Thursday, June 28, 2012


It never goes away.  Like an unwelcome guest who tells one more joke, one more story, one more....  Like a thunderstorm on the day of an outdoor wedding, it ruins everything.  Like a horrifying nightmare while I am awake, it leaves me scared and angry and frustrated and wondering....

I think if I just try hard enough, or be strong enough, or think more positively, or pray harder... But it never. goes. away.  Like a woodpecker outside my bedroom window at the crack of down... rat-ta-tat-tat, rat-ta-tat-tat...hammering away, over, and over, and over and over...

I want to run from it but it only comes with me.  There is no escape.  I want to run far and fast and just for one day, for one moment, to just be FREE.  But it's impossible.  It's inescapable.  I'm imprisoned by it.  It dictates my lifestyle and the lifestyle of my family.  It wounds.  It mars.  It maims.  I hate it.

I think if I just try hard enough, or be strong enough, or work harder, or longer, or if I was just a better person...or if I did more for the cause, or if I ignored it, it would go away.  But it stays.  On and on and on and on... It's confining.  It's restricting.  It's suffocating.

I want to do what I used to.  Just once.  Go to that party and not worry about food spilling out of my mouth, or choking on my own spit, or dropping my drink because your hand decides to stop working, or tripping because I tell my feet to move and they don't. 

Just once.  Take that trip with my favorite person and not have to worry about packing the medication
and oxygen
and suction machine
and trach crap
and concentrator
and compressor
and emergency information
and sleeping wedge
and ventilator
and extra trach supplies

I just want to GO.

There is no respite from MG.  It. Never. Stops.

If you have a cold, you will eventually get better.  If you get the flu, you will recover.  Even chicken pox or mono or if you break an arm or a leg, you will heal.

I will not.

And that's something I have to live with every minute of every day of my life.

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