me/cfs – Page 5 – One Woman's Quest

Re-de-fine-d

Ask me how I’m doing
and I’ll say “fine”, not
because I’m actually “fine”
but because “fine” is the only
socially acceptable response.

If I said that I have been lying
here for three hours now trying
to will my body to movement
that would elicit unsolicited
advice and tarnish my “fine”

I’d berate myself for breaking
my promise not to complain
knowing that complaining
provokes compulsive needs
to fix which makes me angry

Because my concept of trying –
which is defined by getting dressed
every day – does not match trying
every new therapy, drug, exercise
offered by well-meaning but clueless

others, who may experience fatigue
at times, but have no understanding
of what it is to be exhausted after
something as simple as bathing,
let alone debating what I haven’t tried.

So, ask me how I’m feeling, and
I’ll say “fine” and we can get on
about the weather or the latest
movie must-see, and I can bask
in the warmth of the contact

carry the conversation into the
void of the rest of my day, smile
to think that I still have friends
who accept my “fine” even though
they know I am anything but.

Soul Stalker

Downy blankets of white settle softly,
Nature gratefully submitting to slumber
as the Earth bids a seasonal adieu.

Inside, my body craving hibernation
curls into layered bedding, draws shades
against the snowy scene, wills respite.

My soul, a cat, lulled by the miracle
stretches wide paws, arches, ready
to discover some mystic wilderness.

She is primordial, a snow leopard,
camouflaged, elusive, a silent stalker
instinctively hungry for nourishment.

Weakened, I yield, certain she will prey
on this near lifeless flesh, leaving me
bloodless, hide-less: a mere carcass.

Then I shall lay down in the frigid warmth
of winter’s illusion and surrender rotting
self to the Earth’s core; pray for rebirth.

Salvaged

Delegated to the back room,
I am marginalized, invisible,
employ-ability in question.

I am a peripheral observer,
self-conscious of my status,
disintegrating at the edges.

Watch as relationships form,
people engage, socialize, find
purpose, ignore my presence.

Desperate, I grasp at meanings,
decipher holes in conversations,
measure lacking in interactions.
Ennui drives introspection –
a terrifying abyss of endless
confrontations and shortfalls.

Unable to bear the tedium –
madness threatening – I push
forward, reconsider stock

determine redundancies,
discern detrimental agendas,
am inspired to make changes.

Experience bears fruit, I can
salvage the situation, trim
excess, purge the sedentary.

Ideas flood, passion igniting,
prospects are not lost – creativity
fuels a new sense of belonging.

Run!

Spent most life running –
obligations stepping stones
spanning the endless abyss –
desperately seeking bridges.

Inescapable is darkness –
pathways crumble, falter,
delusions disintegrate –
I have fallen, am falling

Alone. Starkness blinding,
rawness of soul exposed,
like an inverted negative,
surreal, unexpected truth.

Unanswerable questions arise,
I breathe, am not received,
no reflection to validate me,
matter suspended without

purpose, so fleeting, fickle
I am shadow, shelved,
inconsequential, nothing
silence painfully throbbing

riddled by abandonment –
victim or perpetrator – God’s
design or fantasy’s failings:
either way, I am cast aside

endlessly floating, undefined
losing grasp, untethered,
hopelessly longing for legs
that I might run again.

Sedentary

Spent the day in prone silence –
first as a human pin cushion
in the naturopath’s office –
motionless except my mind
pouring over Christmas plans.

Later, beside my granddaughter,
three-year-old arms akimbo
daring not to budge, until her
innocent breaths deepened –
my body burning to move.

Now, the window of energy
closed, I lie here with you,
no longer motivated to sort
or organize, my brain spent –
mindless poem on fingertips.

Rehabilitation Scheme

Disability wants me back to work
(rehabilitation they have promised)
and since I’ve given up my car –
driving is difficult when cognitively
impaired – I’ve decided to take a bus.

It’s a school bus, which is fitting,
although much harder to drive
than I had originally anticipated,
and since I’ve been assigned to
a new school, parking is a problem.

This is an inner city school, so no
parking on site, and if they expect
me to park at the back of some lot
across the street, they are sorely
misinformed about my capability.

I cannot walk that distance, and
come to think of it, I will not be
able to maneuver through the
hallways of this three-story ark –
we are not off to a good start.

