness.  Some are painful.  Some are not.  I've experienced many over the past year and a half.

But those are not my USUAL phantoms.

I call mine Ankle-Blades and the Stone Sandal.

How can I explain the sharpness of invisible razor blades stabbing my ankle from all sides?  Especially when I don’t even HAVE an ankle!

On my prosthesis, I can show you the exact spot.  Just above the foot, along the metal tube that connects to my Genium.

In my socket, Ankle-Blades magnify the suction.  They tug my leg downward, milking it like a cow.

Sometimes the pinch is a sharp, quick squirrel-bite.   Other times it's slow, and hot, and burning.

Like many amputees, I take medicine.  I use imagery and massage.  I open the windows and wear shorts like it's summer.

But Ankle-Blades aren’t just physical.   

They fill my head with static.  Not the kind that breaks into neat little cubes on your digital TV screen.  I'm talking about that old antenna static.  The kind made of gray snow and white noise.

On an Ankle-Blades day, concentration is scarce and comes only in short bursts.  As the day wears away, so does my tolerance and comfort.

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Phone conversations -- even with best friends -- are wrapped up as quickly as possible.
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But there is RELIEF.  A moment when the pain dulls and the fog clears.

I call it the Stone Sandal.

The Stone Sandal is Ankle-Blades’ alter ego.

It’s a sensation like wearing a flip-flop made of cement.  Or a tightly-laced hiking boot.  Or a clunky, rock-hard Mary Jane.

It’s heavy and secure.  Soothing and stable.

In the Stone Sandal, my leg (and invisible foot) feel quiet.  Held securely in place just where they need to be. 

On Stone Sandal days, I see the potential of my new life.  Places I want to visit.  Things I want to do.   My thoughts are clear, and I begin to feel like myself again.

With the Stone Sandal on, I could talk to Marla for hours.  I'm even tempted to buy an airline ticket to visit her!

I'd travel back in time to live with The Flintstones if it meant I could wear a Stone Sandal everyday.  (That is, if their cars didn’t run on foot power!)

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Phantom sensations are like nerve impulses from the PAST.

Some say they’re signals leftover from the injury; the nerves continue to send painful messages even though the moment of impact has long expired.  

Others say they're just overactive nerves that've been folded or cut during an amputation.

But why do they go on and on?

A physical therapist explained it to me this way:

When we burn our finger on a hot stove, our mind says, “Move away!”   Our hand moves, and it relieves the pain.

When I feel Ankle-Blades, my mind says to move away.  But I can’t.  My ankle no longer exists. 

So the nerves keep sending the message.  Over and over and over.

Heavy stuff, I know.

About as heavy as a Stone Sandal. 

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On the angriest Ankle-Blade days, I ice my leg with a bag of frozen peas.

“I know you remember that pain,” I tell it.

But if Ankle-Blades remember the injury, then the Stone Sandal remembers the cure.  

The stability of the splint.  The tightness of the tourniquet.  The RELIEF of rescue.
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In the weeks following my amputation, the doctors performed 8 additional surgeries on my leg.

Each time, the nerves inside got shuffled.   When I woke up, my leg felt different.  Sometimes it felt like my toes were squashed under my knee.  Sometimes my ankle felt twisted beneath my thigh.  Each sensation was uncomfortable in its own right.  Until the next surgery. 

Until the phantoms changed again.

Finally, mine have settled into a rhythm.  Ankle-Blades and the Stone Sandal.

Two sides of the same coin.  Every other day.  Almost like clockwork.

Now, at Mile Marker 406, I worry about LOSING them.

I'm not crazy about my phantoms, but at least they're familiar.

With surgery next Monday, I don’t know who’s coming to visit.

What if a meaner sensation moves in?  One that wakes me at night, or radiates electric jolts, or feels like my leg will explode.  I’ve heard some awful stories.

Or what if – THEY LEAVE?

It may sound strange, but I don't want my phantoms to disappear.  They’re MEMORIES after all.

They're all that's left of my leg.

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So, where does that leave my phone call with Marla?

