Category: disability

Paper Pushing

I am contributing!

Are these lessons not
abundance – success?

Authorities are dissatisfied;
want me back in the game,
insist disability has an end –
analyze me to depletion
their plans shutting me down,
unforgiving –

Encouragement is called for,
and hopeful help,
something to prod progress

This bureaucratic tapping
turns on me,
creativity breaks down.

 

Contracting

Problematic situations
invite expansion – ego
near the point of torment

I am outcast –
newcomers fail to understand –
this missing motor

so I retreat –
into distraction
fail to reveal
caregiver

left to seek
scattered connections
self-absorbed

needy, settled
idly moving towards
desolation

abandoned on the edge
of initiation –
ego contracting.

Anti-Social

Murmurs from the past –
tied to a former identity –
question my social absence

I have divorced that life,
that self, and yet, memories
dangle, challenge my validity

Once facilitator, now I shy away
hidden behind the curtain of illness
could offer suggestions for gathering

have a repertoire of ideas, stashed,
no doubt out-dated – so much of life
having surpassed me, even old selves.

(Photo from private collection)

Must Have

(Originally posted May of 2014, this poem describes the early days with ME/CFS.  This is an edited version of the original.)

Rain pelts against my window,
cheered on by a relentless wind.
Inside, I lie motionless
on my once-yearned-for
now resigned-to
bed.

Target has those things you’re looking for
texts a daughter, pic attached.
Exactly what I’m looking for
but a million miles away
when energy fails me

Instead, I give in to the fingers
of sleep, pulling me in –
blessed unconsciousness,
oblivion.

A door opens below me,
footsteps, a voice:
Do you need anything?
I don’t respond,
too weak for words.
Do I need anything?

The question reverberates
through mind…
emotion…
body…
comes up empty –
what could I need?
too much
nothing

Rain abates, wind subsiding
and a brief ray of sun
brightens the room –
a promise
of spring
of new beginnings,
and I think:
I need clothes

but clothes means shopping
and shopping means energy
and the cycle continues
and still I lay
unmoved

Then you enter,
an offering of tea
and a gentle word
and with renewed momentum,
I shift to make room for you,
and it all comes clear –
You are what I need

You are my must-have.

(Image: heartofwisdom.com)

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.

 

 

 

Lost Directions

Partnered once with compassion,
believed in the power of human
touch, dedicated myself to caring,
certain I’d found my body of work

time and circumstance intervened
I drifted, lost in an eddy of confusion
my partner and I separated in the fray
but life moves in circular cycles, and

I revisit that work now, wonder if
parts of it are salvageable, viable –
fragments of that former time now
seem so outdated, irrelevant, what

if I let compassion drive, put ego
in the passenger seat, would she
not steer us down one way streets
against the flow of traffic, rattle

my elusive confidence, jeopardize
this vulnerability; I have no trust
in processes, lack the assurance
of youth’s glory, would not survive

the scramble; time and circumstance
have intervened, circular lines bypass
in spirals; we are not meant to go back,
I need to breathe and stop this grasping.

(Image: scorpyorising.blogspot.com)

 

 

Could It Be?

Walking away is 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 further 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 is that
not akin to temptation – an ego play –
could it be that the knowledge I’ve
acquired has merit only when shared;
that we are all here to do our piece;
that by releasing what I’ve learned
I will find flow, feel in sync with life
again, restore my abilities and reignite
a passion for teaching?  Dare I hope.

(Image: http://www.thebalance.com)

 

Dear Legs

May have been remiss
in expressing appreciation
how you carried me
all these years – stride
confident, pace swift,
head turning grace –

we wobble now, you and I,
uncertainty in our strength
stilted soldiers forging against
a tide of contrary currents
tentative, yet determined

visions of better days amuse
memories of nights spent dancing
getting down with disco, and
days spent swimming laps
prepping for provincial meets

we were champions, you and I
beauties taking on the world
by leaps, participants in a race
against an indefinable foe
believers in a destiny that
was not defined by limitations

I may have been remiss
in expressing my appreciation
hope you now know that
each step to me is precious,
that every time you hold me
upright my gratitude is sincere

there is world yet to discover
and time at hand, and you and I,
dreams intact, still burn with a passion,
hear the beating of an inner drum
rhythms calling us to dance –
should life give us another chance.

(Image:  bareuk.co.uk)

 

Application Submitted

Eager, I am, but limited,
somehow stuck in the past,
revisiting old disruptions –
as unmanageable as before –
Why do I seek validation there?

Vow to write a solution –
end up re-committing –
am I growing extra skin?
naiveté blocks me –
am fascinated with fame

Want to believe I am magical,
possess gifts that inspire, but
I am no more than a circus act,
possess the skills to mesmerize
only the young, uneducated

lack the resilience to adhere
to protocols, abide rules –
destined to repeat mistakes,
easily persuaded to take on
the guise of others – no matter

how poor the fit – will don
unsupported risks, expose
insecurities – for sufficient
flattery – have no boundaries
to counter this need to belong

I am principled, but socially
awkward, have prayed to
a higher power, proposed
promotion – need approval
to make this fractured life work.

(Image: bellapetite.com)