Sunday, January 28, 2018

"Be Free" - some raw and unplugged ms

I'm trying, supportive gym mat.  Totally trying...

But, it's hard to feel slightly (moderately and sometimes significantly) captive inside my own body.  And mind.

So much of the past 18+ yrs of living with ms has been a mental battle for me.  The struggle between acceptance and denial.  Humility and ego.  Understanding and indifference.  Vulnerability and insusceptibility.

It's living with a condition that ebbs and flows, waxes and wanes, and does whatever it darn well pleases - whenever it darn well pleases.  Sometimes, it has meant or means not being able to see well enough to drive.  Walk well enough without an aid.  Think well enough to "even".  And then clears up.  Intertwines.  Goes on a slight hiatus.  Comes back with a vengeance.  All with no heads up...

See, typing this is like therapy.  I suppose I should extend myself a measure of grace, since it's hard to reconcile a thing when it keeps changing.   

It's the occasional remembrance of days when coordination and physical skills/abilities were at the top of my personal "things you do well" pyramid.  With those remembrances, which usually come in the form of retro newspaper articles from the sports section friends will lovingly share with me, come wonderful thoughts of the friendships and feelings of mutual respect for fellow athletes forged on each side of the playing field.  I hold each very dear to my heart.  But, what also has a way of seeping in at times is a fair measure of muck to work through.

Sometimes, the muck is deep.

I'm not talking about reliving any sort of "glory days".  I'm too old for any of that.  It's not even about a desire to go on half marathon and 5k trips with my friends, or run/jump/climb at a mud run - all of which I am no longer able to take part in, due to my inability to run (the jolts to my spinal cord kick off mad nerve pain and incoordination) or descend (I lose coordination and wreck myself).

No, wait.

If I'm being honest, it used to be that.  I used to want to go with them to do beach and mud runs, more for the fellowship than the actual running.  But, I've reconciled that in my mind.  I'm okay with not running on the beach, because I'm actually quite good at sitting on it ;)  I'm okay with not being able to throw myself around in mud, because I have the ocean!  The ocean is my playground...a place where I can jump and be held.  Weightless.  Spun about.  "Run" and dance in the water, because there is no jolting of self on a hard surface.  Floating sorta works with my equilibrium and makes me feel oddly balanced.  Or not.  I don't care, though.  I'm in the ocean!  I don't care about anything out there.  Not what I look like in the mirror.  Not if anyone thinks I look ridiculous (I do) throwing myself into the waves, tucking my feet up, allowing the water to throw me around.  I just don't care!  And I've noticed I'm smiling as I type this...

Anyway.  I suppose I can celebrate that reconciliation as growth.  Growth mindset, yo.

What I'm saying is...I *just* want to get through the grocery store with my full faculties.  Full vision - or enough to drive home with.  At least some measure of coordination, meaning I can get the items on the belt without requiring a clean up and bags into my trunk without dropping them in the parking lot.  Can I *just* do that?

Can I *just* blow my hair dry each morning without hitting myself in the head with the hair dryer?  Or spraying myself in the face with the hairspray?  It's all pretty funny, but...

Can I?

Can I not be judged for how I do ms?  Because those judging me don't see what's going on inside my head nor feel what my body feels like.  The intense mental pep rallies that I often need to throw for myself simply to emerge from my bed at times, inclusive of my dad's Army phrase of "Be all you can be" and replaying his 8am weekend wake up calls from my teenage years of "Time to get up!" and "There's a list of s*^t to do, you need to get up and get it done!" and "Don't piss the day away!"  Ironically, I think of that phrase so often.  One of my biggest symptoms is frequent urination.  There are times I feel as if I'm doing just that...

It's reading all about the spoon theory that's become meme fodder in the social media world, wondering how it is that all these people know how many spoons they have on any given day, because I sure as hell don't.  I don't have spoons.  I have coffee.

It's the inner argument between gratitude - for innumerable blessings and goodness - and my feels.  The real ones.  The ones I don't talk about.

I'm struggling to find the right thing to close with.  Maybe that's because ms is confusing and stupid and unpredictable, making a 'power close' tough to pin down.  Maybe it's because I struggle with the anxiety of saying too much and actually posting it.  Or maybe...and I hesitate to get this's because my caffeine level is low.


"Be free" - says the mat.

"I'm trying my best" - says me, who battles an invisible enemy on the daily.