We hung up, at last, when Ankle-Blades had me so agitated I could barely form a sentence. 

The rest of our chat will have to wait.

Till a Stone Sandal day.

I wonder... do they have phones in Bedrock?

Stolen Goods

Mile Marker 400:

On the eve of Mile 400, I was fried.

I stood between the parallel bars at Prosthetic Innovations for the 10th time this month.  Tim listened patiently -- yet again -- as I described the poking and jabbing.  The sticking and tugging and burning. 

Then he carried my socket back into the workshop.

When he returned, he asked me a question.

 “Feel like you’re ready to jam?”

JAM??   I thought.   It's been 6 months since I've walked comfortably.  I've got surgery scheduled for next week.  At this point, I’d be happy just to sit down!

Somewhere in the 300’s, this trip stopped being new and shiny and full of wonder.

Last April when I started prosthetic training, I'd wake up EXCITED each morning.

For hours, I practiced walking across my parents' kitchen.  Tracing the same path over and over again, step by step, my hand brushing along the counter top for balance.  

Now the mornings are different.  I’m tired.  When the alarm sounds, I hit the button and go back to sleep.  I think how much easier it would be to stay in bed.

The novelty of this journey is wearing off.  Each day, it becomes more REAL.  Its forever-ness weighs me down.

Somewhere in the 300's, this journey became… my life.


So I've resorted to stealing.

I'm running low on energy, but I've discovered an unlimited supply.

I spent a spontaneous half-mile with nurses (and friends!) Elly, Julie, Doris, and Deb.  But along the way, I stole their confidence and courage.  Their memories of where I was a year ago and how far I've come.

I met up with Dad and Uncle Steve at the Oregon Diner.  Over thick pea soup, I stole their easy laughter, their warmth, and their comfort.  Then they headed to the Flyers Game, and I went home to take off my leg.  But I got what I needed.

And from my workout buddy Sylvia and our awesome PT Deb,  I stole knowledge, inspiration, and problem-solving.  Their strength to keep on pluggin'.

I used to be a member of a different team:  National Skate Patrol.   Three times a week, we organized routes for masses of skaters.  We helped keep skating safe and fun within the cluttered traffic of Philly streets.

As you might guess, I had the shortest legs.  When the group took off, I chased and scrambled with all my might!  I hated to lag behind!

White helmet, middle row...

Of course what I lacked in size and speed, I made up for in volume.  When you spend your days controlling a class of middle schoolers, your vocal muscles grow big and strong.

“Clear!” I yelled, or "Car up!" or “Left lane!  Skate left!”

If the approaching skaters didn’t SEE me in the distance, they sure HEARD me!

One Christmas, our Skate Patrol leader Rick mailed me a photo card with a snapshot from that year's Freedom Skate event.  But what I remember most was the handwritten message he attached on a yellow post-it note:

Rebecca – You are a skater who I steal energy from….

I don’t remember the rest, but those words stuck with me all this time.

Especially lately, when it seems all I do is ABSORB, ABSORB, ABSORB.

I soak up the light and power of my new team.  

Their words echo constantly in my head, too:

Smile and keep walking, one step at a time.

Puzzle it out.

Use those muscles.

Breathe!

I steal their energy.  And it becomes mine.

The Mile 400 moment
with my friend Karen!

At Mile Marker 400, my team stepped in as usual.  To do at least 400 things that I just couldn’t do for myself.

But most of all, to remind me that there's always energy for the taking.

With their encouragement, I suddenly felt strong again.  Reinforced.  Renewed.  I somehow found my second wind.

“So," Tim asked.  "Feel like you’re ready to jam?”

I must have shot him a quizzical look because before I could answer, he did.

“I think you are!" he said.  "As soon as we get this socket stuff worked out, I think you’re ready to JAM!”

Well, you can probably guess what I did with his comment.  

I stole that, too.


Mile 400 is for my friend and fellow skate patroller Steve, who always had energy and light to spare.
 And to Karen, who's got lots of her own.

Standing Room Only

Mile Marker 396:

There are days when I will do anything for ice cream.  

Then there are days when I can’t DO ANYTHING.