I pull in front of the school – begin
my return by breaking rules – and
head for the office to explain my
misguided efforts and question
the sensibility of this whole idea

when I suddenly realize that even
before I’ve entered the classroom
I’ve just abandoned a whole load
of students, who are undoubtedly
wondering where their bus got to.

This rehabilitation scheme has
proven to be a bigger fiasco than
any extravagances I have allowed
myself – and paid for – since falling
ill – thank god I’m only dreaming.

To my insurance company, I say:
thank you for being there, and the
support administered monthly, and
please be patient – I will voluntarily
return to life when feasibly plausible.

Juxtaposed

Muted shades of browns
and greys
define my black and white
existence
while succulent pink skies
explode in my dreams: neon
green vibrancy beckoning,
enticing – rude reminders.

My life is measured in
handfuls
one visit a week, two
outings
three phone calls, seven
minutes
for standing, fifteen for
sitting.
I dream in exponentials
multiples of numbers,
unlimited possibilities,
combinations, outcomes.

I live a stripped down
dirt floor
one room, structurally
unsound
solitude, boundary-less
instability
and dream of concrete
cities, institutions housing,
nurturing, protecting, life
with abundance – crowds.

How do I resign myself
to this juxtaposed reality,
fill in the missing gaps,
find sustenance in a void?

Acceptance is shattered,
faith
undermined, storm clouds
intensifying
threatening cyclones of
chaos
blacken the horizon, no
bottom
in sight to ease this soul.

Only in dreams will I find
my legs, run with mercy,
embrace freedom, and
know fullness of spirit,
fueling one more day
of survival,
until I am once again
whole.

Disability’s Rant

It’s not that I’m not open
to new perspectives –
I am aware of daylight
beyond these walls –
conscious that mine is
not the only viewpoint.

It’s just that the inflexibility
of this existence is unrelenting,
and I have come to see opposing arguments
in the bleak morbidity of aging –
am having doubts about the willingness
of skilled, principled, professionals
whose rigorous platforms require
energetic, sheltered, regard.

I am lacking confidence
in my ability to articulate –
sanitizing personal inkling,
disinfecting institutional
impotency.

What lesson have I signed up for?
How is it I’ve found myself,
mired in sterility,
shrouded in grey,
an unwitting student
in my own life?

Adrenal Spin

Death has visited us,
and subsequently,
visitations, and
a funeral.

Ours was a loss
long anticipated,
suffering relieved
by passing on.

Dutifully, I planned
to accompany Mom,
show support, and
represent our side.

Disability answers
to its own drum,
and this added stress
inflamed the beat.

Attempts at resting,
met fired adrenals –
locked on fight/flight
as my mind reeled

conjuring images
of confrontations,
inquisitions, and
judgments, then

raised unrelated
issues unresolved,
spinning webs,
speeding pulse

I spiraled into
a perpetual abyss
of wiry panic –
release unattainable.

Disappointment
my hangover,
as predictably,
I am a no show.

In Wisdom Released

The officiousness of your interrogation –
tones of authority (masking ignorance) –
unnerve me, conjuring memories
of past violations; re-victimizing.

Proclaiming concern whilst fishing –
probing deviations; implying blame;
I am aroused to counterattack;
dis-abled, not dis-armed.

You think I chose this abduction,
wittingly willed myself crippled,
invited helplessness: laid down
and tolerated this life-invasion?

I find your tactics bullying, bordering
dubious, and revert to adolescence –
a surrogate adult, hyper-vigilant
in my self-protective backlash.

Your judgments are incredulous,
like a petulant child you protest
efforts to quiet unwanted advice
insist upon your righteousness.

If I was able to dislodge this ball
of stifled rage, I’d educate you on
the differences between support
and impertinence – but I am tired.

Strong-armed into submission,
I am left raw, newly battered,
maliciously wishing retribution,
cold-shouldering instead.

Is it the precariousness of current
suffering that has ruptured caring
or present reality that has shattered
the pretense of so-called friends?

Repercussions of confrontation,
(vows suddenly lacking promise)
weaken already tenuous success,
undermine self-actualization.

I only wish you’d understand that
although life has raped me, I am
stretching my wings, awakening,
cherishing, for once, self-worth.

In my new-found sensibility, I will
re-evaluate, and re-value meaning,
discern and select empowerment,
embrace (and reject) relationship.

Infirmity, you see, has advantages –
obliging new perception, discounting
material trickery, retiring innocence-
wisdom gained a just rebuttal.