Category: ME/ CFS

Limbo

With each stanza
I strive for an upswing –
idle thoughts leading
to a crescendo…

But exhaustion plagues
my try, and fog colours
perspicacity, so my words
land low, goal in limbo

(Tuesdays, I borrow from Twitter @Vjknutson. Image my own)

What Dreams Reveal

Two decades before the fall
I dreamt of that white house
with black shutters,
entered the dimness
and saw myself –
withered, a straw body

Could I have altered the course
gathered that mummified self
in my arms, breathed new passion
into old bones, stopped
the onslaught of night
of cells freezing
passionless

No.
I walked in oblivion
seduced by false trickery
dim-witted in the fading light
cold, aloof, unresponsive
warnings be damned

Two decades later,
body inert, mind bereft
of hope – I dreamt
of a younger self
so intent on life
that she passed me by.

Some Days

Why am I courting judgment
like an old friend,
popping in unexpectedly?

She overlooks my needs,
barges in reeking
of stale perfume, and
energy-sucking shoulds

I crave the subtle tones of compassion –
quiet whispers over tea –
a gentle pat, words of encouragement

But, truth be told,
I squirm at even this –
hate vulnerability,
hate this weakness on display,
this chronic, fucking disability

Seems I have dressed myself
in judgment’s cloaks,
walk in the pinched shoes
of expectations too tight

No wonder I’m exhausted,
am dying…numbed
to my own drama.

(Image my own)

Too Old?

She is young,
this artist-self
celebrating discovery

He chastises enthusiasm,
this intellect-self, favours
logic over emotions

I use disability as an excuse
Accept intellect’s restraints
Ignore encouragement
Refrain from submitting
Halter progress

Youth has ambition
her paint spattered hands
grasp at opportunity –
her tender heart
emits a joyful tune..

…but age,
having abandoned ambition,
is hard of hearing.

(Art mine)

My Spirit Stands Strong

Progress, seldom linear,
tosses me into unexpected decline,
stranded and incapacitated.

My son with labour-hardened arms
leaps to my side, steadying me
and I feel the fear in his caring grip

My daughter, ever compassionate,
reaches out, eyes filled with horror
as my body crumples onto the bed.

My husband, my oak, seeks to comfort
his voice betraying the helplessness
this futile predicament imposes.

Beloveds, I know that you see me
this dis-abled, non-functioning shell
weakened and sickly, lying on this bed

Do not be deceived-
it is only an illusion –
vessel temporarily fettered

I am in essence, as before
ambitions and desires intact
hold this version of me

Sense the wholeness of my being
the woman I am yet to be –
my spirit stands strong.

(My Spirit Stands Strong first appeared here August, 2015; edited for this version.
Image my own)

Not Dead Yet

There is safety in apart-ment living;
would corral the little ones, declare
responsibility, obligations as a mask
for this self-banishing compulsion…

except that I am lying prone, exposed –
brains spilling onto concrete – shadows
revealing the darkness of my condition,
hopelessly locked in physical inertia.

I am an unwitting contributor to
scientific (and pseudo) probing:
audacious autopsies pronouncing
conclusive evidence of motives.

Too polite (and weakened) to deflect,
I submit, demonstrating complacency,
sacrificing autonomy; fail to assert
that it is I who is taking this life test.

And, by the way, am passing quite
adequately, which defies all rational
diagnosis and prognosis, and serves
to reassure me of ultimate success.

(Not Dead Yet first appeared here June, 2016. Image my own.)

Shoebox Dreams

A simple shoebox, repurposed
with plastered images of dreams –
paper affirmations of aspirations –
shelved and forgotten, its contents

snapshots, faded and torn, remnants
of another time, a different future –
captured when potential was prime
and possibility untainted by illness

This one was retirement – a supposed
celebration – but note how the colour
has drained the cracks obliterating
pride of accomplishment; and notice

how this one crumbles to the touch –
the fragments dissipating even as
my life has dissipated, the image
lost before memory resurfaces, so

much loss when circumstance dictates
direction, overpowers will, and plans
like snowflakes, vanish in the heat
of reality – pain and insult burning

But wait…this one looks promising –
the edges only slightly torn, the image
discernible – could it be that there is
hope yet – a future author I might be?

That’s the thing about times to come,
we fill them with imaginings, and pray,
our hope, like balloons set free in a sea
of unforeseen challenges, and seldom

does the end result reflect projected
plotting, and yet, there is power in
the dreaming, and so I’ll replace the old
with new photographs to store away.

(This is a rerun of a rerun. Still resonates. Image my own)