Vegas Vampire

Envision Vegas – the first time –
adrenaline pumping, palms itchy,
wide-eyed incredulity, and …

the most unreliable, stuck-in-the-mud
relative in tow, and no reservations made;
and while one wants to dive in the other

would rather be home knitting and
listening to bird calls than  traipsing
through costumed Elvis’ – glitzy hotels

are too taxing, so a more reasonable
accommodation must be sought out.
Add to that being stalked by a vampire

whose leering eyes suggest somebody’s
going to lose vital energy, likely soon,
and even though the 24 hour crowds

and lights, and bells, and musical strains
beckon, this party ends up off-the-beaten
track, in a non-neon efficiency – practicality

business number one, and Dracula has
checked into the same room – a guaranteed
killjoy… this is disability on New Year’s Eve.

(Image: www.horrorhostgraveyard.com)

In Desperation

We are seekers,
wholeness our quest –
turning to experts for answers,
praying for a cure

fearful of the unknown;
prefer following over charting
a new course – passengers
positioning ourselves for salvation

grasping at clues, losing
ground, plummeting –
bottom, they say, is where
the healing begins.

We hitch ourselves to hope –
know struggle as a constant –
onboard, compliant, worship
professional advice, motivated;

caregivers are our pastures,
we overlook inconsistencies –
dare not doubt – climb
over obstacles, persevere

through red tape, and
when disease persists and
compassions run dry,
we resign ourselves

to a new course,
will embrace any madness
believe that a new set of eyes
just might turn our lives around.

(Image: betablog.org)

Appearances

Testing social waters –
that cherished state of interaction –
prone to revealing too much, learning

have been homebound, studying life
without a facilitator, now attempting to
penetrate invisibility – see me now?

gathering the salvageable bits –
minimal fragments of a once whole woman –
reaching out, reconnecting – mixed receptions

admittedly much has passed me by –
no amount of homework can undo the stain
of my cluelessness, I am slow, needing a driver

as achievement focused as ever –
would go back to work – my heart space –
bursting with eloquence, unleashing enlightenment

on adolescent ears:  tales of survival,
recovery from the depths of loss, except it seems
I am still growing, the few tidbits I’ve gleaned unusable

must be selective about my memories –
am met with disregard, my story, like a gunshot,
causes others to duck, not listen, lack of scarring

a disappointment for those expecting grand
acts of heroism; scars command respect – visual
metaphors telling a linear story – my journey, marked

neither by timelines nor terminal projections –
origins of disease unknown – defies medical
knowledge, research lacking – I am estranged

who dares to question beyond the trembling
exterior, behold the opportunity that has blessed me,
witness the gift of joy that comes with re-evaluation

when character overcomes strife,
and simplicity replaces frenetic ambition –
the outcomes of enrolment in this life class.

(Image: www.huffingtonpost.com)

Internal Struggle

Onramp for freedom is just ahead
but all considered, I will not push
forward, am fragile, misinterpret
signs.  Add to it isolation – who
can blame me….

Move! Move with the throngs!
Set your intentions, correct and
change direction – take a tangent
even – future is just around the
corner…..

Wears me out; I am shattered,
descending, would rejoin life’s
celebration, be a sister, but this
disability shows no compassion…

Couple with feminism; get ahold
of yourself, move forward – there

is no wrong time – be in support
of something; leap….

This reality is disparaging; in
the aftermath, I have no fight –
lightheadedness sabotaging –
an added foe….

Be independent.  Righteousness
makes a good point of entrance…

Inability to motivate, emancipated,
confused on my own….

abandoning is not an option;
motor!  Want to do the right thing;
come on, turn the page…

…too taxing, paralyzing to
show up, catch up with friends
clueless about ME/CFS….

…don’t you care that people
are being exploited, refuges
fleeing, can’t you feel the need…

impatience possesses; I am
beaten, am legless, spinning

keep pushing….harness strength…

..faint without a stance…

…defy fear…

… desperate…

Pity Party Over Here

Methodical might be successful –
ask for assistance; help granted
pass over fixation;  will not stir
this appalling head to toe disease.

Dependability would be welcome –
I beg for it – but this rodent-like
Illness will not acquiesce, runs
amuck, operates at will – not mine.

I can allude to my needs all I want,
reach out for loving, but perspective
is lacking when I am vertically unable
to manipulate, shaken, appear the joker.

Illness is a trickster – labels me freak,
this vessel’s malfunctioning limits
the broader vision – I shudder to think
this is what life has amounted to.

Language Is Not The Barrier

Bought tickets once for Spain,
planned to escape the fading
autumn golds to find brilliance
of Spanish hillsides, vibrancy
of villages, radiance of smiles.

