Category: ME/ CFS

M.E. is Systemic

Symptoms –
Yielding
Spirit
Tampered
Enthusiasm
Mute
Incomprehensible
Challenge

(M.E. or Myalgic Encephalomyelitis is said to be systemic. Every so often it reminds me so I attempt to write through it. Image and poem 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)

If I Were a Kitchen

If I were a kitchen,
I’d want an old-fashioned woman
at my counters – rolling dough
canning pickles, chutney, jam,
homemade pasta sauce,
and every Sunday, a roast.
She’d wear her sweat like a saint,
ignore her aching back –
one practiced hand feeding
her Carnation baby, while
other children flocked to Formica,
hot flesh sticking to vinyl
as they picked at fresh made
sweet buns, the pot on the stove
perpetually simmering.

Or give me modern efficiency –
ninjas and presses, air fryers
and induction cookers –
let the children belly up
to the breakfast bar, chomp
on veggies and humus, while
cook totes baby in a sling,
and preps bone broth,
strains of Baby Einstein
emitting from a propped up iPad,
while a cellphone vibrates
on granite, and the Keurig
spits out Starbucks Pike.

Just don’t abandon me,
piles of unopened mail,
or tossed aside receipts
company for coffee rings
on my counters.
Please don’t litter my surfaces
with rotting takeout containers, or
dishes caked with processed cheese –
don’t leave my stainless steel sinks
stained, spoiled food reeking
in the refrigerator, traces
of late night mishaps curdling
on the floor; absence of familiar
sounds declaring my presence invalid.

(Rewrite of a rewrite. Image my own)

Shifting to Acceptance

In illness, I am passenger –
no matter how venturous
mind’s reach, the raw truth
is that limitations confine

This is not a sentence
for some perceived crime,
but a re-framing – attitude
shifting to acceptance

Choice becomes thoughtful –
time allows for that now –
and gratitude takes hold
in every corner of “I can”.

(Art my own)

Mental-Pause

Where do the words go
when they slip through the cracks
of my mental filing system?

And where is recognition
when words reappear,
no longer categorized
or referenced –
out of alphabetical order –

not even an inkling of recall
as if our acquaintance
is akin to discovery?

(Mental-pause first appeared here January, 2018. This version edited.
Image my own.)