The New Normal

Mile Marker 2223:

Writing this post has been like trying to pull off a very sticky Band-aid.  It's hard to explain something I'm still grappling with myself.  But it's time.  I need to go to bed.

November 9th awaits.

In my last post, I told you my new socket ROCKS.   I need to clarify a bit.  By "rocks," I mean the socket is somewhat comfortable.  And by "somewhat comfortable,"  I mean BEARABLE.  WEARABLE.  Most of the time, anyway.

By "most of the time," I mean about 70%.

If you use a prosthesis, you'll know that's a pretty decent return.  My last socket was 50/50 at best.  But if you're a teacher, you'll recognize 70% for what it is:  a C-.

I belong to both factions.  In school a C- doesn't cut it.  Still, this socket is the most helpful one so far.

It's all part of this line I walk called the New Normal.

I know what you're thinking.  There's not much "new" about it.  After all, this weekend marks 4 YEARS since the accident.  Four years is a long time.  So how can it be that life hasn't returned to normal yet?

I ask myself that question all the time.

But on the eve of this milestone -- the 4th Anniversary -- I think I finally get it.

My "old normal" might always be one step away.

On this blog, I usually talk about the bigger moments.   And I wouldn't trade those for anything!  But the New Normal includes all the smaller steps in between.  Without them, I wouldn't get anywhere!

So here are 10 snapshots of my New Normal that maybe you don't know about:

1.       It takes a minimum of 3 hours to get ready in the morning.  Sometimes longer.  This includes getting my digestive system in order, getting my leg to fit right, and all the usual stuff -- teeth brushing, hair combing, picking out clothes...  It's a routine I cling to, as much as I want to stray from it.  Bottom line:  If you see me at 8 a.m., you can bet I've been up since 5.

New socks are exciting too!

2.       I still spend a lot of time Walking It Out.   You'd think after 4 years I'd have this leg thing down.  But no.  On average, I adjust my prosthetic socket about 5 times a day.  And that doesn't count the times I want to adjust it, but can't.  New pants throw me for a loop.  New shoes feel like new feet.  Every day is different.  

3.       I carry my weight in prosthetic supplies.  With all my equipment malfunctions, I fell into the unfortunate habit of dragging around a backpack as heavy as I am.  Recently, I've been trying to lighten the load.  So I downsized, keeping only a few necessities:  spray alcohol, AdaptSkin, hydro-cortisone cream, and an extra vacuum seal.  My Allen wrench is stashed in the car.  For now.  We'll see if it stays there...

4.      Fun happens in small quantities.  Rock climbing, biking, skating, and hiking are all impressive, but they don’t happen that often.  My body used to run for 17 hours straight; now it conks out after 12.  Most days, the usual activities  – going to work, exercising, volunteering, grocery shopping, doing laundry, and making dinner – are more than enough.  If I can manage 1 or 2 of those each day, I consider it a win.

5.   I drive a lot.   Yes, I cringe every time I support the Parking Authority, but the truth is, I can't always walk.   Most days, I'm not sure I'll be comfortable and functional enough to get from Point A to Point B.  Or back.  So I take my little Honda along for the ride.  Luckily, I still rock at parallel parking.  (And by "rock," I mean rock!)

6.       I have a last minute cancellation policy.  I've always been good at making plans, but lately I've become even better at breaking them.  Even after 4 years, some get rained out.  Every decision is a game-time decision.   I'm easily exhausted and overwhelmed.  I still can’t depend on my body.  At times, it's frustrating!

Shhh!  They're treats
for the Trauma Team  :)

7.       I bake a lot of cookies.  But they aren't angry.  Usually, they're GRATEFUL.  And so am I.

8.       I don't like to use the word pain.  But in last 4 years, I've discovered more types of discomfort than I ever knew existed.  I've felt it in my bones, organs, muscles, skin, and in the leg I no longer have.  It makes me wiggle in my chair.  It stops me from walking.  It fills my head with static.  Even on the best "leg days" there's always poking, pinching, and burning I've learned to ignore.   In fact, I've become so good at ignoring them, I often find red welts when I remove my prosthesis.

Hangin' with my buddy Jeff...
(He's workin' out.  Me, not so much!)

