that one kid over there

the scars on forearms

shimmering under the fluorescent lights

shining bright scarlet

illuminating white

with each gasp for air

eyes rolled back

tormented ecstasy

insanity is the only safe place

for tongues twisted and forked

lies on lies on lies on lies on lies

legos and lincoln logs

playing jenga through the window

the aftermath of the afternoon

when the monsters come out to dance

to the wailing and screaming

your voice is their heartbeat

whispers to gods

foreign and unknown

they don’t dwell with you

in the hovel of inhumanity

hold the gospels in your thoughts

pray for a salvation

the cynical ghosts your only tie to laughter

where you are, dear child, is nowhere

in the quiet the demons cackle

in the tranquil the liars prowl

in the zen reliving rape and pillage

in the calm the evil crawls

sweet dreams

sleep tight

hope to never see daylight

 

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once upon a time

i was once a girl

never innocent, never carefree

i was once a girl

living and breathing

sometimes hoping, sometimes praying

i was once a girl

now i am a disease

to be avoided

to be locked away

to be quarantined

examined by the brilliant

the brilliant

with the letters

certifying their certainty

the brilliant

with adjectives

clarifying their clarity

to the brilliant

i am a study in oddity

i was once a girl

nervous system in tact

who loved and who desired

i was once a girl

blood carrying oxygen

dreamed of bits of peace

i was once a girl

but that girl is an apparition

of a psyche broken, forgotten, plagued

i was once a girl

who ate the pomegranate seeds

i was once a girl

never to recovery or emerge from destiny

the long slow kiss goodbye

i am running out of addresses

no more places to hide

i knew if i let myself bleed once

it would never stop

if i exposed one bit of me

i would go up in a blaze of unglory

and here it is puddles of blood

the insides of me outside

for all the world to laugh at

rubbed raw with sandpaper

dried spit from passersby in my eye

there are no more tears left

i gave up on me last night

all the grit all the grime all the fight

i packed it in a neat little box

and started the funeral pyre

the curse is no matter how i beg

no matter how much i plead

no matter how much i bleed

i can’t escape

i am glued to this spot

eyes wide open

watching the world watch the freakshow of me

rocks slamming my head

and then the venus walks up and twists my heart

to remind me how sweet death would be

and how far away i am from it

there is no rest for the wicked

pointless test pointless drs

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i went to the dr yesterday to have a sonogram done on my carotid arteries.  the dr thinks that maybe a cause in the falling down/passing out deal.

while getting ready to go, i noticed i was hyperaggro.  i was getting more and more upset the closer we got to walking out the door.  it doesn’t take a genius to figure out why i am feeling this way-i am fed fucking up!  i am losing my faith that this is something that is going away or even something they will label.  i am exhausted w the whole process and dealing w arrogant drs and techs and nurses, undergoing constant stupid tests, being probed, prodded and examined is mindnumbing!  all the while, i am sliding into an abyss of declining physical health i am losing my grasp on my life.

 

i am an active person.  i have good friends, i cook good food, i do good stuff for the places i live.  i tell good jokes, i have a good laugh, i wear good clothes (to me), i have a good partner and a good family life.  i like to go for good walks, tell good stories, take good naps, and have a good night’s sleep.  that is the me.  that is what i do.

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now, i struggle to speak.  there are times i am trying to talk and it is literally incomprehensible.  the words formed in my brain will not come out my mouth, instead it is random grunts reminding me of someone who has had a stroke.  before this whole decline i was doing oral storytelling for kids, now i can barely have a conversation.  at the best of times i stutter immensely, repeating the same word over and over.  even having a telephone conversation is outta the question most of the time.

it is fall, and the temperature is perfect for taking a stroll down the street.  the leaves are turning and the smell that fills the air is intoxicating.  i am not walking and taking in the beauty of my favorite season.  i fall down randomly.  so if i go for a walk i must have a partner who is willing and able to carry me home.  my oldest son can do this, but how do you ask that?  it’s too much to ask for, your baby to carry you home.

even wearing clothes is iffy.  when i leave the house, i have the need to never wear the comfy jammies i run around the house in, and i must always always wear a bra.  this is torture sometimes, and enough for me to stay home so i don’t have the scratchiness of denim or the inside cluster of cotton against my skin.  every weave can be felt.  it is overwhelming to the senses.

