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

JOY? PEACE? HOPE?

i trudged my way through the christmas season this year
in fact, i tried my best to hold it at an arms length away
actually,
to be brutally honest,
i wanted to kick it to the curb

hard to admit
but
important to say
yup, i limped my way through the season of joy, peace and hope
with little, if any, of it

as the month wore on, i found my joy plummeting, my peace non-existent and my hope increasingly depleted. some of it had to do with attitude and some of it had to do with the simple fact that some days just surviving from one hour to the next is a monumentally draining and exhausting battle. so it stands to reason, that i had little time, energy or desire to decorate the house.

and i pretty much didn't

who me? NOT decorate for christmas?

shocking. i know.

 

ok, so i didn't leave the house totally barren,
i resentfully tossed a garland on my mantel
and
halfheartedly hung up a wreath or two
and
i put up my JOY
not the heart kind,
but the made up kind;
the glittery, showy type of joy
when i came across it in my bin of christmas decorations,
i made a conscious choice to put it up
and
it was hard
really, really hard

but i felt like it was important
i knew i was getting mired up in some pretty dark feelings of discouragement and desolation
so, mustering up all my strength,
i put up my joy
and
it looked pretty...
until it came crashing down the very next day

first the Y came down
but with a stiff upper lip, i resolutely hung it back up
the next day, the Y stayed put but the O came crashing down
and
i furiously re-hung the O

2 days later, that stupid O came down again
and
it pissed me off
and
i gave up trying to keep it up
i looked at that stupid hanging ode to joy
and
i thought that's exactly how i feel;
my joy has bottomed out
and i don't have the strength to raise it up anymore

i left it like that for the remainder of the season

and our christmas tree?
not decorated.
shocking
(especially if you "know" me)
not only did it go undecorated,
but
it spent the better part of the month, precariously leaning in a gravity defying tilt with only the bottom branches alight with lights (eventually my dad took pity on it and put up the remainder of the lights - naturally, within days of doing that, the lights began to burn out string by string and our sad, tilted tree looked like it was covered in shadowy holes)

yup.

and guess what?

i didn't care.

not at all.

in fact, it was a pretty close reflection of how i felt
yup
that tilted evergreen precariously stood as an external beacon of my deplorable internal condition
oh i tried to change it
but i just couldn't,
i hung it up
and
it fell down;
i shimmied it up
and
it fell over;
i put up lights
and
they burnt out

and
why was i trying so hard anyway?
after all, my heart wasn't into it, my body was screaming in protest from the effort and my mind told me it was pointless - decorating just felt so fake - like all i was doing was trying to create some sort of pseudo happy bubble of normalcy
and
nothing is normal
i don't even know what normal is anymore
and

joy to the world?
my world is hovering in an abyss of insanity and suffering

i am
discouraged
angry
sad
fearful
traumatized
depressed
and
mad at God
yes, the very God whose son's birth we are supposed to be celebrating

as a result,
my joy plummeted, and my peace?

peace?

well, peace was obliterated by the psychotic episodes that ravage parker's mind. nearly every day, the tranquility of this season of peace was shattered with chaos and heartbreaking, pain-filled screams of

"i want to die."
or
"i hate my life"
and
the resulting trauma of that echoes on and on through our minds and our hearts

during a particularly severe episode,
taylor was put in a position where he had to intervene
and
it was he who had to grab his little brother in order to keep him from acting on a suicidal impulse
and
avery, my folks and mara (taylor's girlfriend) witnessed it all
the trauma, the pain, the agony, the shock of it all
and
it broke down taylor
and
it broke graham's heart
and
it left us all reeling in our own private pain
later that night, i sobbed, alone, on my knees on my bathroom floor, a broken and screaming and questioning sack of bones
this is just too much for any of us to bear
and
it is not easily moved on from
and
i wondered,
is it even possible to recover from living through that kind of trauma?

thankfully, not every day was that terrible. nearly every day was (and is) a roller coaster of this crazy on again, off again loss of lucidity but none since have been quite as severe nor as long lasting as that one was. that happened on dec 20.

christmas eve and christmas day were not free of some pretty intense symptoms of lyme. taylor felt terrible, my joint pain was flaring and parker had his bouts of loopiness (rages and hallucinations) on both of those days. but all in all, they weren't terrible days. in fact, all things considered, that is pretty much the norm here, we're used to functioning amidst that.

i stuffed down my disenchanted emotions and forced myself to "celebrate" - and i did manage to have a good time. naturally, that included some off-beat humor. the one thing that i was super excited about was opening our traditional christmas eve pajamas. i knew harrison was getting a pair and i couldn't wait for the kids to see that. i knew we'd all have a really good laugh at that.

harrison's "one-zies"

towards the end of december and into the first few days of the new year, we all felt a lot better and we made the best of it
and
really enjoyed ourselves
and
made some good memories

we went ice skating

and
to the movies
and
introduced harrison to the ocean and beach

but
even in those moments,

there is an uneasiness that oppressively hangs over me
there is a knot that sits in the pit of my stomach
and
it doesn't let go of me, even when all is relatively calm, even when there is merriment and mirth
there is a constant battle the rages on within me

yes, it is a fight to remain in the moment
to find joy in the moment
and
allow myself to feel that joy
because
it may only last for a minute
and
when it ends, it hurts

it is a fight to keep hope alive on this roller coaster we ride
this hoping that things will get better
for when your yesterday
goes from better to worse;
and your tomorrow
is not better but worse
it is in those moments that hope feels more foe than friend

so i wish that i could neatly wrap up this post by saying that my attitude has turned around since Christmas. or that i started the new year with a sense of anticipation and renewed hope and joy but the truth is i'm struggling. life is tough. this journey is painful. it leaves me with more questions than answers. it hurts. it's left it's mark. it has forever changed us. eventually, i'll see that as a good thing.