9.       Sometimes I go to the rehab gym just to TALK.  (For those of you who used to skate with me, I'm sure you aren't surprised!)  The wellness center at Magee is like a training room and a support group all in one.  Often I need an emotional workout as much as a physical one!

10.   To end the list on a light note, I wish someone would invent a drive-thru supermarket, Velcro-seamed pants, and a prosthetic rain cover that looks cuter than a Home Depot bag.  These would all make my life a lot easier!  And while we're at it, how about a Taser for my Genium?  It would make going out at night a lot safer too!

One more story before I go...

A few miles ago, I was sitting in my car at a red light when an unlikely creature crossed the road.

A butterfly.

Its reddish-orange wings lit up the cloudy afternoon.  But something about it didn't look right.  It hovered merely feet from the ground, passing dangerously close to the cars' headlights.  It sputtered and fluttered.  Dipped down when it should have flown up.  It was working its little body so hard, I could barely breathe watching it.

I wondered if it was injured.  If at any second, it would be knocked to the ground by a passing car.

As the light turned green, I lost track of it.  I think it reached a patch of grass by the sidewalk.  I hope it did.

If you've lost a loved one, or have had a life-changing illness or injury, or have cared for someone who has, you know a New Normal follows.  It's not right or wrong.  It just happens.  You fall into the rhythm of a new equilibrium even as you search for your old one.

I could add a thousand items to my New Normal list, and it still wouldn't capture all the changes that have come about in the last 4 years.  I'm still the same person I was before the accident, but I don't always feel that way.

Mostly I feel like that butterfly.  Flapping my wings so furiously just to move inch by inch.  To do each little thing I was meant to do.

There's a healthy balance around here somewhere.  I'm still looking.  Step by step -- within this New Normal -- I'm hoping to find it.

We'll see what the new year has in store.

Happy Anniversary.

Cleveland Rocks (and so does my new socket!)

Mile Marker 2155:

In a rest-stop parking lot on the Pennsylvania Turnpike, I sandwich myself between the front and back doors of my mom's Honda Pilot.  I tug down my gym pants (there are shorts underneath!), remove my outer socket, and release the valve from the inner one.  Balancing on my right foot, I toss 10 pounds of prosthetics into the backseat.   Finally, I hoist myself in too.

In the car next to us, two little girls peer out the window, gaping and wide-eyed.   If you've never seen anyone take off their leg, it's a pretty good show!

At Mile Marker 2155, I'm not in the new socket yet.  And my current one, while sort of comfortable, is riddled with inconvenience.  You've heard the stories:  I can't hike; I can't reach for grocery items on the top shelf; and now, I can't even climb into Mom's car without losing suspension.

So on and off my leg goes at every rest-stop, diner, and gas station across western PA.

(Flat Stanley comes too!)

Seven hours later we reach Cleveland where, thankfully, we park the car and walk.  Andy and Nina arrive from Chicago to join us.

Together, we make our way toward the lakefront, dotted with football tailgaters and crisp white sailboats.  Socket angst or not, I get swept up by it all!

We spy the Rock and Roll Hall of Fame, a glass pyramid that reminds me of the Louvre.

A tribute to one
of my favorite rockers!

Outside the museum, we amble along the dedicated bricks.




Inside is a journey through music.  Many, many miles of it....

Tickets: $1.25 

From the Civil War to early jazz and blues.  Billie Holiday, T-Bone Walker, Muddy Waters -- folks I recognize from my grandparents' old record collection.  A poster advertises the Reverend C. L. Franklin and, in smaller letters below, his lesser-known daughter Aretha.

Museums are tough terrain for me.  The floors are hard, and we spend most of our time standing still.  Within minutes, my right leg aches as much as my left.  But the Rock Hall has a cool solution.  Tucked away in each corner are small, darkened theaters with cushioned movie seats.  Mom and I duck inside one to watch the evolution of American Bandstand.

When the movie ends, she tells me how as a teen, she and her friends actually saw the show live in person.  I'm impressed!

"Who performed?" I ask her.

"I don't remember," she says. "But it was in the afternoon, so we had to cut school to go."   (This last part she whispers, as if a truancy officer might be within earshot.)