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i go to the dr at least once a month, to the gp.  plus tests, plus specialists.  we are holding our collective family breath for the neurologist in a week.  praying silent prayers to any deity who might be listeningImage

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anyone out there-to pleas let the neurologist have some sort of direction in which to steer us!  my family is grasping to hold onto a ray of light barely visible.  my hands can’t seem to grasp it any longer, i don’t even see it.  it just feels like a burden to try somedays.

the part of me that has always fought against everything is dwindling.  old thoughts and desires seem to be creeping into the cracks in my hope.  the idea of getting some relief from life seems more and more satisfying the more i slide downhill.  my cravings for a small respite, some good opiate sleep, is becoming more pervasive and a better part of my consciousness.  i have kept it at bay, refusing to even think about it, refusing to go to the drs i know will give me a shot, steering clear of certain ppl during certain times bc i know what i will be.  a zombie nodding out who doesn’t need to eat or drink or move.  a person who can’t think a thought to completion, a person who loses her voice and desire.   but somedays those things are ripped away from me without my consent, and i am left in pain and in a sea of despair.  somedays i need a lifejacket bc my feet can no longer tread this water.  the fight is running out of me.  i am tired.  i am losing a battle in which my enemy is myself, living inside me attacking me on all fronts, systematically killing my hope and happiness, my faith my desires and my will.  it is not fair to put my loves through another 5 year oblivion, and i know that.  that thought alone has sustained my sobriety this long.  the knowledge that seeing me fail at life gives them reason to falter is all i have left.  i am no longer holding on for myself, only for the loved ones.  hopefully they are enough.  today they are enough, or at least at this moment.  i don’t want to fall again, i don’t want to show them it’s over.Image

a medical licence is not a licence to be a dick

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it is hard enough to have a mental illness.  there is a stigma surrounding it, as though we have a choice or some control over it.  most mental illness is caused by neurotransmitting chemicals being slightly off.  there is no way for anyone to control that.  other mental illnesses are generally caused by trauma to the brain, this can occur at any time.  neuroscience has found that there are at least 7 emotional regions in the brain, some of these can be more sensitive than others; this is caused by genetics, prenatal stress, situations in childhood, etc. no matter the cause, mental illness is not a choice.  it’s a humiliating noose around the neck of the affected.

i see a psychiatrist bc i have major anxiety/agoraphobia and depression.  eli and ted also see the psychiatrist.  we have been without a psych dr for 2 months now bc the guy we were seeing was travelling to the area and his wife became ill so he could not travel anymore.  he was the only dr in the area that would take our state insurance.  he worked out of a clinic twice a week.  it was a mad house to go.  every adult with medicaid who was mentally ill went through this clinic, and there were ppl from all over oklahoma that would wait to see him.  there would be up to 75 ppl at any given moment in the office, usually yelling at their kid or spanking their kid or bitching bc they had to wait.  sometimes we waited for 6+ hours to see the dr.

i called the clinic to find out if they found another dr and they had.  he only works at the clinic on saturdays and sundays bc he has his own practice in the area.  so we showed up at our appointment time prepared for the experience.  we noticed that there weren’t the regular amount of cars in the parking lot.  we got pretty excited about that!  when we went into the office the receptionist said they could not see ted bc he has medicare and they don’t take medicare anymore. ( thanks for letting us know that when i made the appointment….) so it was just going to be eli and i.

it only took about 10 minutes for us to be called back to see the dr, but in that waiting time we saw a woman leave shaking and crying after she had seen the doctor.  i sat in a chair by the big dr desk and eli sat back on a couch against the wall.  the dr started by talking to eli.

“so i see you are diagnosed with anxiety?”

“yes, sir”

“do you do drugs?”

“umm…no”

“i will not prescribe you xanax.  that is what you all want, the xanax.  junkies are the ones who come to this clinic”

“ok well i don’t want xanax, i just want the medication i was on”

“he has aspergers,” i said

“that is not in his chart.”

“he was diagnosed when he was seven by dr mobley.  dr z new that he had aspegers, but he did not diagnose him with it.  it should be in his chart though”

“like i said it’s not in his chart.  do you live  by yourself?”

