MY CONFESSION: Trapped in Time: What DEFINES us as people when we are SICK?

I have said it a million times, maybe you have too. A few different versions I have told myself, as well as other people...

"I will NOT let my disease DEFINE me."

"I am MORE than this illness."

"I am going to BE something someday"

Being a singer, and an avid Country music fan, the soundtrack SONG to my moment right now.

"He had dedication, he had the heart and soul"
"I'm gonna be somebody, one of these days I'm gonna break these chains, I'm gonna be somebody someday, you can bet your bottom dollar I will"


 I get chills when I hear the line, "One of these days I'm gonna break these chains."

Guess what?  I did.  

I got better, QUICKLY.  (I have started an entirely different blog for that.  Check for the link soon!)

From paralysis to walking, from horrible muscle spasms to almost spasm free, I am better.

Not perfect, but, BETTER.

I thought my disease, after 7 long years now, WAS the chain holding me back from BEING SOMETHING, being someone that does something important.

I'm going to actually put this in writing. (just want to point out, this is actually causing me PHYSICAL pain to say)

I WAS WRONG.

Yup.  It took me this long to figure out that I am the only thing, well, the only person in my OWN way.  I am tripping over the past, chaining myself to negativity, and drowning myself with dreams of wanting to go back to the way things used to be. 

I read through my old blogs, and I spent so much time dwelling, and I thought that if the MIRACLE of health ever graced me with its presence again, I would just be able to pick up where I left off.

What I thought would happen:

• I'd pick up a paintbrush, grab some tools, and start my remodeling business back up again.
• I'd go right back to the ball busting, hard-ass that I was, taking "man cards" and being tough.
• I'd be able to walk proud, and tall again, thinking nothing could break me.
• I'd live my life, without a care in the world.
• I would not feel alone.
• I would be confident again that I could do anything...

WHAT ACTUALLY HAPPENED:

• As for the paintbrush, I did pick it up. I grabbed some tools, called some customers, and POOF, I was working again.  It felt GOOD.  But it didn't last.  My headache (Occipital Neuralgia) decided to flare up, and more procedures were necessary.  
• I also went back to the hard-ass, mouthy, emasculating person I was...(I never REALLY stopped being that person, even from a wheelchair I can rip a man card out of a guys pocket without him even seeing it coming) BUT, I realized I was no longer an ACTUAL tough girl.  I just have a mouth.  A LOUD mouth, but, being tough requires some form of actual way to back it up.  I don't have that anymore. 
• Walking proud?  HA!  I am a broken shell of what I used to be, so if you see me walking proud, I'm faking it.  (I titled this blog "CONFESSION" for a reason) I haven't felt proud of anything I have accomplished for years. Excluding childbirth, because I did a GREAT job at making the world cutest little girls, I have done NOTHING to date that I feel like I can claim as my own anymore.
• Live.My.Life.  Well, I thought I was.  In the 8 weeks following my miraculous recovery(ISH) I thought I was doing things that constituted LIVING.  "Without a CARE"?  Nope, that shit didn't happen either.  WHY? Because IT IS NOT HUMANLY POSSIBLE to accomplish.  Especially if you are/were as sick as I was, there is no way in hell that you can just put it all behind you and just float through life with zero stress.  CONFESSION:  I'm scared to death.  Every day, I wait for the other shoe to drop, and to get sick again.  I wait for pain to creep up and take hold, and bring me right back to my prison.  I wait for my arch enemy, my nemesis, every minute; the one dreaded full body muscle spasm that will break the wrong bone, and send me to the hospital, or worse.  Can I just be happy? Worry free?  NO.  No one can, but especially me.  The anxiety that comes with the aftermath of this illness is pretty bad, but it's not all just about being sick again.  I worry about everything. 
• Alone.  What a horrible word.  CONFESSION: I hate being alone.  I want to be LEFT alone, but I always need to know someone is coming back.  I have recently been "self-checking" (yes, STOPPING myself to see if I actually NEED to be doing, or saying whatever it is.  If more people tried this, the world would be a better place.)  I realized that the word, yes, just THE WORD alone is written everywhere in my life.  Who wrote it?  ME.  Example?  My song-writing.  Damn near every song I write has the word "alone" in it.  WOW.  Really?  For someone who is surrounded by people, love, and more people, I cannot be alone.  Ever.  (My song, Kid Again, is the first place I noticed it, but it's in so many more, they just aren't recorded yet.  Click the link on the song name if you'd like to hear it.)
• Confident?  Hell no.  Cocky, yes.  Defiant? Absolutely.  But I lost my confidence with my pride, and my Give A Shit years ago.  So, I'm off to find it again.

Only one problem with that:

I have no idea who I am.  
I have no idea what I am supposed to do now.

I am ME, I still have my convictions, morals and principals, and a long list of other things...LOVE, PASSION, DETERMINATION, all ingredients to some soup of life that I need to re-manufacture from the ground up.

And as of right now, I am at square one.

So, my disease DID define me.  I was sick.  I have Stiff Person's Syndrome, and I wouldn't trade my years of hell for anything, because they taught me how to die.

YES, I said, "They taught me how to die."

So, now that I know that, how the HELL do I figure out how to LIVE?  I mean really LIVE.

I am sad, excited, distraught, happy, and everything else in between right now.

I look in the mirror everyday and see a stranger that I am now in charge of making into a WHOLE person.  I don't know where to start. So, if you think I've lost my mind, maybe I did, but I'm going to keep pushing boundaries until I find out what makes me genuinely happy.

Because I don't know what that is anymore.