January 15, 2011

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.


4 comments:

  1. I understand your pain, and feelings as you went through the holiday season.I hope you are getting full suport from your husband and family because it is devastating to our immune system if not there.
    What is your current treatment regimen, and is it helping?
    dougy

    ReplyDelete
  2. I don't know what to say other than I am so sorry. This dreaded disease has caused almost hell on earth for those of us living with it. You have one of the most difficult situations I have heard of. I have missed your blog posts because through all of the craziness you have always made me laugh. You have an amazing gift to share your life that many of us don't have. You make me want to become your friend because no matter what you say you can tell you are a fun person. I am praying for you and your family, for healing, for coping,for joy and peace and hope. It is okay to be angry at God. He can handle it. Wishing you the best, until next time.

    ReplyDelete
  3. Jessica,
    thx for taking the time to drop me a line - i am so glad to hear some of my posts make you laugh! that's a good thing! thank you for your prayers.

    ReplyDelete
  4. dougy-
    i am blessed to have great support from a wonderful family. our treatment in a nutshell is aggressive. myself and one of my son are on IV treatment. my other son is recovering with oral abx. naturally, treatment is always changing - in fact, we have an appt with our doc today and will be posting an update on what i expect will be new treatment protocals shortly. bartonella is the biggest issue for both my boys and myself right now.
    hope that helps.
    s.

    ReplyDelete