aging · brain health · ME/ CFS · poetry · writing

Letters and Words

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.)

aging · art · change · creativity · disability · health · Humour · poetry · writing

The Queen Is Missing

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.)

 

culture · life · ME/ CFS · poetry · relationships · writing

Uncomfortable Compromise

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.)

 

education · health · ME/ CFS · poetry

#TimeForUnrest

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.)

disability · Family · life · Love · poetry · relationships

Must Have

(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)

disability · dreams · health · life · poetry

Irony

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)