My dad parks himself on a bench in front of a Beatles video.  For a half-hour, he follows their bumpy road to stardom.  (The next day, when we stop to eat at Ruby Tuesday, he gives us a lesson in Beatles history.)

The museum's collection is so massive, comprehensive, and REAL, I can hardly believe it.  We find bluegrass and banjos.  Elvis and the E-Street Band.  Jimi Hendrix and Janis Joplin.  Along the way, my musical taste expands like a loose guitar string.

Check out John Lennon's high school report card from 1956:

"He has too many of the wrong ambitions
and his energy is too often misplaced,"
writes the Headmaster.

A carton of "Bruce Juice"

Artifacts are everywhere.

Remains from Otis Redding's plane

Johnny Cash's tour bus

Even Kurt Cobain's death certificate
(which curiously displays his SSN!)

On a wall outside the restroom, I discover sheets of handwritten lyrics from "Purple Haze" and "Born in the U.S.A."   Both were carried by astronauts to the international space station and back.

Now that's mileage!

Topped off with
Vanilla-ApplePie-Bacon
milkshakes!

Finally I leave to meet college friends, John and Kris, whom I haven't seen in 13 years.  They arrive with their 3 boys, William, Christopher, and Matthew.  I brace my prosthesis and climb carefully into their minivan.  By some small miracle, my leg stays fastened!  We head out for burgers at a local Cleveland haunt, the B-Spot.  Our night rocks as much as the museum!

We're only here for one day, but it's a great show.

CLEVELAND ROCKS!

Mile Marker 2170:

Good news.  The new socket is ready.  Over the course of a few days, Prosthetist Tim tinkers out the kinks, and I begin breaking it in.  I've learned not to expect too much right away, but this one seems to have potential!

On Saturday morning, Mom and I meet up with friends Arnold and Mo for what turns out to be another great show -- the Limbs in Motion 5K.  The event benefits Walking Tall Charities, which helps uninsured or under-insured amputees get the prosthetics they need.

Arnold, an "above-knee" amputee like me, has been learning to use a running leg.  Neither one of us is ready for a 5K, but luckily there's a one-mile fun walk that's a good trial run.

Rockin' our new gear!

We're in Arnold's neck of the woods, and today his team is definitely in the house -- PTs, friends, and even a few nurses!  I just know he's gonna rock it!

As for me, I'm happy to do some of the walk with some comfort.  To hang with Mom and Mo.  And to cheer on Arnold as he rocks out in his new blade.

I'm just a groupie, but I hope someday to join his band!

As time rolls on, who knows what the new socket will bring?   I haven't yet tried hiking.  Or skating.  Or biking.  Or even climbing into Mom's Honda Pilot.  In my experience, socket fit can be as fleeting as a Top 40 Hit.   But if it's true that rock and roll is here to stay, then maybe, just maybe, things are looking up...

For today anyway, my new socket ROCKS.

Rock on, everybody!

Watch Arnold run -- with music from my favorite Hall of Famer!  (If you can't see it, click here to watch.)

Magic Camera

Mile Marker  2127:

On an exceptionally good leg day, I find magic in my camera.

Really, a good leg day is magic in itself.  So I go out for a walk.  A long one.  4 miles -- The longest I've ever walked on city streets in one afternoon!

As usual, I stop to shoot photos along the way.  Taking pictures enables me to really SEE what I'm passing.  To notice the shadows, the leaves, the intricacies of architecture.  It also gives me a reason to pause and regain my footing on the cobblestones!

In the sun glare, it's hard to see how the photos turn out.  When I squint into the two-inch screen of my camera, I can only make out lines and shapes.   But when I reach a shady spot along Walnut Street, I notice something unusual has happened.   The camera has unexpectedly shifted into "Painting" mode.  It's user error, I'm sure -- but the effects are downright magical.

A colonial garden transforms into an impressionist masterpiece.




Bricks and mortar, dull with history, shine like new construction.

The accidental change is brilliant... and addictive.

They create a jigsaw rainbow!

I see a row of houses in Queen Village I've passed hundreds of times, but now I shoot them just to see what happens.

My balcony plants!

It's a fun way to spend an afternoon -- walking around with a magic camera.

