Category: disability

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.)

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)

Maybe

Maybe I just needed a new perspective –
like the famed Hanged Man of tarot –
committed to some deep, internal need,
I willed a horizontal shift; landed with intent.

Maybe it is not my legs that are disabled,
but a soul longing to escape the continual
discord of perpetual motion, a never-ending
to-do list of the success-driven persona.

Maybe there is a greater purpose for being
that is not encompassed by outer drive –
a mysterious meaning that is revealed only
in the quiet stillness in which I now dwell.

Maybe I have been called to a personal
pilgrimage – a Camino of sorts – a crusade
of spirit designed to cleanse and enlighten –
the journey is certainly arduous enough.

Maybe it is through acceptance, finally
having released a need to control, move,
achieve, accomplish that I am able to
embrace the true lessons of suffering.

Maybe this cocooning is an act of Grace
demanding surrender before the actual
transformation occurs, and I will emerge,
legless or not, winged and ready to soar.

Maybe, just maybe, this stripped down,
barren existence is not a penance for
shameful living, but a desert crossing,
offering re-alignment: hard-fought peace.

(Maybe first appeared here Feb. 2017. Image 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)