Next to Normal

Mile Marker 4847:

Hard to believe, but it's been nearly 100 miles since my last post!

During that time, not much has happened.  But don't get me wrong.

I LIKE BORING.

When people ask what's up, I say, "Just normal stuff."  And I'm happy with normal!

At Mile Marker 4847, it's Presidents' Day, and my neighbors and I are planning a president-themed "Game Night."  I guess normal can be pretty exciting if you hang out with the right people!

Can you guess which presidents are represented?!

It's T-minus 7 hours till Game Night, and I'm strolling the aisles of Party City in search of red-white-and-blue swag, which is basically nonexistent in February.  (Doesn't anyone celebrate Presidents' Day??)  Finally, I settle for some 99-cent flags and patriotic Mardi Gras beads.  I carry them up to the cash register.  Simple enough.

Or is it?

We're having an early spring here in Philly, so it's sunny outside, maybe 55 degrees,  But inside the store, the heat is BLASTING.  By the time I walk from one end to the other, sweat beads up under my jacket.  It feels like summertime.  Uh-oh.  My leg begins to slip.

As the cashier rings me up, I peel off my coat.

I picture cold things...
Ice cubes.
Snow drifts.
A winter wind.
Plus a few penguins.

Finally, bag in hand, I start out to the parking lot.  My prosthetic liner is already slick with sweat, so each step feels exaggerated.  Hip hike.  Pendulum kick.  The socket's loose, but I know it won't come off.  Every day I wear a Velcro waist harness, just in case.  I'm prepared.  This is not my first rodeo.

However, it is my last errand.

It's also just a normal day.  As normal as days get, anyway.  I had wanted to go to Target too, but now I need to re-fit my leg.  As an above-knee amputee, the socket comes up to my hip.  Fixing my leg in a public restroom is at best unpleasant; at worst, dicey.  I've done it many times, but I'd rather go home.

A while back, I wrote a post called The New Normal.  Now it's two years later, and The New Normal feels, well... normal.  Still, it's not most people's normal.  Instead, it's like standing next to it.  The normal world is a spinning jump rope.  I watch.  I wait.  And I jump in when I can.

Sometimes you need a break!

On the drive home from Party City, my little leg is chattery.  When sweat pools at the bottom of the liner, the vacuum tugs on my skin.  It makes my nerves noisy, prickly, like Christmas lights flashing at all the wrong times.

To distract myself, I turn on TED Radio Hour, an episode that happens to be called Getting Better.  The speaker, Jennifer Brea, suffers from myalgic encephalomyelitis, also known as chronic fatigue syndrome.  She talks about how her mysterious symptoms came on, and how she had to adjust to a new normal -- one that's unpredictable, uncomfortable, and also uncertain.

She captures it exactly.  "On the one hand," she says, "every day I try to live the life that I have as well as I possibly can.  I'm also fighting for a better life at the same time."

That's it.  That's Next to Normal.  

It doesn't mean giving in to the struggle, but it does mean embracing it while you work toward something better.

It's a strange place to be.  The slightest skin irritation can knock me down.  There are days when I cover 4 miles, and other days when I cover no ground at all.  And while I've learned to carry a towel, and wear a harness, and take to the couch when necessary, I still imagine a time when life might be different.

And where did I put all those "no-sweat"
products from last summer?

Could a new socket protect my femur, my skin graft, and all my other problem areas?  Will isometric exercises keep my leg volume from fluctuating?  Is it possible to put Velcro inside my pants seam for easier leg adjustments? 

My mind is a busy but optimistic place.  The jump rope keeps spinning, and I'm determined to jump as long as I can.

Finally, I arrive home.

In the comfort of my own bedroom, I get out a towel, Adaptskin lotion, and a spray bottle of alcohol.  I press the valve on my socket and slide my leg out.  Peel back the liner.  Dry off everything.

Phew.

Then I put it all back on again -- with some modifications.  I powder my leg with climbing chalk to combat the sweat.  I fill my water bottle with ice.  I change into a sleeveless shirt, even though it's February.

Then I jump back in.

The normal world awaits.