Descending
into the mythical
entranced
spurred by
severity of
current challenge
Call it fantasy
but attempting
movement is
destroying
my passage
I am pulling,
shattering
this barricade
of a life; blue
progressing:
ocean bound.
(Mermaid Dreams was originally written in December of 2016, two years bedridden. Only in the dreamtime was I whole and capable of overcoming. Dreams are one thing I can talk about for thirty minutes without preparation: my challenge this week. Image my own.)
I weave words
with alacrity –
on a mission
Foreign forces
infiltrate brain
cells scrambling
Must write
till ability wanes
thoughts hang
Disconnected
brushed away
like cobwebs
(Tuesdays I borrow from Twitter @Vjknutson. Image my own.)
Letters jostle for position
back-up
attempt to regroup
get detoured
Frustration builds
and obstacles
pop-up –
cognition faltering
Circuits are jumbled
pathways rerouting
patience exploding
expression lost.
Word recall
out of order
Word recognition
under construction
Is there an exit
from this nightmare?
(Brain fog affects cognitive functioning. I first wrote this piece in 2015 and the condition continues today – one of the reasons I keep writing. I resubmit it here for Ragtag Community’s prompt: jumble. Image from personal collection.)
She’s not in the kitchen
presiding over preparations,
thriving amidst the chatter,
tutting away thieving fingers.
She’s not in the classroom,
mastering subjects,
upholding order,
ruling with charitable hand.
Nor is she at social affairs,
head bent in rapt attention,
smiling cordially,
gracious with compassion.
The Queen is missing –
the poise and composure
that marked her carriage
has vanished without a trace.
Don’t ask the old woman
tottering down the lane,
stooped and stumbling –
she’s not all there.
Her mind’s a trickster,
her ego a petulant child,
unwilling to concede wrong –
she’s merely the court jester.
(The Queen is Missing first appeared August of 2015.)
Caught relaxing –
ignorant sleep,
treacherous faith
beneath security
salvation preyed upon,
skin-crawling danger
support ill-gotten
rescuer threatening
outcome beastly
misunderstood
I am off-work,
harassed
refuse light
failed legs
kicking back
enemy projects
feigns warmth
damage protected.
I’ll compromise
exert smiles
exit and breathe.
(Today we attend a memorial service for a friend. My former co-workers will be in attendance including one who tried to stir up trouble for me in my absence. Grant me strength. I’m linking this up to Reena’s Exploration Challenge which is compromise.)
Sleep comes in great fistfuls
will not let me shake it
tosses me in seas of dreams –
a first love, teenage antics,
a mother’s toil – I am pulled
under, tossed like a rag-doll
a soft breeze like a mindful
caretaker, caresses my skin
reassures me with her lulling
sweetness, forgives negligence
of household chores, promises
all can wait; I succumb again
Anxiety, like fog, closes in
suffocates, I gasp, fight for air –
this disease so pervasive, lungs
spasm, panic multiplies; help!
Tests, drugs – all speculative,
experimental – symptoms persist
absent treatment protocols, a cure;
so much ignorance, uncertainty
Lie down, they say, refer me
to psychology as if immobility
and exhaustion are tricks of mind,
an overactive emotional imagination.
I am sentenced to seclusion, sensory
deprivation, muscles, nerves, immunity
all defunct, cells failing to produce energy –
a lifeless, inert blob, cognition failing.
But I am not alone; millions of others,
also missing, untreated, abandoned –
but not giving up – Can you hear us?
grief oozing from our pours, unwilling
to be further shamed into silence –
our suffering may be invisible, our
voices weak, but the warriors among us
are beginning to speak – please listen!
(ME/CFS is a debilitating disease that affects millions worldwide. Absence of funding restricts much needed research. Not enough is known about this disease to help the many bedridden or homebound. It affects people of all ages, including children. In Canada, there are no treatment options, and often medical personnel are not educated about the disease, which can lead to harmful interventions.
Jennifer Brea has become the voice of ME/CFS due to her recent documentary, Unrest. She can also be found on TedTalks, discussing the implications of having a disease not recognized in medical circles. Unrest is an awarding winning documentary that sheds light on this disease. It is apparently being shown on PBS Monday, January 8th. It’s also available through iTunes.
Please watch. If you or a loved one suffers from this disease, or any other mystery illness, the film may just trigger new understanding. If you are a medical professional who has not heard of the disease, the documentary is very informative.)
(Originally posted May of 2014, this poem describes the early days with ME/CFS. This is an edited version of the original.)
Rain pelts against my window,
cheered on by a relentless wind.
Inside, I lie motionless
on my once-yearned-for
now resigned-to
bed.
Target has those things you’re looking for
texts a daughter, pic attached.
Exactly what I’m looking for
but a million miles away
when energy fails me
Instead, I give in to the fingers
of sleep, pulling me in –
blessed unconsciousness,
oblivion.
A door opens below me,
footsteps, a voice:
Do you need anything?
I don’t respond,
too weak for words.
Do I need anything?
The question reverberates
through mind…
emotion…
body…
comes up empty –
what could I need?
too much
nothing
Rain abates, wind subsiding
and a brief ray of sun
brightens the room –
a promise
of spring
of new beginnings,
and I think:
I need clothes
but clothes means shopping
and shopping means energy
and the cycle continues
and still I lay
unmoved
Then you enter,
an offering of tea
and a gentle word
and with renewed momentum,
I shift to make room for you,
and it all comes clear –
You are what I need
You are my must-have.
(Image: heartofwisdom.com)
Used to be a teacher –
socially respectable –
graded papers, set
lesson plans, passed.
Now, locked out, I am
tossed like dirty laundry
heaped atop the sullied
citizen pile – a dirty,
tangled mess in need
of cleansing – those
indistinguishably ill
usurpers of public money.
Once, knew definitively
the standards set by
ministry guidelines,
curriculum based goals
now, am dispossessed,
mind lost, unable to focus
on details, angered by
trivialities, a nonentity.
How I miss the certainty
of rubrics, daily routines
set by hours of sweat –
sweet organization.
I am the student now,
submerged in this disarray
of emotional churning
unsolicited learning
environment in which
achievement is seldom
honored – no A’s awarded
for surviving life tests.
(Image: nutleywatch.com)
Yesterday, I decided to pretend that the disease I suffer is not present. Just for one night I wanted to take a break, be normal, live life. I am not talking big risks here people! I am just talking a night of t.v. watching like in the old days, before I got sick.
“I’m still lying down, right?” I convinced myself, hunkering in under the sheets. “What can it hurt?” That was 7:00 p.m. At 11:00, I turned off the noise and distraction and retreated into sleep.
3:00 am the first repercussion hit me – constricted airways, choking for breath. I staggered to the bathroom and my inhaler, then tried to go back to sleep.
No deal. My overstimulated brain was locked on wired – replaying the details of the shows I’d watched over and over, like an ongoing, unsolvable debate.
I got up and made myself tea, and noticing a pronounced weakness, allowed my walker to support me. I had overdone it.
I eventually fell back to sleep just after dawn, and now just coming up to noon, I have managed to get myself dressed.
Why is it so hard for me to learn this lesson? My body/ mind/ emotions/ spirit have, through the vessel of this disorder (ME/CFS), sent me a clear and profound message:
P..A..U..S..E..!
So life, forgive me for opting out of participation right now – I am taking a sabbatical.
One Woman's Quest 