Today is one of those days.

It began yesterday, but not really.  This struggle's been going on a long, long time.  

About 16 months, I guess.

Yesterday itself wasn’t even that bad.  I mean as far as work days go.    We got two evaluations done, scooped some great gelato for Elvira’s birthday, and arranged services for one of our neediest students.   Productive, really.

But the thing is, I STOOD.

I mean I didn't sit down.  For the whole day.

I perched my laptop on three thick binders so I could reach the keyboard from a standing position.  I hovered over Chase's shoulder so we could collaborate on the wording of a report.  I walked outside to pick up lunch three blocks away.

Prosthetically speaking, it was STANDING ROOM ONLY.

Because each time I tried to SIT, I got a burning, tugging, jabbing pain just below my aptly named "sitz" bone --    that's ischium tuberosity, if you want to get specific.   

Those first few seconds of sitting were bearable.  But then I found myself inching toward the edge of the chair.  Leaning toward my right side.  Skimming the same paragraph on my computer screen over and over again.  Typing in a sentence that made no sense.

Yes, that's Shred!

Each sound in the room distracted me.  The singing from the kindergarten across the hall.  The paper-munching from our ancient shredder we call “Shred.”   

Each time the office phone rang, I jumped up (figuratively, of course) to answer it.

I lost my place twenty times.  Ran errands around the school.  Stopped to check my mailbox in the lobby.

As long as I stood, I avoided that discomfort.  

But unfortunately, even in the high-tech world of prosthetics, the laws of physics apply.  For every action there's an equal and opposite reaction.

By late afternoon, all that standing took its toll.  My right knee and ankle ached with pressure.  The high inner edge of the socket dug into my bikini line.

After an uncomfortable car ride home, I collapsed onto my bed.  I released the suction valve and gently peeled the socket shell away from my burning skin.

Then I burst into tears.

It's not that I saw something horrible.  The raw skin wasn’t any worse than usual.  There was a thin white line created by a new pinch.  And those red bumps I've gotten used to had grown just a bit little bigger.

But at that moment, all the seats were taken.   The feelings had no place to go.

My inner stadium had reached full capacity. 

It was STANDING ROOM ONLY.

Two weeks ago, my dad took a photo of a billboard he and my mom passed on their way to Vermont for my niece Riley’s second birthday.  I couldn’t make the drive that weekend.  If sitting in the car for the 20-minute ride home from work is bad, can you imagine 8 hours?

But if I had been there, this sign would've caught my eye, too.

If you take a close look, it's linked to a website.  I now subscribe, so it sends uplifting “quotes of the day” to my e-mail inbox each morning.  

A few mornings ago, this one from George S. Patton arrived:

Success is how high you bounce when you hit bottom.

I know I’m not at the bottom.  Already, I’ve seen many lower places on this journey.  And I've met friends who've been even lower.

But still, it rang true.

More surgery lies ahead.  More weeks on crutches.  More uncertainty about the future.

Last night, even another day in my prosthesis seemed like too much.

Shortly after my meltdown, the phone rang.   Mom.  (She has a sixth sense, I think...)

“I don’t want to WEAR this anymore,” I told her.  “I don’t want to do any of this.”

I'm sure I sounded like a cranky four-year-old, but she listened, encouraged, and of course reminded me we’re in this together. 

We are.  I have the most supportive family that anyone could ask for.

Between them and the guy on the billboard, I know I haven't completely lost HEART.  

I want my life back.  And I'm willing to work for it.  

But sometimes the stadium just gets too full.

So today I'm resting.  

My little leg is wrapped tightly in its shrinker.  My Genium is plugged in, charging up for another day.  

Like I am, I guess.

I've cancelled out the rest of the week to let these latest wounds heal.

To let the stadium empty a bit.  

To find a place to SIT DOWN.

Will Walk for Ice Cream

Mile Marker 380:

What will I do for ice cream?

On a beautiful night like this, a better question is What won't I do? 

Well, I won’t ride spinning rides at the amusement park.

I won’t go skydiving, no matter how handsome the instructor.