But it also brings to mind another magic camera I discovered during my days in the hospital.  Nearly four years have passed since then, but on a good leg day, it feels like a lifetime ago.

People often ask me, "When did you first learn your leg was amputated?"

I know they're disappointed when I tell them there was no defining moment.  There was no "A-ha!" or shouting of expletives (or any heart-stopping comments, for that matter).  There wasn't one specific moment when I stared down in shock at the emptiness on the left side of the bed.

My family credits this to the doctors and nurses who cared for me during that first week in Critical Care.  As I recovered from multiple surgeries, they told me over and over again how they were "able to save my life, but not my leg."  At the time, I was heavily sedated -- barely conscious really -- but still they repeated the story.  And when I finally woke up in the ICU, I knew what had happened.  I knew my leg was gone.

But I didn't know everything.  During that first month, surviving minute by minute was about all I could do.  I didn't know what I'd miss later or what would come after.  It didn't occur to me that I'd have to figure out how to live a whole new life up ahead.

When I moved out of the ICU to my long term room on 7 Center, I received a package in the mail.  It was from my sister's in-laws, Alan and Consuelo, who live in Florida.  In the chair next to my bed, I opened it gently, careful not to tug the tubes that surrounded me.

Inside the box was a tiny hardcover book called Mr. Eaves and his Magic Camera.

And inside that book was my defining moment.

My guess is that you've never heard of Farrell Eaves or his magic camera.  But if you read this book, you'll find out he's a retired engineer who loves photography.  One day while shooting photos for a class in New Mexico, he accidentally knocked his tripod over, sending his expensive camera tumbling into the rushing Pecos River.  Moving swiftly, he was able to rescue it, but not before it sustained serious damage.

The story hit close to home.

Farrell Eaves went to great lengths to dry the camera out.  He left it to bake for hours in the desert sun.  He tied it to his windshield while he drove 75 m.p.h. on a New Mexico highway.  Eventually, he got it up and running, but the camera never worked quite the same way again.

It reminded me of me.

As I paged through the book, the photos struck me, each one filled with more promise than the last.

They were simple things -- household items, landscapes, objects of nature -- but through the lens of the magic camera, they took on prisms and shadows, colors you'd never see with your naked eye.

I already knew about the damage to my body.  I could see it all around me: the Wound Vac machine that suctioned day and night; the metal retention sutures, like huge paper clips, that held my abdomen together; the tangle of IV tubes.

And I knew the existence of a distant road ahead.  But I had no clue how I'd ever travel it.

Paging through that book, I had my defining moment.  I understood now that everything would be different.  That a chance encounter had forever changed my world too.

The damage was beyond my control, but the LENS would be mine.  Mr. Eaves' photos appeared before me like a road map, or a tool, or the first hint of a strategy.  A tiny sliver of hope.  And however small it seemed, I knew in my heart it was the way to go.

I can do this.  I'll have a magic camera too.

Through his damaged lens, Mr. Eaves discovered new beauty in everyday events.  I would do the same.

After 2,127 miles, I can tell you it works.  If you keep your eyes open, this kind of magic happens everyday -- no camera necessary.   Even the smallest event can change your view, and the views of others.

A few days (and miles) after my long walk,  I park my car on 10th Street to check on the Healing Garden at Jefferson Hospital.  As I walk over to the parking kiosk, money in hand, a man in a nearby car waves me over.

"How long are you going to be?"  he asks.

"Maybe an hour,"  I say.

At first I think he wants my parking spot, but then he tries to hand me something.  "I'm leaving," he says.  "If you want my ticket, there's time left on it."

I take it and thank him.

Just then a homeless man calls out from behind me.   He's huddled in the shadows about 8 feet away on a small step where the buildings come together.  I didn't even notice him when I first passed.

I hand him the 2 dollars I was planning to put in the kiosk.

"Bless you, sweetheart!" he says.

I start to walk away, but he keeps talking.

"You really helped me today!"  he says.

I turn back around.

He tugs up his pant leg on the right side.  Across his knee is a long, vertical pink scar.  "They've been trying to fix this leg for a long time, and they told me if they can't fix it, they might have to take it off.  Then I see you today, walking like that!  And I know no matter what happens, I'm gonna be all right."

