Re-arrange me….let the world try.

This title *points up* describes my thought process at the moment.  Been doing alot of thinking about virtually everything.  The one thing I have never compromised on is on who I am.  In the core, I mean — not the usual dipshit stuff like annoying habits, etc.  — the Real Deal.  My soul.  I have never apologized for who and what I am.  My attitude since high school (after being repeatedly teased and traumatized by my classmates) has been if you don’t like me, too damn bad.  I am who I am, and that’s it.  In junior high I was too wrapped up in trying to fit in that it hadn’t quite touched down yet.  But, in high school, something clicked.  While it still hurt, alot, I started to not care.  I started to revel in the person that  I was becoming, instead of mourning the person that everyone teased.

It was a huge revelation at age 16.

And it is still with me to this day.  Even more so, because now I try to be different.  I purposely don’t follow the pack.  I am who I am.  If you don’t like me, then deal.

It also taught me a very important thing: the value of strength.  I come from a family of true warriors, so this isn’t all that surprising, but discovering it was.  When I was 15, I had major jaw surgery to correct severe TMJ.  The joints were literally worn away, and I was told, quite bluntly, that I’d lose all my teeth by the age of 20 (not to mention the pain of headaches and such that my dad goes through on almost a daily basis).  So I had the surgery.  Was wired shut for 2 months.  Had to be on a liquid diet.  Had to watch everyone around me enjoy food.  That part sucked.  But the pain wasn’t too bad….until they had to re-open my jaws (they were stuck in the same position for 2 mos.) and break adhesions.  Yes, I say break.  I came very close to breaking my mom’s fingers that day.  And folks, I have a high tolerance for pain.  But that–that was unreal.

At age 26, I got my first jaw infection, and had to have 4 pieces of hardware removed from my lower jaw on the left side.  More pain.  A wire had moved and was constantly poking me.  Every time I talked, ate, or just moved my mouth.  Scary stuff.  The second time was in 2004, over Christmas.  Upper left jaw, this time….a few more pieces.  Total: about half is gone.  I started with 28.

So I’m no stranger to pain, physical or otherwise.  As of yesterday, I’ve been divorced for a whole year.  I left my ex because he was unfaithful.  Actually, there’s more to it but suffice to say that it was the best possible thing for both of us.  It nearly killed me, and it was tough, and those sleepless nights sometimes still haunt me, but I made it to the other side.  I’m where I couldn’t picture myself being a year ago.  I couldn’t imagine ever being happy again.  But, life sure knows how to throw you curveballs because, wouldn’t you know it, I’m happier than I’ve ever been.  My health is better.  I feel emotionally strong again.  I’m not severely depressed.  I’m happy.  Imagine that.

But look what I had to go through to get there.  If I were to add up all the bad experiences of my 31 years, it would be a big number.  My life has never been easy.  I’ve always had to fight, to struggle, to make things happen.  I’m also driven to the point of obcession (OCD anyone?  I’m not, but I could be).  Why?  Well….I believe fervently (and this will sound really fucked up) that having fibromyalgia (an autoimmune disorder causing a myriad of symptoms including but not limited to dizziness, chronic fatique, severe pain, migraines, stomach problems…. etc) has caused me to work harder than most people.  I think that without it, I might have fallen prey to complacency, and would not be as accomplished as I am today.  It also made me take stock of my life, and focus on the things that count, toss away the garbage.  In that respect, it’s a true gift.  And I thank God every day for it.

So, we’re warriors.  My dad had his consultation with his surgeon today.  His surgery has been postponed because it’s not quite time yet (to preserve his privacy, I’m purposely omitting details, so it prolly sounds hokey, but it’s really okay) and in 4 months, his body will have had enough time to do what it has to to prepare.  It really is the best course of action.  He had to have a shot, and the doc suggested Monday.  My dad said, “Monday?  What about right now?”  The doc was floored.  That’s my dad.  Bring it on!  He wants this over.  He knows he’s in for alot of pain and discomfort and being laid up for awhile (which to him is not cool), but he’s doing everything he can to stay alive.  He’s making the choice to live.  To beat this thing and come out the other side, victorious.

I wrote a poem, many moons ago, about a failed engagement.  This poem became a song that my ex, my dad, and I used to perform.  It was sorta “our song.”  Anyways, it’s about fighting and being victorious.  It’s hard to sum up because it’s an experimental, very different kind of poem.  Here’s a snippet:

on the other end of the line

it was a mistake
but you pushed
so now you have it.

you’ve reached
I am victorious.

It was actually me talking to the woman who used to be my best friend.  I can remember when I wrote it.  I was working the afternoon shift at the office of the job I had then, typing away, mostly freewriting, when my muse handed this to me on a silver platter.  I don’t think I even edited it much. 

Ah, the memories.

So, anyways, just wanted to share that.  I know, with everything in me that Dad will be okay.  That he’s strong, stronger than most, that he has history on his side (my grandfather fought in WWII and lived to tell about it –he’s still alive; my grandmother fought cancer and fibromyalgia) and he has us.  We love him and want him here with us.  But more so than that, we want him happy.  I want him to be out in the garage, working on his cars, cruising Gratiot and Woodward and going to his car club on  Thursdays.  I want him to walk me down the aisle if I ever get married again.  I want him to hold my first book in his hands and cry with me when I get The Call.  I want him to grow to a ripe old age of 100, and live the fullest life he can possibly live, because I love him, and dammit, he deserves that.  He deserves to be able to live his life, to enjoy the little things, to spend time tinkering with his cars.  He’s not ready to go yet, you know.  I don’t think that day will come for long time, if I know my Dad. 

He taught me how to fight.  I think if I had to pick one thing that he taught me, that profoundly changed the course of my life, I’d have to say that it’s fighting for what you believe in.  And I don’t just mean picket lines and unfair labor practices.  I’m talking about everything.  I fought to have a full life despite fibro; I fight to write every single day; I fight depression.  Different people fight for different things.  But it’s that spark — that fire that won’t extinguish; that thing deep inside that refuses to give up.  My dad won’t give up —he won’t let cancer take him.  I know this.  Just as I will fight, possibly forever, to be the writer I want to be.  Note that I didn’t say published.  I do want that, don’t get me wrong, but ultimately, it’s the words.  That’s what’s most important.  I want to be published but failing that I just want to write.  And sometimes, it’s not as easy as hitting little buttons.  Sometimes it feels like I’m tearing some deep part of me loose.  Sometimes it’s facing off with my muse.  Either way, I won’t be happy without it someplace in my life.  It’s a fact.

But anyhoo, my point is that you gotta fight for what you believe in, for that thing that won’t leave you alone, because you need to.  You need to be the person you want to be.  And if the world doesn’t like it, well, fuck ’em.

Queensryche really said it best here.  Really, truly, deeply.


One thought on “Re-arrange me….let the world try.

  1. Hello there,
    I have just started a blog. Today is Fibromyalgia Awareness Day and here I am aching in every bone in my body, again … sigh. I searched for “fibromylagia” on the tag pages and found your blog.

    Like your dad and yourself I’m a fighter. Two years I had a rare bone disease that is a lot like a cancer and is treated the same way. My response to the news that there was treatment but that I probably would die was making the choice to live. My attitude was: Bring it on! And I came out the other side, victorious. I have outlived my death sentence and even though I rarely experience a day without pain, I’m glad that I’m still in the game.

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