And I won’t bungee jump from a bridge, even if the cord’s attached to my REAL ankle!  

That’s about all I can think of at the moment.

Gotta love Daylight Saving Time.  How wonderful to arrive home after a long day to find… more day!

Usually by 6 p.m., weariness is the rule.  But this past Tuesday, I was determined.  Fueled by an unusually comfortable day in my prosthesis.  Powered up by an amputee support group meeting.  

Energized by the liquid light in the sky. 

Since the accident 16 months ago, I can count the number of nights like this on one hand.

Perhaps I am breaking in this new socket,  I think.  Perhaps I’m breaking in this whole new routine.

But thoughts like this will jinx me.  I’ve learned how life can change in a second.

So instead I decide to go for a walk.   A long one,  I tell myself.

  

I need the miles.

Then my stomach growls.  I’m in the habit of eating dinner early so I can retire upstairs to take off my leg.  But if I don’t walk soon, I’ll lose my nerve and the sunlight.

ICE CREAM... The answer.

As if I needed any more arm-twisting, my phone rings.  

My friend Jen tells me her car broke down.  “It’s leaking gas,” she says.  “The smell’s so strong, I don't want to start the engine.” 

Jim -- her boyfriend, my good friend, and our mutual favorite mechanic -- is on his way to rescue her.

On this perfect night, her car is stuck at the corner of 3^rd and Bainbridge.

One block south of Haagen-Dazs.

The universe is smiling.

The walk is on.

I know I’ve complained a lot about my new socket.  But for all its trouble, it really HELPS my gait.  It rides up higher on my leg, cradles my adductor muscle, and attaches more firmly than any of the old ones.  Maybe it’s an illusion, but my steps this evening feel lighter and smoother.

I find myself almost POWER WALKING.

(Perhaps it’s the promise of ice cream rather than the new socket, but hey, whatever works!)

As I walk, Jen and I chat on the phone.   The streets pass quickly as she tells me about her day.   

Her first stop was the dentist, where she found out she needs a root canal.

Her next stop was the vet.

In the background, I hear a loud meow that can only be Jen's cat, Finster.  Apparently Fin doesn’t like the smell of gasoline either.

It is one of those rare moments when I feel LUCKY to be loping along in my prosthesis.

Through Queen Village, I step.   Up and down curbs.  Over bricks.  Past cherry blossoms that are just beginning to flower.

For me, I’m moving quickly.  But I’m passed by athletes in sweaty tee-shirts, office-workers in creased khakis, and pug dogs with bulgy black eyes.

I don’t mind.  I’m on a mission.

When I reach Bainbridge Street, Jim has arrived.
Perfect timing.

I hit Haagen-Dazs while they work on the car.**

So, what WILL I do for ice cream?

I’ll take step after step under a sky with lavender clouds.
I’ll catch up with a good friend on the phone.
I’ll walk almost a mile on a school night.

Even if the sidewalk is bumpy.  Even if short-legged dogs are faster.  Even if the Haagen-Dazs server is in a bad mood.   (She is.) 

Mile 380 is SWEET anyway.

I catch up with Jim and Jen just in time to snag a ride home.

Jim’s got a long night of car repairs ahead.  Jen’s got a root canal.

I got ice cream.

Just lucky I guess.

(**By the way, I did offer to bring J&J some take-out!)

Breaking It In

Mile Marker 369:

Do you make New Year’s Resolutions?

I do. 

Oh, I don’t usually bother making them in January.  At that time they’re overpopulated (and kinda overrated) anyway.

Instead, mine creep in with the early morning hours.  With my cheek to the pillow, my sleepy mind dreams up socket solutions, exercise routines, ways to truly RUN. 

Before the day begins, anything seems possible. 

By the time I stretch my muscles and climb out of bed, I am RESOLVED to have a better day.

Mile Marker 369 was a good example.

After a particularly tough Thursday, I awoke Friday morning with a new resolution.  And even though I saw out my window the fresh green of spring, it was like New Year’s all over again.   

I WILL BREAK IN THIS SOCKET, I thought.

Well, it seemed logical enough at 6 a.m. 

