living with ME/CFS – One Woman's Quest

What Future?

Uplifted by invitations,
cherish the extended
kindness – crushed by
the inevitable no that
follows – limitations
a sad reality – energy
restricted to one or
two tasks, no more;
just thinking about it
exhausting enough.

What road lies ahead
for those of us cut down
too early – abandoned by
our bodies, left out of
life – while others veer
towards celebration,
vitality, shall we just
drift aimlessly, blood
and flesh dissolving
into the cosmic river
of being, imperceptible,
undefinable, forgotten?

(image: hdblackwallpaper.com)

Isolation’s Hold

Disability covets isolation, this
stripped-back, box-like state.

Rustic serenity, with breathing
room would be preferable, but

nostalgia creeps in and lack of
self-worth leaves the door open

to unwanted visitors, phantoms
of former torments, nondescript

invaders targeting the lonely,
misconstruing lack of health

for neediness, preying on weak-
hearted, presuming incapability.

I am unwell, not unwanted, effort
to protest ignored, I grow wary of

fellow travelers, am vandalized by
nightly attacks, attempt to reach

out, aim for strength, logic, clarity,
dial-up past abuse instead, cannot

fathom the purpose of unsolicited
persecution, grasping at isolation.

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
brain 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.

Seeking Release

Days confined to a four-walled cell
morose gray skies mirroring gloom
drumming of an overworked heart
breaking this suffocating silence.

Twenty months sentence served
release date uncertain, life altered
beyond recognition, hope elusive
as the sun – I am powered down.

Pocketed energy calls for efficiency
integrity challenged by wavering
brain; peace a butterfly chained
by depression, praying for release.

Stability relies on yielding, practice
demonstrating caring, gentleness,
giving to self, mourning spontaneity,
I stretch to find perfection, believe.

Convince myself of synchronicity,
celebrate creativity, ideas, feedback,
focus on glimpses of well-being,
treasure merriment, inspiration.

Ego mistakes self-preservation
for selfishness, attacks motives,
loveability, invites depression,
awareness gained obliterated.

I cycle back; imprisoned anew,
am salvaged through interaction
simple sharing magically uplifts
rebirthing perspective; healing.

Through grace, I embrace gifts
surrender control, self-rejection,
retire the victim, and remaining
open, recognize response-ability.

Turning Point

Played host to insecurity,
catered to bullying,
undermined by warped
agendas – slayed by
provincial minds –
retreated, convalesced,
sanitized lost vitality,
believed in phantoms,
haunted by compulsions,
attempted rescues,
counseled to let go.

Shell-shocked
in the aftermath,
incoherent,
judging self,
incomprehensible.

Where do I go from here?

Ignore criticism,
disarm cruelty,
sanctify privacy,
detach, discern,
redefine boundaries,
embrace enlightened,
caring, receptive –
choose life.

I Need You

What is wrong with me –
too tired to argue, finding
argument in every utterance,
wanting peace, contrarily
lashing out without reason?

Is it the effort to untangle
my mind from the jungle
of sleep that leaves me
shattered, head-throbbing,
overly protective/defensive?

Your words are assailants –
bullets piercing my already
inflamed cerebrum – I recoil,
(this is not passivity) too spent
to quibble with your fallacies.

Maybe it’s frustration following
moments of equilibrium, in which
I aspire to normalcy, make plans,
set goals, am body-slammed
into reality, deflated once again.

I am building walls, shunning
interaction – heart aching, soul
despaired, I threaten congeniality,
fall apart – am sorry, and not
sorry – angry, righteously.

If I had words, I would praise
your loyalty, thank patience,
extol virtue – but I am too weary –
the formulation and expression
of ideas buried deeply within.

What is wrong with me is
the constraints of my current
disability – smothering sensibility,
crushing potential – dismembered
complacency, gutted propriety –

I am raw, festering, cringing
remnant, psychically flailing,
resisting daemonic, magnetic
impulse to disintegrate, surrender
to nothingness – cease to exist.

Forgo your platitudes, search
my eyes for truth – find the light
that flickers there – soft sorrow,
clutching onto hope – a lifeline –
and hold fast with your love.

Moments of Glory

Went for a walk today –
pushed my chariot out the door,
faltered after it and set out –
a beautiful, sun-blessed day!

It was an act of independence –
defying shooting pain in shins,
a groaning hip, an obstinately
bent spine – Carpe Diem, said I.

Two houses, three, I smiled
at passersby – “Beautiful day!”
our celebratory chorus – three,
four houses, freedom mine.

Five, six – I could see the corner
shops – half a block away – why
I bought this house – everything
close – until fated out of reach.

Then I felt it – that indescribable
shift in my spine, a warning –
shut down imminent – retreat!
Confidence melted into panic.

Now steps became a shuffle,
each foot dragged forward,
back curving in on itself, will
on full throttle – get me home.

Two houses more – you can
do it – husband stands at door
telling me to take my time –
No! No! Time is running out!

I stumble inside – find comfort
in the familiarity of my bed
think about giving into tears
then remember – the sun’s rays

generously washing over pale
housebound skin, the smell of
autumn, just before the cold –
a rare mid-November warmth

and I smile – a victorious,
proud recognition of how,
Nature offered a rare gift –
and I, for once, partook of it.

A Friend, Indeed

Friend, you guide
my brain-fogged,
somnambulist limbs –
like a mindless automaton;
I follow, barely registering
movement – grateful for
deliverance into the
fullness of day.

Once, I abhorred
your consistency,
your stifling repetition,
found your dependency
mind-numbing, soulless –
suffocated in your lack
of notoriety – called you
unremarkable.

Undaunted, you persist,
morally unbiased, life-
affirming, ignoring
lethargy’s blood-
sucking hold, lifting
me, comforting,
habitually reliable,
blessed routine.

Who Speaks for The Silent?

Your voice, he said, it sounds…different…

Project your voice
I learned in drama;
speak to the back,
keep it strong;
don’t let it falter.

I had to replay your message several times…

Hold that note,
dig deep –
from the diaphragm;
sing from your belly.

Must be something wrong with the machine…

Demonstrate conviction
let your tone convey passion
stand tall, be confident
motivate your audience
my orator Dad told me.

I couldn’t make out your words…

Performance demands voice;
activism relies on voice;
change requires voice.

You sound so weak…
not yourself at all.

I am losing my voice,
but not my words,
I have so much to say,
who will say it for me?

Chasing Mermaids

Impulse use to drive my plunges
unrestrained confidence propelling
fortuitous dives – unknown waters
an adventure to be conquered.

Even when anxiety came along
stalked the shoreline in horror,
assured of catastrophe (or worse),
I”d hold my breath and submerge.

Doubt would follow determination,
buoyed by adversity, swimming
forcefully, commanding adaptation –
I’d find my mermaid’s breath.

Motherhood brought restraint
called forth sensibility and caution,
replaced whimsy with practicality
shed the iridescent tail.

I only dig in dirt now –
ground my offspring to earthly
forays, forbid capriciousness,
convince myself I’m solid.

Absentminded burrowing –
(corners of compulsion)
reveal abandoned passages –
old waterways exhumed.

Proclaimed pragmatism falters;
spontaneity descends, transforms
I am nymph again – free floating
Neptune’s daughter resuscitated.