health – Page 10 – One Woman's Quest

A Plea for Awareness

There is anger in dis-ease,
an impotent railing against
the injustice of biological
systems bent on breaking

souls; this relentless drag,
this mournful existence,
it is not pity that we seek,
nor charity that appeases

but answers, pragmatic
protocols, procedures to
dissuade the onslaught
of symptoms, unburden

our suffering – none of us
weak, yet disheartened by
medical abandonment,
many confined in isolation

our embers, seething
beneath bedclothes,
burning behind eyes
that have lost focus

forgive us if we rant,
if our conduct reeks of
self-righteousness, but we
are missing, millions missing

plagued by a condition
long ignored, misconstrued,
dismissed, we are angry
unapologetically maddened

have been blighted by
an illness without definable
diagnosis, pronounced only
by elimination, overlooked

by insurance providers,
disability claims, as if we
have construed an alibi
for opting out of society

if we lash out, speak out
express our discomfort
in uncomely ways, well
then listen, reasoning

guides our hands, our
voices, our rampages –
we are disappointed,
frustrated, unheeded

and very much alive
and individually, and
collectively we wield
our ire as a cry for help.

See us, feel us, find
the resources to seek
for a cure, reinstate
the lives of the missing.

Absence

A year ago, my husband was in hospital, having suffered a heart attack and awaiting bypass surgery. I wrote this in his absence. ( Image from http://www.meredithtowbin.com)

One Woman's Quest

Slippers, perched at night stand,
twitching impatiently,
mark the absence of feet,
cannot appreciate the meaning
of unruffled bed covers.

Abandoned, a coffee mug
bemoans its curdling contents,
complains of thick brown lines
contaminating its porcelain shine,
has not noted absence of hands.

Chair, pushed back from desk,
in partial rotation, sits awkwardly,
commanding attention, disturbed
by its misalignment, has not thought
to ponder absence of body.

House, uncomfortable with silence
creaks unnaturally, loudly voicing
objections to the absence of footfalls,
automated machinery and incessant
rings, beeps, and chimes of technology.

I try to reassure them that the absence
is only temporary, that the man whose
presence so strikingly fills this space
will return, hope they cannot read
the apprehension in my tremulous heart.

View original post

Solitudes

Solitude, I dream
of expansive landscapes,
crave your panoramic
silence, thrill to the ideal
of your boundless sanctity

Solitude, you wrap me
in separateness, strip away
my cardboard walls, tear
at the corners of my instability;
no refuge from the stillness

Solitude, I am smothered
by your starkness, by my
starkness, cries of madness
reverberating through vast
canyons of aloneness.

(Image: serendipityteam.wordpress.com)

Bureaucratic Dystopia

Bureaucratic automatons
privy to personal dilemmas
fuss over delegated tasks –
vessels sans initiative –

policy makers overriding
common sense,
common decency
paper pushers passing
verdicts condemning

downtrodden, unable to fight
whose day-to-day living –
questionable at best –
lacks the necessary survival

guide – procedural forms
dehumanize suffering,
cubby-holed egos void
support, icily authoritative

dystopia is no future construct
no fantastical presupposing
for those trapped in the maniacal
system of disability claims.

(Image: threatquality.com)

Missing Lessons

No point hanging onto past –
education is not preparation
when illness decides to drop in

neither Algebra, nor Social Science
offers clues for solving the equation:
Life minus ability equals: what?

Curriculum based on harsh realities
would instruct how to tie up loose ends,
gather what’s important, remain calm

while filling prescriptions and countless
paperwork; and how to fight for validation
when funding is fraud adverse and society

would as soon forget than support; and
how to continue to battle when good times
are confined to snapshots: other people’s

hopeful beginnings and celebrations; and
how to push on when in the lotto of life
disability is the winning card – no certainty

of aging, vacation days no longer apply;
and how does one grieve appropriately
when no one wants to hear, project fear

and misunderstanding; cannot fathom
the depth of the daily battle – need a
curriculum of their own in compassion.

(Image: www.everydayfamily.com)

Now, A Little About Me

Poetry, the words penned on this blog, have emerged as a gift from the darkness of a debilitating disease.

Three years ago, I was a special education teacher, loving my career, volunteering with the junior girls’ basketball team, and making plans with my husband for our next trip. I had been diagnosed with Fibromyalgia in 2010, but a change in diet and weekly trips for acupuncture seemed to keep that at bay. True, I could no longer participate in the acting group I’d so loved, or play tennis quite as actively as before, but that was compensated for by the arrival of grandchildren in our lives.

Then, in the middle of summer, 2013, I came down with pneumonia, and although my lungs seemed to clear with the prescribed medication, I continued to have breathing problems, accelerated heart rate, and bouts of severe dizziness. I saw specialist after specialist, all with differing opinions, and then, thankfully, my respiratory doctor diagnosed Chronic Fatigue Syndrome.

“Myalgic Encephalomyelitis” is the formal term, my family doctor explained, although most recently she told me it’s been renamed Central Sensitivity Syndrome in an attempt to explain the varying complex symptoms.

By May of the next year, I could no longer drive without falling asleep at the wheel; had lost my ability to do math; was losing recognition of words; and could not climb a flight of stairs. Sitting and standing became incredibly taxing, and at my very worst, I could not tolerate food – ugly sores would break out in my mouth and face, and my stomach would swell painfully.

Social interaction was exhausting, and watching television overly stimulating. I spent hours on end lying in a darkened room in silence. Scents were enough to send my nervous system into overload, and sudden noises made me startle like a baby. I could not concentrate enough to read .

Words were my saviour. Ideas floated around in my consciousness, forming images that I would cling to until I was able to find the words to release them. Poems, like shining beacons of hope, emerged, and I felt brief interludes of accomplishment, as if my life still mattered, as if I still had purpose.

This past year, there has been improvement. I am able to be out of bed longer, and with the help of a homemaker, can even prepare a few meals, and best of all, get out of the house to visit with friends, or have a meal out.

I came across this Ted Talk this morning, posted on Facebook, in which the speaker reveals her journey with ME. An articulate speaker, Jen Brea has become an active voice in the crusade to bring this disease to the forefront of medical awareness.

I invite you to watch Jen Brea.

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)

Party Adverse

Will not catch me gavotting
at a party in the Carly Simon
vein – am reluctant at best,
certain my flaws are neon,
fear scrutinizing attention.

Throw a boss in the mix
and I am all bumble, cringe
with each idiotic phrase I
utter, terrified to implode –
immortalize my inadequacy.

Course, it’s all nonsense –
arrogance really, to imagine
others give me a second
thought, and typically, once
I settle in, I find a groove.

Seems I possess a certain
expertise, have endeared
trust; in fact, in my self –
absorption have forgotten
to prepare my boundaries

protect against the influx
of attention seekers craving
validation or advice from me.
Isn’t this a strange state of
affairs; I the coward suddenly

thrust into such a position,
but such is life – pain begets
compassion; a trained listener
when it comes to issues of
the heart and mind – despite

personal misgivings, I find
a place, am challenged to set
aside imagined criticisms, even
actual betrayals, and extend a
hand to someone in greater need.

Might even be inspired to offer
an invitation – momentarily losing
sight of social anxiety – dress
myself up in empathy and break
bread with another – imagine!