November 1, 2010


that calm front I've been trying to keep erected forever and ever is gone
in a million pieces
I’ve shattered
a million pieces
scattered across the floor

I don’t remember much of this past week
there were some warning signs
in the form of physical collapses
guttural screaming
finally falling to the floor
I figured I should ask for help
help from whom?

who can help anyway?
ask God?
it’s awfully hard to ask for help from someone you are angry at and feel abandoned by.
my husband’s overwhelmed
my friends have their own problems
their own pain
they really don’t need to be saddled with a chronically sick deject

I’m blessed by the ones that have stuck around
don’t want to burden them anymore than I already have
lest they just quietly drift away
many already have
which doesn't totally surprise me despite the fact it often leaves me wondering why 

maybe I’m seen as a plague, or too needy, too weak or too strong,
or over-dramatic and attention seeking
maybe my pain is too real, too uncomfortable, too all-encompassing
or maybe they think that tragedy is contagious
or maybe some diseases are more valid, more real, more serious and therefore are more deserved of the effort it takes to come together and support.

do you really not know what to say?
or is that what you tell yourself in order to
to excuse yourself from entering into to my suffering?
after all, I never needed you to know what to say
all I needed,
was for you to just hold my hand
i never expected you to know what to say,
all i expected
was that you would simply be with me in my pain

your silence has been deafening, your retreat was confusing..
what right do I have to clamor for your help, your support anyway?
after all, i'm not the greatest friend around right now
so i count my blessings
focus on what is and not what was or what i wish was
i stuff down my neediness and my over inflated expecations
and i soldier on

through THIS
THIS what?
I don’t even know how to articulate what THIS is


my every moment of everyday
this endless suffering
my own and my childrens
this endless suffering
from which I cannot escape
not even in sleep
haven’t slept in weeks, probably months

not getting a break
endless suffering
not having a vehicle

THIS requirement that I exist in THIS impossible state of being;
as a sick parent
as a parent of 2 sick kids
as a patient
as a caregiver
as a teacher
as a counselor
as a cheerleader
raw, raw, raw
we can do it team
fake it til you make it

THIS oppressive burden
that I must carry all, 
do all 
be all
at all costs, keep hope afloat

after all, they are watching me
they need me to be strong
they need me to cope
they need me to keep the faith
I must do this
I have to do it
i cannot fail them

mama’s can’t opt out
they can’t not be fine
they must never, ever break

mama’s fine
I have to be
because everyone counts on me
to keep hope afloat

I’m fine
I smile
and pretend I’m not sick
or in pain or that i hurt or that i'm scared
or worried i'm fighting a battle I can never really win
i'm fine, I say, a 100 times a day
maybe one day I’ll actually believe it

mama’s fine
kinda sorta maybe not
not when I see their pain
I can’t turn it off
tune it out
make it better
I just absorb it
their pain, their suffering, their anger, their frustration, their hurt, their shattered dreams
I absorb it all
succinctly feel it all
bear it all
intrinsically know there is much that they hide and leave unspoken
when the verbiage comes, it is in a confusing torrent of contradictory emotions
love me
hold me
leave me
back off
hold on
let go
go away
come back
here's a list of 123 reasons why u suck as a parent
you're the best parent in the world
i bleed under the brunt of their twisted tirades of confusion, anger, frustration and questions.
i'm terrified of the abject chaos that decended upon our home, our hearts, our family, our lives, their lives when the natural order of growing up was interrupted by disease. when that "difficult enough under normal circumstances" fight for autonomy and for separation was thwarted by the dependency that occurs when a disease clips your wings at precisely the time in your life when should be set free to fly.

this is all new territory 
our family is in uncharted territory precariously tossed to and fro
and no one feels like they belong
or how to get a long or what to be or what to do or what their role is

everywhere I look there is utter devastation
shattered dreams
mama can’t make it better
they know it
i've given them my best
and it is not enough
never was
never will be

and mama can't protect them
they know it
i don't know if i can live with that

my secret has been exposed
I’m not superwoman
not that I every thought that I was
just hoped that I could pretend long enough to get them through this horror
i am pharmacist
I am patient
I am caregiver
I am teacher
I am councilor
I am comedian
I am nurse
I am friend
I am cheerleader
I am a mind reader
I am wife
I am mother

but superwoman, i am not.

so i just soldier on.
Do more be more
Stay strong don't break

soldier on
thru the pain and exhaustion and illness, and darkness.
gotta keep hope afloat

soldier on
through the weariness, the loneliness, the nothingness

soldier on til you collapse
into an inarticulate stuttering, sweaty heap of exhausted lunacy
traumatize the kids
make your apologies
pull yourself  up
dust yourself off
and soldier on
and keep pretending that you’re fine
accept that you're no superwoman
soldier on anyway.

I am strong. 
I can cope. 
I am fine.
soldier on
your ‘fineness’ right past the point of no return.
the third time was the charm
cumulative effect of running on empty, no relief, no respite, utter exhaustion and  being hit hard with a herx
at least the little ones weren’t home
I don’t remember much
I know I went nuts
how it all happened
the order with which it occurred is unclear
only that I found myself on the floor
making these god awful inhuman sounds
guttural shrieking
grief sobbing
blessed blankness
I saw the broken dishes
felt the yogurt in my hair
then they were there
the cops
the paramedics
and I was cowered in a corner
a puddle of tears curving out from under my knee
snot pouring out of my nose
I figured that I must look crazy
I really didn’t care
I am crazy
take me away
lock me up
and throw away the key

my family would be better off without me 
please make it stop

please let me sleep
give me something to make me sleep
is it so terribly wrong to pray for permanent relief?
I’m shattered
can’t you hear the thousand shards of me tinkling across the floor
somehow, from somewhere, in the midst of the wreckage
they call out to me
in their broken, beyond repair despair
I can still hear their melody of hope playing.
you’re fine
you’ll be okay

but I just don’t know if I care enough to listen anymore
I’m just too tired of fighting this beast in my brain.
i just can't soldier on anymore

this beast has left me shattered
apparently, according to the psychiatrists,  I’m not crazy.
both the non-lyme docs and my lyme doc agree.
I’m not nuts, depressed, bipolar or psychotic.

oh really?
personally, I happen to disagree.
are you trying to play mind games with me?
for years, non-lyme docs have been trying to boil down my complicated medical picture to some sort of depression.
and I’ve been telling them no.
I’m not depressed. I’m not nuts.
I have an infection.

and now
I’m telling them I am nuts
they don’t believe me.

I’m not nuts.
I’m having seizures. the seizures are crazy. but I am not. and they’re being triggered by
that infection in your brain– you know, “that infection” that they still won’t acknowledge I have.

and that
is enough to make anyone nuts.
just sayin’

and if none of this makes sense
or some of it sounds nuts
i wouldn't be surprised
i'm doped up on all sorts of meds.
anti convulsants
anti seizure
pain meds
it's a whole wack of fun. i'm home from the hospital now. cooped up in my room. can't walk straight. sometimes i laugh. sometimes i cry. sometimes i feel normal. most often i don't. DR H keeps calling to check in on me. sometimes i can talk. sometimes i can't. but he just keeps right on talking and he keeps making really bad jokes. somebody get that doc some new material. at any rate, he hasn't given up on me. apparently, i'm not beyond repair. i don't believe him. and i told him that. and he told me he doesn't care what i think...he doesn't listen to crazy people anyway. ha ha.

and did you know that thing 1 and thing 2 came by for a visit last nite? 

and johnny canuck and michael jackson showed up to.

at least i'm not alone in my insanity

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