“no i live with my  mom and dad and stepmom” eli replied tilting his head towards me.

“you are mom?”

“yes”

“i thought you were his sister.”

“o thank..”

“it is not a compliment!” he said raising his voice slightly,” how old were you when you had him? 14?”

“no i was 18 almost 19.”

dr condemnation eyeroll.

eli answered a few more questions.  one was about a medication he has been prescribed for years.

“why do you only take this at night?”

“bc that is what dr z told me to do”

“all of this is what dr z told you to do.  but why did he do it that way?”

huh?  eli and i exchanged glances.  this was weird and really uncomfortable.

“dr z prescribed the medications.  we took it as prescribed.   if you think that it needs to be taken differently we are open to see how that works” i piped in.

another dr eyeroll

the dr told us a long line of why he was a competent dr.  he worked here and there and for so long.  he started this program and that program and pat on the back.  he knows what he is doing, look at all these letters behind his name.  blah blah blah….then he told eli to go into the waiting room.

he asked if my meds were effective.  i told him that i have am having alot of neurological issues that effect my mood, but i think i am doing good despite that.  that i am going to the neurologist next month and we will know more then.  he asked what kind of neurological issues i was having and i told him a few-dizziness, feeling like i am falling, weakness, issues with word recall.  dr eyeroll.

“being in pain all the time is hard.”

“do you take anything for pain?”

“yes.  i take tramadol.  50 mg twice a day.  it isn’t the best but i would rather not be on opiates.”

earlier he had asked me what meds i was allergic to, and i told him.  i also told him that i cannot take medications that work on your dopamine.

“tramadol effects dopamine.  you said you can’t take things that affect your dopamine.  which one is it?”

“umm…well…the reason i can’t take things that affect my dopamine is bc i have major reactions to it.  dr z had me on abilify and then latuda both of which work by decreasing dopamine but it makes me have medically induced parkinsons, and i can’t take them”

“that doesn’t happen.  you can’t have medical induced parkinsons” loud voice then a laugh while he shook his head in that ‘this stupid ass woman’ way!

“no but it did happen.  that is what happened.”

“then you should stop taking your tramadol shouldn’t you?”

i was dumbfounded.  i felt ashamed and belittled.  i couldn’t say anything bc i was going to cry.  i just looked down and tried to find patterns in the carpet.

“what do you want me to prescribe for you?”

“my general practitioner has already prescribed for me for this month, but i will be out of meds on the first.”

“then why did you come here?”

“we need a psychiatrist to help us…my gp doesn’t know enough about mental illness.  we just needed to reestablish.”

he started to lecture me on things, but i was shut down by that point.  i felt like running out of the office.  i felt like punching him in his dr face!

amy usually comes to all of my dr appointments.  she realizes that, while i can advocate for others, i have a hard time advocating for myself.  i know that i am not really able to judge my mental state.  if  i am being irrational or doing things out of character i am not going to be aware of that.  amy will realize it.  we know the value of an advocate.  i am an advocate for my kids, ted and i was for my sister (who has bipolar and has delusions, which she cannot report bc to her they are real) but a sick mind doesn’t know it’s sick, so amy can help by telling the drs what she has seen.  if i were a dr, i would appreciate this sort of thing bc it would make my job easier, but most drs dislike health advocates.  when they called us back into the dr’s office this morning, amy was using the restroom.  they wouldn’t let her come in. so i was stuck alone in a room with this man who was demeaning and rude and mocking me.

i walked out feeling like a piece of crap, like a drug seeking loser.  this psychiatrist, a specialist, made me feel like i had made a conscious choice to have a mental disorder.  i know that is not the case.  i know that i am responding to things bc my body is sick, taking most of my energy to just wake up and deal with constant pain.  but i was humiliated.

we are going to start calling around to find a new psychiatrist that will take our insurance.  that means we will have to drive at least 45 minutes once a month to see a dr.  i am willing to do that so my family and i don’t have to deal with a dr who is going to belittle and debase us.  i am also writing a letter to the state board of medicine to file a formal complaint.  there were medical issues i needed to discuss with him, that he had made me too uncomfortable to address.  that is not ok.