Tag: living with chronic illness

Day 252 “Discomfort”

I exist
somewhere betweeen
here and the Netherworlds.
a ghost woman,
wanderer
lost soul.

I exist
on the periphery
semi-conscious
semi-paralyzed
inept at
communicating

I exist
reliant on help
and courtesy
and goodwill
and willingness
to do for me.

I exist
disoriented
frustrated with inabilty
afraid
yearning for
home

unable to remember
where home is
or how to get there
or who to call

vague memories:
reasurrances
loving acceptance
strength and
forgiveness

I am cold
body tired
energy spent
trapped in
some-other-verse

trying to send
out a signal
rescue me
find me
I exist.

Believe in Yourself

Brightly clad and bristling,
Ego scrambles to organize,
persuade, and manipulate
while Greatness watches calmly,
a knowing smile on her face.

Knowledge trembles with anticipation,
eager, yet hesitant,
confident in her training,
doubting her ability to perform.
Greatness nods encouragingly.

Judgment resists Ego’s wants,
sets up roadblocks, spews criticism.
Ego reeling at the blows,
views herself anew with disgust.
Greatness is nowhere in sight.

Plans thwarted, Ego recoils
back to the source of her dreams.
Greatness waits at the center
Graciously open to listening.
Embarrassed and disheveled, Ego sits.

“I’ve been a fool!” she blurts,
“I wanted so much, thought I could do it all,
but I was wrong. So wrong!”
Greatness does not comply with this ranting,
Offering only silent reassurance.

Ego calms herself, considering her companion.
“You must have struggled in your time,” she observes.
“Known heartache and disapproval.”
“Oh yes!” Greatness nods,
a humourous twinkle in her eye.

“But you never gave up?”
“No. I did not,” comes the kind reply.
“I do look a bit foolish,” Ego persists
“Just overzealous, perhaps.”
Ego pauses to reflect.

“Knowledge stumbled with self-doubt,
yet you knew that she’d succeed,
is that why you supported her?”
Greatness smiles generously,
her nod implying more.

So focused on perfection,
Ego now sees the fault.
Potential, she realizes
doesn’t not come ready-polished
but with willingness to try.

“I need to make some changes,”
she confesses to Greatness and herself.
“To tone down my outer professes,
and tune up my inner strengths.”
“Believe in yourself,” comes the response.

Day 250 “Sensory Stimulation”

When I was first diagnosed with ME/CFS, my doctor strongly advised against shopping in big box stores. “For at least a year,” she cautioned. Not one to comply, and still in a state of denial about the severity of my illness, I talked my husband into to taking me to a store that offered motorized carts for disabled shoppers. Half way through my adventure, I knew I was in trouble. It was not the distances one had to walk that presented the challenge (as I had naively thought), but the overwhelming sensory stimulation.

ME/CFS affects, among other things, the central nervous system. As I understand it, the nerves are not able to cope with any additional stress, and this includes the sensory input. My therapist defines it for my consideration as the amount of sensory load that my body can handle at any given time. By determining this, I can better manage my progress and avoid crashes.

Consequently, I exist in a bubble – fragrance-free, controlled lighting, minimal noise input, and reduced visual stimulus. I avoid either hot or cold foods, and am overly sensitive to touch. Minimal sensory stimulation has become my norm.

What frightens me is the thought of integrating back into modern life, where the senses are constantly accosted without thought for consequence. From my perspective, it takes a finely tuned nervous system to cope in our over-mechanized, image-popping, aurally-bombarded, scent-driven society. I marvel at those who can manage it, and my heart goes out to all who cannot.

Day 249 “The Deep Pool”

A figure of breathtaking beauty
glides across the center square,
his classic attire announcing success,
his god-like countenance turning heads.
His velvety deep voice hints at an accent,
stirring imaginations and desire.
He pauses every so often to greet another
with warmth and genuine compassion,
but his heart is set on me.

Juxtaposed to my husband,
I huddle next to the storefronts,
sidling between columns
hiding my agedness and homely visage.
I wear my unworthiness with shame
Confident only of the precariousness of this union.

He is taking me to the seaside,
Proudly leading me to the water’s edge.
Reluctantly, I follow
the shimmering lure of the water
sparkling in the distance,
and the broad open beach leering with disdain –
under the blazing reality of this day
the world will see me for what I am.

* * *

The hotel window overlooks the square
and the crowd that has gathered there.
Searching for the source of commotion
I glimpse a woman, shackled by the wrists,
chained to an ox and cart.
Horrified, compelled to help,
I rush to save her, but am too late.
She stumbles just outside my reach
and is dragged to her end.

I reel with revulsion,
My mind racing with confusion,
What crime could this woman have committed;
what sin to commit her to such a vile death?
She seemed such an ordinary woman,
tall and proud, not long out of her youth,
She had the weary look of a young mother,
stern, yet impassioned – the lioness,
protective of her brood –
now the victim of public persecution.

* * *

I stand in a darkened doorway,
a beam of light from the street
casting an eerie glow on the scene before me:
a baby, despondent from unanswered cries
abandoned in its playard
stares at me with deep, black eyes,
and attempts to rise,
raising one hand to reach for me,
then falling back on his sodden bottom.
I will myself to pick him up,
rescue him,
but am wrenched back into consciousness –
it has all been a dream.

* * *

Ego drives in the waking times,
delusions of self-understanding,
control and clear motivations
its steering wheel –
It is only a facade.

Below the surface,
a history of turmoil,
unrequited desires,
and untapped resources
simmers in anticipation,
conjuring dreams to awaken us –
metaphorical mysteries to
tantalize and illicit questioning.