After all, the socket’s made of plastic and carbon-fiber.  How could I expect it to fit perfectly right away? 

The first few miles in new hiking boots are always uncomfortable…. Why not a new socket, too??

There’s a back story here, of course.  Resolutions always lift you highest when you’re spiraling low.

Thursday began at Prosthetic Innovations.  As usual.   In fact, I’d been there so often that Christine, who works in their office, joked that I should be an employee.  She has a point.  For the past three weeks, I’ve spent more hours at PI than at my own job! 

But this was important.   We had more socket-tinkering to do.  I couldn’t sit down without the socket's stiff edge pressing sharply into the back of my leg.  Prosthetist Tim got down to business.  He cut down the socket's rim and padded it with a silicone gel cushion.  In a few short hours -- sweet success!  I could SIT again! 

The car ride back to the city was the most pleasant drive I've had in weeks.

But as I settled back into the workday, the pain poked through.  It was slightly different – half-tugging, half-burning – but there just the same. 

Maybe this chair isn’t right, I thought.  Maybe I should add a pillow?  A phone book?  A booster seat?   I raised my chair and lowered it again.  I pulled it closer to the desk and pushed it away.  I angled my leg and clicked the rotator above my knee.   Finally, I gave up and found an excuse to walk to the copier.

In the car on the way home, I shifted and squirmed through rush hour traffic.

At last, in my bedroom, I unscrewed the socket valve. 

Yowwwch!  

Where I should have felt an easy, loosening relief, the suction’s grip grew even stronger.  I was STUCK to my socket!

Slowly, slowly, I peeled it away from my body like a super sticky Band-Aid.

And then I saw what had happened.  The silicone pad Tim applied that morning had come unglued -- from the socket frame, that is.  

It was now firmly glued to the back of my thigh!

I let out a laugh-groan.

The resulting red, chaffed circle on my skin wasn’t pretty.  But in these days of mysterious nerve pain, I was overjoyed to find such an OBVIOUS reason for all that suffering!

As I said, no matter how difficult each night ends, I tend to wake up in the morning brimming with HOPE. 

So when day dawns on Mile Marker 369, that is exactly what happens.  

I come up with my newest resolution:

I WILL BREAK IN THIS SOCKET.

With renewed energy, my leg and I kick off our morning pep-rally.

Get ready for a comfortable day, I tell it.  Today will be better!  We can do this!

I can’t explain it.  Despite the stickiness of the night before, I am LOOKING FORWARD to putting my prosthesis on again (without the gel padding, of course).

“It’s a new socket,” I say aloud.  “I just have to break it in.”

I roll on the pull-bag and begin.

Ouch, ouch…  

Ok, well... Leg's still a little sore.  But better.

Two hours later, I am at the rehab gym.  I walk on the treadmill for 10 minutes.  

TEN MINUTES! 

That’s 10 minutes more than I’ve walked in a long time.

This is just the beginning.

I am BREAKING IT IN.

This new resolution grants me patience.  Relieves me from the constant pressure of expecting a quick fix.   And reminds me that this process takes time.

Of course, as with all New Year’s Resolutions, I can’t promise how long this one’ll last. 

But look at it this way:  it’s already March. 

I figure that’s a pretty good start.

Right Here

Mile Marker 363:

So I didn't go to Florida.

I stayed close to home -- stuck with places and routines I know well.  Old City, dress shopping, school, Starbucks.

These "usuals" have changed, though.   They've become part of a movie set where I live my new life.  One where my old reality plays only a small part and there are new surprises where I least expect them.

The week's also been punctuated by trips to Prosthetic Innovations.  Every other day -- literally.  This new “total suction” socket is challenging my skin.   But Tim's got a whole bag of tricks, so I return again and again.

The funny thing is, PI isn't an old haunt.  But in many ways, it feels more comfortable and familiar than my old places.

There is no history there.  I am the NEW me.

I know where I stand.

Everywhere else, I keep wondering, Where am I?

