Tag: Myalgic Encephalomyelitis

Discord

Does illness have a voice,
and if so; is it melancholy,
or dark and dank, divulging
deepest despair, or revealing
a vileness of nature?

Discord creeps along my veins,
disrupts muscles, systems failing
under the oppression –
“Stay strong,” friends counsel,
cannot hear the gathering storm,
feel the heaviness cloaking me.

I am not myself, but then;
who am I? Is disease a mutation
of the original sin – punishment
for fatal sins, or redemption
wrapped as trial – the whispers
gain clarity – I am faltering…

(Discord originally appeared here May, 2019. Image my own. Living with chronic, often debilitating disease, is an ongoing challenge. There is no cure, no end in sight, and yet, we must go on. This is for my fellow warriors, wondering, some days, what it is all about.)

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Rebirthing

It came in the peak of summer
that most optimistic time, when
sunshine equates with health
and bodies glow with exertion
fit and in their prime – it came

with all the fury of a winter blast
harsh and cold and unyielding –
wrestling me from my complacency
annihilating vibrancy, self-definition
de-leafed, rendering me raw, exposed.

I clung to the darkness, blanketed
against the harshness of light,
the impossibility of sound, or scent –
was de-shelled, ungrounded, ravaged
by volatile nerves and misfiring impulses

praying for the certainty of death…
but it is spring that follows winter
and in time, restlessness set in –
the dogged whine of hope willing
my mind to stretch, my body to try

spirit, tired of withdrawal, pushed
against the wall of dysfunction,
bolstered by a shifting acceptance
found roots in an unspoken faith
and I felt possibility, like a tiny sprout

reaching for the sunshine,
ventured out of my cocoon –
still alive! Redefining purpose –
still precarious, highly vulnerable
but optimistic for the return of summer.

(Rebirthing first appeared on One Woman’s Quest II March, 2018. 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.)

Re-de-fine-d

Ask me how I’m doing
and I’ll say “fine”, not
because I’m actually fine,
but because “fine” is the only
socially acceptable response.

If I said that I have been lying
here, for three hours now,
willing my body to move,
that would elicit unsolicited
advice and tarnish my “fine”.

I’d berate myself for breaking
my promise not to moan,
knowing that complaining
provokes a compulsive need
to fix, which just infuriates me

Because my concept of trying –
which is defined by getting dressed
each day – does not match trying
every new therapy, drug, exercise
offered by well-meaning but clueless

others, who may experience fatigue
at times, but have no understanding
of what is is to be exhausted after
something as simple as bathing,
let alone debating what I haven’t tried.

So, ask me how I’m feeling, and
I’ll say “fine” and we move on
to the weather, or the latest
movie must-see, and I can bask
in the warmth of the contact

carry the conversation into the
void of the rest of my day, smile
to think that I still have friends
who accept my “fine” even though
they know I anything but…

(Re-de-fine-d first appeared here February, 2016. Edited here. 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)

The Same, But Broken

Fragility blindsides me –
I am a strong woman,
not courageous
but accepting
in face of pain,
grief,
illness.

Fragility is pervasive –
body fibres stretched
and torn, on brink
of brokenness;
mind overwhelmed,
obsesses, unable to organize
or let go…

If only I could let go.

I am weeping and not –
weeping from frustration
of immediate impossibility;
unwilling to weep, for totality
of loss is beyond me.

Outside these walls,
life continues,
regards me with disgust/
indifference/repulsion –
equality ignores the ailing.

And, yet…

in this state of rawness,
stripped of busy-ness,
I am as any other –

Just a soul seeking
a meaningful existence.

(The Same, But Broken first appeared here December, 2014. This edition has been revised. Art my own.)

Sufficiency

Disability corners me
twixt two directions –
the hurried rush
of ambition’s call
and the gentle nudge
of wisdom settling

Confined to four rooms
I am distanced from –
invisible to –
the weekend warriors
whose self-satisfied grimaces
race by my window

I remember that push –
not enough hours to the day
not enough money to succeed
never thin enough, fit enough
always grasping for more…

Legless and exhausted,
I am disqualified
from competing,
immersed in retrospection,
luxuriating in perspective –

I’ve always had, indeed,
continue to have
everything I need:
a home I can navigate,
the endless beauty of nature
and the care of loved ones.

Abundance, I’ve discovered, is attitude:
recognition and acceptance
that life is sufficiency

(I’ve derived this poem from a post by the same name, dated October 2014.
At the time, I was five months into the losses that were Myalgic Encephalomyelitis.
Image my own)