Succumbed, instead, to illness
a fate whose grip defied urges
to flee, thrust us headlong into
the ravages of a blustery winter
remorseless in its stormy rage.

Only dream now of exotic locals,
of sun-baked vistas and cobbled
streets, of busy marketplaces and
houses tucked behind hidden doors
where mothers gather their broods

Motherhood, I imagine, universally
driven to offer comfort, provide
security, no matter the resources –
a call to protect the inner richness
of the family – places that draw me.

Envision plates of home cooked
delicacies, offerings delightful to
the eyes, aromatic, appetizing, and
likely beyond my ability to digest –
this disease imposing sensitivity.

Travelling is a catalyst for change:
exploring cultures, encountering
residents, inspires reflection, the
magic of communicating without
words – languages no barricade

I am marred now, an ungracious
guest – such is the sentence of
this disability – unable to bear the
disappointment on the faces of
those who would extend welcome.

(Image: www.expanish.com)

This Big Old House

Bought myself a big, old house
with a myriad of rooms; needed
it to accommodate all those I
wanted to please – it’s what I do.

Learned it living in a house full
of children – adults that were
children – do it to compensate
for never having been a child.

Raised my own family, bent
on making sure they had
their space, their autonomy,
they’re gone now, still can’t

quit – spend my days cleaning
up in the aftermath: so much
dirt to launder; need it to be
pristine so they’ll come back.

Bought this old house partially
furnished – remnants of lives
before me – the crumbs of past
denial hardened now, panicked

to imagine what petulance has
been drawn to their neglect,
becoming obsessed about the
infestation, erasing the past

confine myself to the main floor,
ignore the filth on walls – crayon
figures pleading for help – until
daylight reveals truth, and leaves

me no options but to toil harder –
cannot let these patterns repeat,
need to save the innocents –
this work is never done – refuse

to see that I am not responsible
for it all – project rage onto my
spouse (latest in a string of
targets) for the sin of taking

pleasure, when I cannot relax,
(everyone knows how to unwind
but me, Super Woman) feel the
compulsion to flee, but disability

allots me no recourse – thank
goodness for this big old house –
places to hide, be forgotten –
if it wasn’t for the old crone

who haunts my dreams, drags
me out of my spinning misery
forces me to extend myself,
meets me at the edge of calm

where tranquil waters soothe
my inner churning, and where
kindred spirits come to play,
and connections are real, and

I can roam freely, unattached,
until illness brings me back –
reminds me of my limitations –
that I have been eternally lost

in a house with many rooms
aimlessly wandering in hopes
or renewal, lost for so long
that I’ve forgotten how to let

go, and only in my dreams do
I find the freedom to walk away
and reclaim the life that awaits

(Image: bigoldhouses.blogspot.com)

 

Balance

Contemplating new life –
he, gainfully employed,
promotes change eagerly –

years of isolation render me
dubious, aspirations limited
to a cup of tea, fear dining out

his palate embraced by any menu,
mine a complex set of restrictions,
condemned to serial disappointment

undaunted by my disabilities, he
ventures forth, seeks solutions
with godlike inspiration commands

possibility, accounts for idiosyncracies
pursues alternative options, is a master
of ensuring that dreams do come true.

Chasms

Old friend, I would visit you
but this compulsive state of
martyrdom delays our reunion,
then you slip my mind.

You wouldn’t recognize me –
this mask I wear, a product
of the toxicity that I play host to,
puts a lid on my kind-heartedness

I want to be helpful,
but carry a burden of failures
ghosts from childhood home
that plug my memory.

I have hurt so many,
neglected, now lost, family –
these useless ties are shadows
lurking, directing me –

I am sensitive, wanting
to exile the negativity, have been
taught to be considerate
but can’t erase the inconsistencies

Spend too much time
browsing, delivering a fragment
of the torment that lies within
am over involved with self

Really want to be my best
in search of something greater
but today the frustration
is too raw, am at a loss

Old friend, I have reverted back
to dependence, manipulating,
am mentally unstable,
cannot find closure

in all the scattered pieces
all I have to offer are bits
disappointing, really, stored
memories that menace

Believe me when I say
I am working hard, want to start
fresh, have a goal in mind,
have not forgotten you.

but am running out of
options, frustrated, can’t catch
a break, as the distance
between us widens.

(Image from: blobsnbubbles.wordpress.com)

Qualifier

Hurdles line up
before me, am I
at the starting gate?

Who will hire me?
Will I be able to learn?
Can I leave the house?

Each bar set higher,
formidable tasks
to achieve, doubting..

state of dependence,
chronic ailments,
undercut propulsion..

have cleared course
of busy, overworking
professional attire..

have the motivation
to rejoin the race,
but legs lack spring;

picture myself tripping,
tossed, sunny side up,
too outdated to win.

(Image: www.postonline.co.uk)