February 23, 2011


where do i start? what can i say? 

as i write this, i'm sitting on a plane headed to SF once again to see DR H
graham, the boys and i
far too much time has lapsed between our last visit (end of sept) and this one
far too much time keeps lapsing between my posts
i write to gain perspective on my life,
to make sense of this journey,
this insanity,
this fight,
this nightmare
but for the life of me, i can't make sense of it anymore,
i am just way too exhausted to even try

my emotions run rampant, my internal dialogue washes over me in a steady stream of intrusive, exhaustive, anxiety laden dark thoughts and i try to outrun them. ignore them. push it all away. go away. hands over ears. eyes slammed shut. childish utterance 'na na na, i can't hear you.'
i'd rather not think too hard or too long about life right now
here i sit a 2 and 1/2 hour flight looming ahead of me and few distractions with which to silence the frenzied voices in my head

zone out on solitaire? 
yeah. for a bit.
read the trashy gossip magazine i bought?
too much beiber in it. way too much. darn.
watch taylor sleep? 
well, that could go on with endless monotony.

the last 4 months have been among the toughest we've had to bear
it's been brutal
absolutely brutal
doom and gloom are all around me.
or maybe i should say all i see is doom and gloom
which i know, in my heart of hearts, is not true

it's not ALL bad ALL the time
but it sure comes pretty darn close
some light still exists in the shadows
some things have gotten better
the boys have made progress
i can see it
i just don't trust that it will last

after all, it never has

write about the one step forward?
too draining, too exhausting, too heart wrenching to do anymore
in a heart beat things go from better to worse
one step forward is replaced by a thousand back

contemplate regression as temporary?
embrace progression as a 'sure sign'?
i'd rather be numb to all of it
survival currently dictates the necessity of apathy

improvement vanishes, progress displaced
it is too quickly lost
here today, gone tomorrow,
may be back another day?

who can say for sure?
no one really
after all, this epic fight has no determinable end

incurable beast
stealing life and limb
from the ashes the phoenix rises?
refiner's fire... try me, test me, make me as gold?
i'm too burnt out to care
raked over the coals one too many times

i find that i have lost sight of believing in and hoping for the best
oh, i tell myself that 'one day life will be better'
but i doubt it
i tell myself that 'nothing stays the same'
to which, my inner pessimist sneers, "yeah, no kidding, it just gets worse"
this endless fight has dragged on for nearly 5 years
first me
then parker
then taylor
what if avery is next?
that thought is only an unthinkable heart beat away

be positive?
think positive?
currently foreign to me
right now, i am just way too
worn out
burnt out

i feel weathered... incurably weathered

i am doubtful that it is even possible for me to heal amidst this climate of turmoil and chaos. it takes every ounce of strength just to get through every day. i trudge thru on autopilot, existing in a numbed out state, caught up in a season of grief and trauma and chaos and suffering and needles and IVs and pills and herxing and seizures and barfing and 911 calls and ambulance rides and ER visits and pain. always pain.

utter exhaustion. i scrape by on nothing more than the remnants of adrenaline that every crisis incites. it feels like we get plowed over at every turn. about the minute we start to see signs of improvement, or we venture to consider that the worst must surely be behind us, the bottom drops out and we're launched head over heels into a twilight zone dictated by the bizarre, cruel, unexplainable world that exists within the domain of lyme and it happens

i'm no longer surprised when the loss comes. it will and it does. i'm no longer caught off guard by it but it howls into our lives with such fury that it knocks the wind out of me every. single. time.

i am in a depressed state of being
i am weathered in the worst of ways
i hate it
i hate feeling this way
i hate being this way
i hate admitting it
i hate writing about it
i hate talking about it
i hate being such a downer
but here i sit,
unleashed emotions topple to the page; a mumbled, jumbled mess of in congruent paragraphs strung together with a heap of run on sentences. big words lacking punctuation.

even in my "up" moments;
even as i watch the boys move forward;
even on the days when 1 or 2 or all of us reside in some semblance of wellness;
even when disability takes a temporary backseat to ability;
even when i'm well, i am unwell
uneasiness presses in on me,
restlessness pounds thru my veins
hopelessness reigns supreme
they reside in my gut twisted together as an ever present knot; a beast of a knot that tears at my soul, has a ferocious strangle hold on my heart and mercilessly, unrelentingly chips away at my faith

it has beaten me down
brought me to depths unspeakable

here i sit,
a petulant pessimist, 
here i am,
residing in the darkness of my blackened existence,
here i sit,
surviving in a weathered, withering state
here i am,
in all my apathetic glory still willing to fight

by Creed 

i lie awake on a long, dark night 
i can't seem to tame my mind 
slings and arrows are killing me inside 
maybe i can't accept the life that's mine 
no, i can't accept the life that's mine 

simple living is my desperate cry 
been trading love with indifference and 
yeah, it suits me just fine 
i try to hold on 
but i'm calloused to the bone 
maybe that 's why i feel so alone 
yeah, maybe that's why i feel so alone 

'cause me? i'm rusted and weathered 
barely holding together 
i'm covered with skin that peels 
it just won't heal 
no, it just won't heal 

sun shines and i can't avoid the light 
i think i'm holding on to life too tight 
ashes to ashes and dust to dust 
sometimes i feel like giving up 
yeah, i said, sometimes i feel like giving up 

'cause me? i'm rusted and weathered 
barely holding together 
i'm covered with skin that peels 
it just won't heal 
no, it just won't heal 

the day reminds me of you 
the night hides your truth 
the earth is a voice speaking to you 
take all this pride leave it behind 
cause one day it ends 
believe what you will that is your right 
but me? 
i choose to win 
so i choose to fight 
i choose to fight