A Dark Lonely Road

Every now and then, the weight and gravity of this disease hits me like a 2 X 4.

Today was one of those days.

As I did my workout warm-up on the stationary bike, I almost came to tears.

This is my life.  Pain.  Fatigue.  Injections.  “Invisible” disease.  Joint deformity.  Surgeries.  Incurable.

Will it ever, ever get better?

As my eyes welled, I swallowed and fought back the urge to get off the bike, drive home and hide under the covers.  I’ve found that retreating never serves me .. It’s a lesson I’ve had to fight for, but it’s the truth, at least in my case.  So I stayed strong and stayed pedaling.

I think it was the word “incurable” that got me most today.

It’s such a “forever” word and it pisses me off.

[sorry, Mom]

I bent my head as I pedaled forward, letting my mind travel, allowing myself to think more about what Warriors of this disease deal with every day.  This is the journey I walked in my mind today, and it’s similar to the journey each of you walk every day. Never forget how truly brave you are, my friends…

****

A dirt road, shrouded in chilly fog.  Shadowy oak trees, arching over the road are dark, almost formidable silhouettes.

dark lonely road

I feel cold and alone, as if no one’s walked this road.

I have no idea which direction I’m heading; I simply walk.  Alone.

Tears begin to tumble down my cheeks.  I feel as if I’m missing something .. Is there a map?

I cry out, “Can someone help me?”

I hear a bird thrush above.

It’s just enough of a spook to make me stumble.

I hit the ground hard.  “Oomph!”

The blow hurts more than I thought it would.  I take a deep breath, my mind willing my body to stand up.  I can feel my mind working, commanding my body, but my legs only feel pain.

I can’t get up.

I push, but it’s if my muscles won’t cooperate.

A spooky “whooo whooo whoooooo” comes from behind my right shoulder.  The owl’s cry feels like an echo from another universe.

There’s a weight I feel .. It’s oppressive, stifling .. I try to carry it, forcing myself above the pain.

Fatigue, the voracious ghost.  Ever-present, always hungry and altering every ability to function.

The chill begins to penetrate my skin as I continue to work to get to my feet .. Why is this so hard?

I cry out.  “Help!”

“HELP!  Somebody, I need help!”

I look around.  The sooty gravel covers my hands.  I see a trickle of blood snake it’s way down my scuffed knee.  The pain feels so much worse than it looks.

Why does it hurt so much?

“Help!  Please, someone help me!”

No one’s there.  No one hears me.

I glance to my left.  I hadn’t noticed it at first .. Looking as if it had been struck by lightning, limbs of a large downed tree branch outstretch toward me.  I reach out, grabbing onto the knotty branches.  Will a loud grunt, I use it to pull myself up.

“Ouch!”

It feels as if every fiber of my body is on fire.

A small voice inside me says, “Look up.”

I look up .. And I see a shadow down the road.

“Hey!”

I hear myself shouting, waiving my arms frantically.

“Hey!  Can you help me?”

I stumble along the path, feeling the flare my body is fighting and the injections that my immune system scream about.  I feel fatigue enveloping my body.  The pain in my joints .. It’s chronic, ever-present.  I feel the stitches and staples from my surgeries.  I feel the sorrow from being alone.  I feel the frustration of trying to explain this disease; words, although an accurate description, seem to fall on deaf ears.  I stumble forward, tears streaming down my cheeks.

“Please understand me!  Please understand the road that I walk!  Can you help me?  Please!”

The silhouette is closer.  And closer.

I fall, exhausted, battered and broken, into the arms of another.

****

Sometimes, it’s simple.

One of the things that makes me craziest about our disease is the aloneness of it.

I abhor it.

This disease is an isolationist.  In fact, most autoimmune and chronic pain diseases pay the piper of loneliness.

But it doesn’t have to be that way.

What if you were to find someone – just one person – that you could turn to?  One person that could catch you?

It could be a spouse, family member, friend or support group member…

You don’t have to be alone.

In fact, you should never feel alone.

There is always someone there for you.

Don’t think so?

I’m here.

I’m here for you.

There.  One person.  Now, think of another that you could count on.  And another.

Write them down.  When you feel alone, reach out to one of the people on your list.

I’m serious.  Put your pride down.  Stow your fears away.  Reach out for help.

You do not need to walk this road alone.

It is imperative that you do not walk this road alone.

****

Flashback from my reverie .. I’m pedaling on the stationary bike.  I slow and come to a stop, dabbing my workout towel to my eyes.  Geeesh.  I’ve been crying in the gym.

I refocus on my present job:  my workout.  Today, I’m working arms – bicepts and tricepts.  It’s the regime that hurts my hands the most, and I’ve managed to skip it for the last several months, but it’s time to get back on track, so to speak.

I push myself through the workout.  I feel good, not real strong, but good.

Then comes the cardio.  Background:  I’ve assigned myself with more cardiovascular work (i.e. Elliptical, Stair Mill, running, rowing, etc.) to transition my workouts to the next level.  Oh, and I have a friend’s wedding in March.  Argh.  And, you should know that I can’t stand cardio.  BORRRRRR-ING…..

[snooze]

But.  I’ve assigned it to my workout, and by golly, I’m gonna do it.

I climb on that God-forsaken Elliptical machine and begin to pedal.  30 minutes.

[goodness gracious, this is going to be the longest 30 minutes of my entire life.]

Mid eye-roll at a reality TV story, one of my friends climbs on the machine next to me, grinning.

“Why are you grinning?  These machines make me crazy!”  I squawk.

“I hate cardio too,” he quips.  “Let’s do this.”  His machine is on, and he begins to pedal.

And suddenly, I don’t feel so alone anymore.  This journey may not be so bad, after all.

That dreaded cardio had nothin’ on me.

Kinda like life .. Just look up, look around, take notice .. You will see that someone’s there for you.

Just like I am now.

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