My road came to an unexpected halt on November 9, 2010.

That morning, I was bicycling to work when a garbage truck turned across a city bike lane. I was in that bike lane.

A team of trauma surgeons saved my life, but they had to amputate my left leg. My body and life were forever changed.

The journey of a thousand miles begins with one step.

As I learned to walk again, I measured my recovery in steps and then miles. Over time that journey grew into something more -- a way of being in the world, wherever I go.

I am a person of ability and disability. I travel in the space between. These are my postcards.

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.