adversity · disability · life · ME/ CFS · poetry

Spirit Stands Strong

Progress – seldom linear –
tosses me into unexpected decline –
stranded and incapacitated.

My son – with labour-hardened strength
leaps to my side, steadying me
and I feel the fear in his caring grip.

My daughter, ever compassionate,
reaches out for me with horror-filled eyes
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 – that is not me –
it is only an illusion –
a vessel – temporarily fettered.

I am, in essence, beside you –
ambitions and desires intact.
Feel me there, tall and proud.

Sense the wholeness of my being
remember me for the woman I am yet to be –
My spirit stands strong.

(I first wrote this poem in August of 2015, when efforts to sit up and visit with friends caused a collapse.  I wrote it as reassurance for my family that the woman they knew was still strong.  I post here now as a reminder to myself – of how far I have come, and how strong my spirit remains.)

disability · health · poetry · Rants

A Plea for Awareness

There is anger in dis-ease,
an impotent railing against
the injustice of biological
systems bent on breaking

souls; this relentless drag,
this mournful existence,
it is not pity that we seek,
nor charity that appeases

but answers, pragmatic
protocols, procedures to
dissuade the onslaught
of symptoms, unburden

our suffering – none of us
weak, yet disheartened by
medical abandonment,
many confined in isolation

our embers, seething
beneath bedclothes,
burning behind eyes
that have lost focus

forgive us if we rant,
if our conduct reeks of
self-righteousness, but we
are missing, millions missing

plagued by a condition
long ignored, misconstrued,
dismissed, we are angry
unapologetically maddened

have been blighted by
an illness without definable
diagnosis, pronounced only
by elimination, overlooked

by insurance providers,
disability claims, as if we
have construed an alibi
for opting out of society

if we lash out, speak out
express our discomfort
in uncomely ways, well
then listen, reasoning

guides our hands, our
voices, our rampages –
we are disappointed,
frustrated, unheeded

and very much alive
and individually, and
collectively we wield
our ire as a cry for help.

See us, feel us, find
the resources to seek
for a cure, reinstate
the lives of the missing.

 

 

 

disability · life · mental-health · poetry

Resignation

Tried to drop in, visit the past –
hoped to resurrect old passions –
all that remains are intellectual
reserves, in need of costumes
to enact a play written without me;
I’d help out but have neither
the resources nor the physical
ability to lower or raise myself
to such expectations.

It’s all so unnatural, this pandering
to an ideal, this self defined by roles
and education:  this soulless state.

So I caught a train out of there –
boarded before I realized
that in my already off-balance state
the movement would throw me,
fell, cried, met with further coldness
should have taken a bus,
buried myself amidst the nameless
masses, too anxious to signal stop,
would shamelessly ride to the end
sobbing even harder, be expelled
by a driver, hardened by the reek
of human neglect, find myself
at the corner of what was
and a swift passage to nowhere.

Better to accept this stranded isolation –
nearby places out of reach – too weak,
too frail to stand – this place that is home.

 

 

disability · life · mental-health · poetry · recovery

Invitation Anxiety

Social invitations sing
of acceptance, delightful
opportunity to intermingle

for the hale, the rehearsed,
practiced in the choreography
of wardrobe appropriateness

disability cringes – NO!
contrived behaviour suitable
for enacting a script too stressing

compromised memory can’t learn
lines – intellect impaired, not
improv-friendly – RETREAT!

isolation a recurring sentence,
illness the jailor; except anxiety
has replaced physical challenge

only Will holds option’s key –
attire no excuse: tossed together
clothing apt gear for gatherings

pretense overcomes stage fright
a worthwhile role for any story,
especially one notably improved.

(Image: bestfriendsforfrosting.com)

 

 

disability · poetry

The Same, But Broken (Take 2)

(Note:  I am revisiting old posts, trashing the unimpressive, and where possible, editing.  This is an edited version of an earlier poem.  Visit the original here.)

Pervasive fragility
blindsides – reduced
to stretched and torn
fibers – I teeter, mind

obsessed, overwhelmed
I am weeping…and not,
frustrated by impossibility
unwilling to face loss –

cannot let go – life passes
regards me with disgust/
indifference/ repulsion,
I am dispensable, invalid

raw, enraged, strength
obliterated, courage gone,
just a soul, stripped of life
craving meaningful existence.

creativity · disability · dreams · passion · poetry

Nested

Nestled in with childhood truths –
second-hand, missing perspective –
nursing a creeping creativity:
insignificant clarity expanding
measurably, hurried.

Once social, now retreating
papered over failure, have fallen
frigid waves infiltrating, overtaking
chronically pained, over and over
contemplating flight, freedom

voiceless, expressionless, flat
even revelation muted, unmoving
boundaries, discussed, protective
currently crumbling…underestimated
the struggle, the pervasiveness

have considered a military approach
strident restrictions to nullify passions
but I am a weaver, open to uncovering
blessings in failure, employed in soaring,
grounded, yet questing, unsettled

disease is not a repellent for the mind,
objects conjure movement, creatures
undoubtedly defensive, renewal motivated
I am dank, moist, lacking burning passion
in this explosive personal nest.

disability · education · health · poetry

Missing Lessons

No point hanging onto past –
education is not preparation
when illness decides to drop in

neither Algebra, nor Social Science
offers clues for solving the equation:
Life minus ability equals:  what?

Curriculum based on harsh realities
would instruct how to tie up loose ends,
gather what’s important, remain calm

while filling prescriptions and countless
paperwork; and how to fight for validation
when funding is fraud adverse and society

would as soon forget than support; and
how to continue to battle when good times
are confined to snapshots:  other people’s

hopeful beginnings and celebrations; and
how to push on when in the lotto of life
disability is the winning card – no certainty

of aging, vacation days no longer apply;
and how does one grieve appropriately
when no one wants to hear, project fear

and misunderstanding; cannot fathom
the depth of the daily battle – need a
curriculum of their own in compassion.

(Image: www.everydayfamily.com)