Tuesday, May 27, 2014

"Promise me that you'll give faith a fighting chance"

I'm incredibly indiscriminate about the music that I like so long as it is authentic and well crafted. 

During an afternoon of indulging in Youtube overload a couple years ago [do NOT get me wrong, I still indulge!], I came across a Lee Ann Womack song called "I Hope You Dance".  The one line that caught me then and catches me now is, "Promise me that you'll give faith a fighting chance."

Faith and action walk hand in hand.  During his 3 week stay, I went from not being able to walk and barely able to stand due to rolling seizures to climbing Twin Peaks [terrifying - damn, folks, put some railings along those disintegrating steps!] to doing a five mile walk from vista point to vista point and a few other points of interest along the Golden Gate Bridge.  His support had a great deal to do with these accomplishments, but the fact is that the climb and the walk each took about a day and a half out of me.  Totally worth it and incredibly educational: stress - both good and bad - are triggers for me. There will be good days and the good days are amazing.  There will be bad days and the bad ones, well, they are pretty bad.

Despite what the neurologist said last year when he refused to refill my anti-seizure meds [thus allowing for the recent catastrophic episode], I now understand that I need to be on meds for the rest of my life.  I may now even require brain surgery due to the hemorrhage and the fact that I cannot feel my feet from the arches forward and that my either suppressed gran mals or overgrown petit mals can go on for days.  And I'm on what I believe is the maximum doseage of Keppra 750MG x 2 a day...which will shortly run out because one doctor doesn't want to renew my prescription due to liability, but the government takes its time, so I have no access to the insurance that I've been responsibly paying into since I was almost 15; I've been at this whole thing since early March, just days after the episode.  

I guess that I'm not SuperWoman, after all!

Before Ben arrived, I engaged an advocate agency to assist me in working through SSI and Disability.  Today, I begin preparing the presentation of my case to potential lawyers regarding medical malpractice.  

The terror of climbing Twin Peaks and the exhaustion of walking the Bridge are apt preparations for the coming months...as was Memorial Day.  I fail to understand how there are so many who need assistance and there is such an uphill battle that should never need to be fought, especially after having served.  As much dignity as I lost during five days of him watching my struggle, I'm somewhat glad for having a witness who can account, in detail, how truly difficult the episodes can be. 

It's frustrating and terrifying on entirely new levels.  Beyond having been actively employed for over 30 of my 44 years, I've certainly never served my country in combat.   I've merely meant to be a contributing and responsible member of the human race.  I intend to do so again.  Asking for assistance feels like a cop-out some days, but even as I type this, I'm willing myself to work through an ongoing seizure; it's been going about 7 hours, so far.  One that would make it hard to get prepared for work.  One that makes me lose my vocabulary.  Or logically understand words coming out of a person's mouth.  Or hold a pencil.  Or type.  Or remember what was just told to me unless I write it down, because TBI can ruin short term memory.  But I cannot write it down in any legible fashion when I'm seizing because seizing can interfere with small motor coordination.

This is probably the most depressing, but honest, post that I have put up.  I do, however, feel that maybe it's better to just say, "Shit sucks" than to keep a stiff upper lip and act as though nothing is wrong. Some days shit sucks, but sometimes, it's not until you open up about that with other people that you get and give permission to move forward.

So.  With faith, I fight and move on.

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