
(Written during my bedbound years with ME/CFS)
Isolated and incapacitated
I am prohibited from partaking
of the influx of information incessantly presented
consequently cut off
from prescribed expectations
dictating costuming and culture
external expressions of acceptance
are sorely missing, suggesting
an overall lack of self-worth.
Interestingly inverse to such conclusions
is the sudden contentment that arises
from escaping the mayhem
Internal relief overrides dictated performance
surrendering willingly to intrinsic motivation
and renewed self-acceptance.
(Originally written in 2014. Image my own)
Illness has built
the bricks that bind
has birthed this wall
I am postnataly withdrawn.
If I emerge
it will be armed –
sharp comebacks
I am curious
about the caring
my rage running deep
Can you see it’s outlines –
zones broken out
of the practical
Quieting the hurt?
(Image AI generated)
Nestled in with childhood truths –
secondhand
perspective missing
Nursing a creeping creativity –
insignificant lucidity expanding
measurably hurried
Once social, now retreating
papered over failure
have fallen
frigid waves infiltrating
chronically pained
over and over
contemplating flight
freedom
Voiceless
expressionless
flat
even revelation muted
unmoving
protective boundaries
discussed
now crumbling
underestimated the struggle
the pervasiveness
Consider a militant approach
strident restrictions
nullifying passions
but I am a weaver
open to uncovering
blessings in failure,
compensated by soaring –
grounded yet questing
unsettled
disease is not a repellent for the mind
conjures movement in the sedentary
creatures born of defensiveness
I am motivated to find renewal
dank, moist, lacking flame
in this explosive personal nest.
(Written during my bedbound days, 2017. Edited for this edition. Image my own)
Walking away –
the only solution
I’ve ever excelled at…
…and yet, absence
does not obliterate
that which dwells within
I can pretend that I have nothing
to offer, but life and circumstance
require more of me…
…a challenge to exhume
the remains of my potential…
Will I be up to the task?
There is flattery in being looked up to –
the feeling that someone needs me –
but that is akin to temptation – an ego play
Could it be that acquired knowledge
has merit only when shared;
that we are all here to offer our piece;
that in releasing what I’ve learned,
I will find flow, feel in sync again,
restore my abilities and reignite
a passion for teaching?
Dare I hope?
( I first wrote this poem in 2017, three years after being bedridden with ME. Interesting to go back now and acknowledge that life still did have purpose for me. So grateful.
Image my own)
Thank you so much to Navigating the Change for offering the opportunity. Warning, this article deals with end of life, medical assistance in dying (MAID)
Should I escape these shackles –
manage to re-surface, swim
despite this weakened condition
against the currents of disability,
find myself once again on the
solid grounds of civilization –
will I be embraced with cheers
of victory, or slotted into some
back room, reserved for the fallen,
spoken to in hushed tones,
forever handled at arms length,
an object to be feared?
And, if I manage to fight these
bonds that for so long have
threatened to annihilate,
will I have the bravery to face
the calling that once defined me,
shake off the cobwebs of
disorientation, defy the
certainty of unpreparedness,
draw from the well of past
experiences and rise to
a new battle, proving the
validity of my return?
Or, with freedom, do I look
to opportunity, clear the slate
of former ambitions, rewrite
the pages of my destiny,
embrace an attitude of
rebirth, decide to relinquish
the sword, cut my losses
and redefine a new, gentler
way of being in the world,
less dependent on a system
which undoubtedly propelled
this descent in the first place?
(My art, entitled Abandoned Forest, acrylic. This poem first appeared in 2016, when after two years bedridden with Myalgic Encephalomyelitis, I pondered what would become of me. As part of a support group now, I recognize this same struggle in others plagued by chronic illness. Personally, I eventually found my answer in the third stanza.)
Severity of disease
defines degree of marginalization
Who will enter the darkness;
rub shoulders with despair?
Disability is entrancing
but doesn’t invite engagement
We are mythical creatures,
those of us whom fate has chosen
Passage aborted, movement
encumbered, we fantasize
about normalcy –
to be forgiven, just a day
That we might shatter
our barricades, and bound
carefree into the ocean waves –
like the mermaids that we are.
(Image my own, aided by AI)
Unshakeable blue
I am ocean drawn
willing movement
suspended…
Fears meet me here
at the blackened shore
I want to believe
trust the light…
But legs no longer carry me
and heaven forbid the tide
should bring unruly waves –
drowning would be inevitable
So, I hug the shore
hold my breath
and dream of
a more forgiving blue.
(Inspired by Sadje’s challenge: What do you see? based on featured image.)
A window opened
I climbed through
forgetting…
October’s window
filled with promise,
just beyond the pane
Denial is a weasel
leads me towards
the edge…
Those madmen thoughts:
ambition, self-importance –
life has humbled me,
yet again…
(Poem first appeared on Twitter. Art my own)