Seven years ago, I lived in a tiny Old City apartment that overlooked a dance club called “The Five Spot.”   Each night, that hard bass beat rattled my bedframe.  Once around 2 a.m., I woke up to a ruckus outside my window and watched in my pajamas as clubbers were held hostage on the roof at gunpoint!  (Really, it's true!)

But on the whole, my life there was uneventful.  To get to work each morning, I hopped on the EL.

On Sundays, I skated down Market Street to meet my Landskater pals at the Art Museum.

On holidays, we walked to Penns Landing for fireworks.

Last Saturday, my friend Bosco and I strolled the same streets.   Up and down those crumbling curbs and uneven bricks.  

Every home needs one, right?

 In and out of little boutiques where the least expensive item costs almost one day’s pay. 

We reminisced about the days when we were regulars in that neighborhood.   How all my stuff fit into an apartment the size of a walk-in closet.  How on Saturday nights in our sweaty skate clothes, we'd plow our way through streets packed with mini-skirts and tube tops.

We laughed at how simple and fun it all was.

While we talked, I felt the dig of my new socket.

We estimated whether I could make it to the next block.

We calculated how long we could stretch our parking time with the handicapped placard.

Old City was new again.  Where am I?

On Sunday, a shopping adventure gripped me the same way.  

My mom and I used to be Mall Mavens!   Armed with coupons, we'd comb the racks for hours, dragging along our combined weight in shopping bags.

This Sunday was different.  We drove to the Promenade in New Jersey because you can park outside each store.  It’s built like a shopping center -- an ideal set-up for a new amputee who can't trek half a mile through long mall corridors.

Same stores, different location.  It was just shopping after all.  Or was it?

Normally, I'd jump at the opportunity to get 30% off... but not when it applies to MY LEG!

No sooner had I lifted my prosthesis to slide on a pair of pants, when I heard it.   

“Pssst.”  The tell-tale sign of air in the socket. 

Turns out TOTAL SUCTION is not quite total.

It happened twice.  Is that 60% off?

Where am I?

Mile Marker 367: 

Yesterday morning landed me in another familiar spot.  A well-loved classroom that took me back to my first school in Philly.

I spent 5 years there as a beginning teacher.  During the summer session, my middle school students used every excuse to convince me to take them for ice cream on Chestnut Street.  The parlor, Scoop De Ville, had thousands of flavors, toppings, and syrups, and the kids challenged each other to order the craziest concoctions.  The "chocolate/peanut butter/coffee milkshake" became a regular staple in our summer school class.

But yesterday it was “Friends Day,” a day when community members are invited in to tell their stories.  The students – 5^th through 8^th graders – welcomed me eagerly!

And we had fun...  

We taught each other how to walk – step by step.  (It’s much harder than it sounds!)  

We dropped eggs to figure out which material would best protect your head in a bicycle accident.  (It’s FOAM!)   

We  examined my Genium in action.

And we entertained lots of good questions.  (Especially in light of this week.)

“If the socket’s tight, does it ever hurt your leg?”

“Yes!” I wanted to shout.  “Yes!  Yes!  All the time!!!!”

Instead I explained about socket rubs and the intricate adjustments needed to get the prosthetic fit just right.  This was, after all, a learning experience :)

Then we headed out into the city sunshine.   To walk!  

Mile 367 buzzed with energy.

Enveloped in the rhythm of their bouncing steps, their constant chatter, I couldn't imagine anywhere I'd rather be.

Still lost, perhaps.   But COMFORTABLY LOST -- in their crowd. 

When I think back to those summer ice cream trips, what I remember best is the moment the shop's doorbell jingled.  Our class sauntered in from the heat, inhaling the fresh blast of air conditioning and that sweet anticipatory aroma of treats to come.  

The owner of the shop, a woman in her 50’s (who seemed very old to me at the time!), greeted us from behind the counter.

“Now, where’s the TEACHER??” she always asked with a smile.

We laughed, too.

Where am I?

Yesterday in Mile 367, the kids showed me the answer.  At least for now.

Walking step by step with that curious, enthusiastic bunch of students who still towered over me.

She’s right here.  I wanted to tell the ice cream lady.
Right here.