Category: disability

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)

Good Afternoon

Dawn breathes an invitation and Rumi’s words taunt me: Do not go back to sleep. I am loathe to greet the day – not that I despise its arrival, rather that waking has become laborious since the onset of chronic illness. Daughter of a military man, I am conditioned to rise before the sun, have a lifetime of such anecdotes to my credit, however; while the brain is still willing, the body groans, and aches wail with renewed emphasis as the numbing cocoon of sleep loosens. Hours dwindle from the first inkling of consciousness until muscles comply with movement, and I am lucky if I’m actually able to utter “Good Morning.”

Rays, like razors, slice,
invade sleep’s cocoon – absent
winged emergence.

(Good Afternoon first appeared here Sept 2018. Edited for this edition. The poetry form is haibun. I am pleased to report that waking has become easier, and most days I am able to greet the morning.)

Even Ghosts Yearn

Natural light preferable
to artificial – not the harsh
fullness of noonday sun
but softly filtered rays –
luxurious…
inviting

Love too, should be subdued,
gentle as a zephyr –
not mythical, but yielding…
mindful
not worshipful nor boastful
but comforting…
warm

I am waning light
the mistral wind wafting
no longer a force of nature
but smoke, spiralling
vanishing into non-existence

And yet,
even as shadows spread
I yearn – heart
beating true
not lost,
not forgotten,
but withdrawn…
humbled

passion mellowed
by years of constructing walls –
grit and tar –
scar’s long buried
save the limping gait
of a ghost.

(Even Ghosts Yearn first appeared here in July, 2018. Image my own.)

Pain

Pain.

I push against it
challenge it

A warrior intent
on proving
I am…

indestructible
unwilling
to flinch

Convinced
that denial
equals power

Except, it gnaws
at my edges
tears me down
bit by bit

Just as I prepare
to succumb…
clarity

…this is invitation

…surrender is a gift

…pain is passage

I let go
absolve myself
of the need….

(Pain first appeared on One Woman’s Quest II in June of 2016.
It has been edited here. Art my own.)