I glance down at my Genium shimmering in the afternoon sun.  "I'm glad I could help," I say.  "Good luck."

I don't have my camera, and even if I did, it isn't really the time for photos.  But I tuck the moment away for safe keeping.   Maybe today, in some small way, this man found his magic camera too.

So be open to magic.  And have your camera ready.



Sometimes a new perspective is just what we need.

Clean Slate

Mile Marker 2105:

I'm on my hands and knees scrubbing out the closets of my apartment.

The walls are scuff-marked and scribbled as if Harold and the Purple Crayon lived here before me.  But I'm determined to wipe them down.  Shelves are due to arrive tomorrow, which'll bring me one step closer to unpacking all these boxes.

For my cluttered home, the Jewish New Year couldn't come at a better time.   I know most of you don't celebrate Rosh Hashanah, but really, who couldn't use a NEW YEAR right about now??
  
In any case, autumn's a nice time to clean the slate.  How in the world did things get so dirty anyway?

My niece Riley Cate is an expert in that field.  Last week she ran her first "Spartan Junior" race.  At 4 1/2, Riley plays happily in the mud.  The soles of her feet are the color of charcoal.  She climbs bedposts and baby gates.  On any given day, she runs the gamut between circus acrobat and Pig Pen.

I didn't run that Spartan race with her, but it sure feels like I did.

It's been a year of obstacles and hills.  Losses and gains.  Plans and transitions.   One recent afternoon, I logged more than 4 miles just unpacking my apartment!

In case you're wondering, I did not cover 70 miles in the last 4 days.   I'm just running a little behind with blog posts!

For me, Mile Marker 2105 presents the perfect chance to start fresh.  Regardless of what you celebrate, September's a good time for taking stock.  A month to think about where we are, as well as where we're going.

If last year's slate is wiped clean, what would you want to write on your new one??

Here are my Top 5 this year:

It's my birthday!  Everybody wins!

BALANCE.  Earlier this month, a game of Pub Quizzo found me sitting directly between the winners and losers.  (Technically I was on the losing side, but I was granted asylum for my birthday!)   Along with unpacking, the last few miles have brought new job opportunities, a new haircut, and a new adaptive yoga class.  Through it all, I've realized how much extra stuff I carry around!  I'm still searching for balance -- between work and play, between holding on and letting go -- but it feels great just to breathe and let the equilibrium happen!

SWEETNESS.  Apples and honey are the foods of the season.  For our family dinner last night, I baked a traditional Jewish Apple Cake.   It's easy but takes multiple steps, which translates into lots of standing time!

So I'll add STRENGTH, too.  Peeling and slicing apples, preparing wet and dry ingredients, greasing the tube pan, and mixing the cinnamon sugar topping.  I can do it all thanks to the strength and technology that lets me stand long enough to spread the sweetness!

HOPE.  Yesterday I swapped High Holiday services for a prosthetic appointment.  (Maybe not the best footing to start off the new year, but it felt like a hopeful trade!)   A month ago Tim casted me, and now -- three fittings later -- we're finally honing in on a new socket shape.  Leg-wise, I've had a year of technical adjustments and malfunctions.  But with a new system on the horizon, the future of walking looks bright!

And finally, the most important word I'll inscribe:

HEALTH.

This week marks exactly 2 years (and 1,339 miles) since my last abdominal surgery.  That pretty much sums it up.

As I write this post, I'm thinking of 3 friends who, at this very moment, are struggling through their own journeys -- treatment for cancer.  Their wishes are modest:  to have their hair grow back, to get out from under their fatigue, to have a tumor so small the doctor can't feel it.  And of course, to live their lives cancer-free.

If you're lucky enough to be healthy, stop for a moment and GIVE THANKS.  Every healthy day is a GOOD DAY.

So clear your slate of daily annoyances.  Erase all the tiny challenges that monopolize your mind.   They are -- in the words of a wise surgeon -- bumps in the road.

When you're a kid like Riley, it's pretty easy to come clean.  All you have to do is soak in the bathtub!    But for us adults, the job's a little harder.  We have to stop and look around.  Dust ourselves off.  Get all our parts in working order.  And then walk onward, grateful for each step.

Happy New Year -- or whatever you're celebrating this season!