Tag: Myalgic Encephalomyelitis

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)

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)

Mermaid Dreams

Descending
into the mythical
entranced
spurred by
severity of
current challenge

Call it fantasy
but attempting
movement is
destroying
my passage

I am pulling,
shattering
this barricade
of a life; blue
progressing:
ocean bound.

(Mermaid Dreams was originally written in December of 2016, two years bedridden. Only in the dreamtime was I whole and capable of overcoming. Dreams are one thing I can talk about for thirty minutes without preparation: my challenge this week. Image my own.)