WEATHERED

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

and 

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,

and

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

but

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

but

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

exhausted

depleted

worn out

burnt out

unwell

battered

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

over

and

over

and

over

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

and

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

and

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

and

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

WEATHERED 

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 

and 

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 

and 

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