Don't be Sorry

I guess you can tell from the first letter of this sentence that it's not Shannon writing. There's capital letters and full punctuation! Hope you can read it!

Sitting here with Shannon. It's Tuesday evening and we're up in our room dripping IV fluids into Shannon. She's crying quietly and I'm trying to figure out what to think, what to say, what to do, how to fix this. There HAS to be a strategy, a plan, a list of things to do to make this better. Someone HAS to come along and say, "here's just what you should do!" That list, that plan, that someone, the rescue never comes. And the void of that sits in my head and screams at me.

When it seems like it's getting better, in many ways it gets worse. It's worse again. Shannon's seizures started at the end of October, and not a lot has improved - maybe 3 or 4 days that she could be up or even out the house. She's been throwing up for nearly a month now, lost about 10 lbs. Seizures are more controlled (by drugs) since they first began but have ramped up again over the past 10 days. Mostly confined to bed, lots of pain. Lots of waiting and frustration. Endless phone calls back and forth to doctors, chasing down prescriptions and waiting for pharmacies to prepare meds that you wonder if they'll actually even help.

Hey, life still goes on even when sickness dictates we don't or can't. Parker's birthday is this month. We had the extended family over to celebrate. Had to celebrate it up in the master chambers (our bedroom). It seemed that not everyone was comfortable with that, but that's where Mom was, and Parker wanted to open his birthday presents. Who would want to miss out on their kids' birthday?

So, is now worse than before? Who knows. I certainly don't know anymore. I don't know if anyone knows. Even her expert doctors.

It seems like an eternity ago "this" all started. "This" is ruining everything. Nothing could have prepared me for "this". I've been at home for the past 4 weeks. My work has been amazing at giving me this time off  to look after my family. But really! What can I do? Run IVs, dispense drugs, drive to appointments, cook dinner etc. All the stuff normal people do except the "look after the sick in the house as the main job". This all consuming sickness that doesn't go away - or so it seems.

Parker has rallied quite nicely over the past 10 days and the Pain Management Team at Children's Hospital is singing full stanzas of "Welcome to Wellness!"  He has made great progress overall and he IS on the road to recovery - but he still faces a marathon of a fight. The ever-smiling folks at Children's Hospital don't have clue what this disease does. Or how it operates. Not a clue. And they've made it clear they really have no interest in learning about it. They have their own "agenda". We've just learned to work with what is applicable- pain management strategies - and politely smile at the BS. We're so sick and tired of trying to explain it to them or to anyone for that matter who really can't be bothered to understand this disease. Parker is not better. He still deals with significant pain every day but he this week he has been able to "do stuff" again. We are glad about that. We haven't wanted to burst his bubble but we did have a frank discussion with him about what happens when he does have a lousy spell again - most likely it will happen. Parker is realistic and optimistic. So are we. He can't wait for basketball to start at school. He's training now.

Taylor has managed to land himself a job at Future Shop. This is a place that I approve of because of my need for electronics. He continues to push through his treatment in own quiet way. That's the way he is. I don't think most of his friends have a clue what he endures on a daily basis. Because of this disease, he's not doing what he would have wanted to do. He has to wait. There's not really a lot of choice at this point.

Shannon is realistic, but not feeling optimistic at this point - again. I don't blame her. She tells me she's sorry. Sorry for what? Who do you blame for this except God? And we're told we ought not to blame God for anything because He knows what He's doing. I get that part, but enough is enough. Enough suffering already.

Have you ever gone to an amusement park? Sure - with your friends. Folks usually don't go alone. It's a lot more fun to go on a roller coaster with friends - so you can scream your collective heads off, to laugh and hang on to each other. TOGETHER, EACH OTHER.

This whole sickness fiasco is like being strapped to a roller coaster that doesn't end. It stopped being fun a long time ago (was it ever fun?), and somehow all your friends have fallen off and they're now doing something different. Some of them have long forgotten you're even there. Some look up once in awhile and offer something, but it's a gesture from far away.

I'm saying that a bit tongue-in-cheek, because in some ways there's some real saints who have tied up their ships alongside of ours during this storm. Really amazing actually. Tying two ships together in calm waters is safe, but throw in some swells, and it gets a bit nasty. In many ways, we're experiencing loss. We've felt like we've lost so much. Because of sickness, we've lost so much of what we thought we could offer to our children, to others, to each other. Because of sickness there's quiet zones in our house. There's closed doors. There's other people picking the kids up from school  instead of Mom or Dad, because they've had to go to another appointment, or because they had to go to the hospital again. There's making arrangements for other families to have our children stay with them because a sleepover at our place isn't really all that realistic. Try explaining that to Avery again and again. But people have been stellar! We're constantly amazed and overwhelmed at the generosity, caring, and stamina of those who are committed to seeing us through this plight.

But I'm tired of this plight. And maybe it's just that right now, it's hard to see clearly. The loss, the ongoing loss, looms larger than anything. There's not a great deal of perspective that I can conjure up right now. Nor can Shannon. I guess I understand when Shannon says sorry. I'm sorry too.

Graham