The self is a deep pool,
harbouring a wealth of treasures,
reminding us there is always more to strive for,
inviting us to take the plunge.

Somewhere inside me is unparalleled beauty,
confidence, and grace,
there is merciless persecution –
both victim and participant-
and there is innocence abandoned and neglected.
Somewhere inside me,
this self-defacing identity
has hope of reparation –
and this relenting sense of futility
may uncover renewed purpose.

Water Damage

The rains finally arrived,
accompanied by tremors,
in the autumn of my thirty-second year.

Torrential floods
of pent up fear and emotion,
unleashed for weeks on end.

In my state of brokenness,
I felt the sorrow of
thousands of women –

oppression, rage, disappointment, hell.

It’s been years now,
yet pools of tears still lie,
stagnant, breeding insects,
mutant bugs with segmented bodies,
struggling to stay alive.

I crush them – try to stamp them out,
but they reappear,
unexpectedly, driven
to what purpose I do not know.

I have conformed, cleansed, repented, prayed.

Yet the sorrow comes
in waves of terror,
reminders of the past.

Worry not for me,
but for the children,
whose innocence is tainted
by horrors unknown,
who pay the price
of my victimhood.

Confused, removed, they suffer unwittingly.

Pray for release, for salvation,
pray for understanding and redemption,
pray that we may all, once again,
breathe.

Day 246 The Pilgrimage

A soft-sided, well-worn briefcase sits slouched in a corner closet,
one side agape, a red lanyard hastily stuffed inside –
occupational identification.
A row of black, brown and gray pumps line up beside it,
a thin layer of dust betraying their idleness.
Silent, unblinking a television set recedes into the wall,
flanked on either side by images of smiling faces,
shadows of nostalgia.
Stacks of books and journals rumour
a once scholarly mind.

The woman, to whom all these trivialities once
had relevance is no longer here.

She has been called to another purpose.

Day 241 Going With the Flow

I could cry tonight,
if it wasn’t so futile.

I would weep for all my losses –
not just this moment of weakness

but the well of energy that once drove me
is

dry

arid

sapped.

Shuffling steps
are punctuated
with

stumbles

and my grasp

falters

and with sorrow
I surrender

to rest

until the tide changes
and I am renewed
and life flows again.

Day 240 “Self-Sufficient”

isolated and incapacitated
I am prohibited from partaking
of the influx of information incessantly presented

consequently cut off
from prescribed expectations
dictating costuming and culture

external expressions of acceptance
are sorely missing, suggesting
an overall lacking of self-worth.

Interestingly inverse to such conclusions
is the sudden contentment that arises
from escaping the mayhem

Internal relief overrides dictated performance
surrendering willingly to intrinsic motivation
and renewed self-acceptance.

Superwoman’s Dark Side

fine-cut crystal, silver and gold
sparkle and entice.  the table is laid
for guests aplenty.

savory aromas conjure visions
of sumptuous gravy, delectable roast,
crisp-cooked vegetables, and decadent desserts.

she’d stop to admire her handiwork,
but the children, tired and hungry
and bored with the waiting, tug at her hem.

Waiting.  It is her greatest strength.
Prepare, prepare –
then wait.

They’ll arrive shortly, noisily
full of their days, faintly aware
of the backdrop, happy to have left the babies.

And they’ll sit and be served
and remark on the deliciousness
and gobble up seconds
then push back their chairs
and wander off for a kip
or a smoke

and she’ll linger for a few minutes
picking at her congealed gravy- covered mashed
unconsciously dabbing at the red wine stain on the tablecloth
and marvel at how she accomplished it all
once again
without bitching
without protesting
a trouper till the end

What’s that you say?
She’s sounding a bit like the martyr?

Oh no, you’ve found her out.
Superwoman has a dark side.

Day 238 One Woman’s Quest

I started this blog in 2011 as a gift to myself.  I had just undergone a lumpectomy to remove abnormal cells from my right breast, and was awaiting the results.  Because of the Christmas holiday, I would not hear for five weeks.  Those were five long weeks, and a whole gamut of thoughts and emotions.

Since that time, my husband has been diagnosed with and received treatment for Stage III, Prostrate cancer, and while I escaped the ‘C’ word, I am now confined to my home with ME/CFS.

But life has not been just struggle.  At the same time as I awaited word, I found out that my middle daughter was pregnant with our second grandchild – a joy that never ends!

Nor were these the first challenges that I had faced in my life, just more in a long line, actually.

So why a quest?  What is that a woman of mature age quests for?

Let me try to answer.

I seek a sense of autonomy in my life – to be able to feel that my decisions/ needs/ wants are not overshadowed by the dictates of another, or a past that is always looming.

I want to know what it means to feel truly empowered.  To know, for once and for all, that I have laid the victim to rest and instead, embraced my authentic self.

I want to live life from a place of inner peace; a trust that no matter what life throws at me, I can continue, because I believe in myself.  And in that peace, I want to know what it feels like to live without guilt, need for permission, or a sense of unworthiness.  I want to be able to forgive (myself and others) in order to be free.

I want to be able to breath freely and stand firmly upon this sacred Earth and make a difference.  To engage with life.  To seek understanding and share passion with all people – no exclusions.

I want to live a life that at the end of my time I will want to celebrate, so that my dying words will be:  I did it!

I am not there yet.  As Robert Frost said, I have “miles to go before I sleep”, and so I quest on.

At least now you know what I am looking for, and if at some point you and I should meet in these pages, maybe you could share a little of your wisdom, and I might come closer to finding my own truth.