Tag: chronic illness

Discord

Does illness have a voice,
and if so; is it melancholy,
or dark and dank, divulging
deepest despair, or revealing
a vileness of nature?

Discord creeps along my veins,
disrupts muscles, systems failing
under the oppression –
“Stay strong,” friends counsel,
cannot hear the gathering storm,
feel the heaviness cloaking me.

I am not myself, but then;
who am I? Is disease a mutation
of the original sin – punishment
for fatal sins, or redemption
wrapped as trial – the whispers
gain clarity – I am faltering…

(Discord originally appeared here May, 2019. Image my own. Living with chronic, often debilitating disease, is an ongoing challenge. There is no cure, no end in sight, and yet, we must go on. This is for my fellow warriors, wondering, some days, what it is all about.)

Some Days

Why am I courting judgment
like an old friend,
popping in unexpectedly?

She overlooks my needs,
barges in reeking
of stale perfume, and
energy-sucking shoulds

I crave the subtle tones of compassion –
quiet whispers over tea –
a gentle pat, words of encouragement

But, truth be told,
I squirm at even this –
hate vulnerability,
hate this weakness on display,
this chronic, fucking disability

Seems I have dressed myself
in judgment’s cloaks,
walk in the pinched shoes
of expectations too tight

No wonder I’m exhausted,
am dying…numbed
to my own drama.

(Image my own)

The Same, But Broken

Fragility blindsides me –
I am a strong woman,
not courageous
but accepting
in face of pain,
grief,
illness.

Fragility is pervasive –
body fibres stretched
and torn, on brink
of brokenness;
mind overwhelmed,
obsesses, unable to organize
or let go…

If only I could let go.

I am weeping and not –
weeping from frustration
of immediate impossibility;
unwilling to weep, for totality
of loss is beyond me.

Outside these walls,
life continues,
regards me with disgust/
indifference/repulsion –
equality ignores the ailing.

And, yet…

in this state of rawness,
stripped of busy-ness,
I am as any other –

Just a soul seeking
a meaningful existence.

(The Same, But Broken first appeared here December, 2014. This edition has been revised. Art 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.)

Snakes at My Door

A preacher dominates
six o’clock news
megaphone voice
commanding protest
mask-less hordes roar

A young repairman
offs his mask with distaste
claims it’s all a hoax,
the cure is withheld
a ploy to control –
read it on the internet.

A friend whose wisdom
and words have inspired
confesses she’ll not accept
vaccination, as her life
is in God’s hands.

And from behind a curtain
of despair, I observe
as words, like snakes
gather on my front step
nest in a writhing menace

The virus’ venom
a poison I’m not sure
I can defeat

And what am I to do
when abstinence from public life
makes me conveniently invisible

and fear that if I speak up
will reveal a truth I cannot bear
that the devout, the young, the compassionate
care not a wink for the likes of me.

Ride Along With Me (2)

Passenger, am I
backseat traveller
input unsolicited

I ride along.

Passenger, am I
view limited
direction speculative

I am not driving.

Driver is motivated
self-assured
I relax…until
temptation boards

Wait a minute; who invited temptation?

Driver is distracted
ego taking the wheel
Who’s paying attention?

I am not alone.

Lackadaisical dropout
sits with me – mooch
and weekend boozer

How did he get here?

Vehicle is outdated,
I warn, not a lot of room
ride at your own risk

They don’t make them like this anymore.

Crazy sister is here too
or maybe it’s me, ’cause I swear
I saw the ghost of another

It’s a good thing I’m not driving.

Darkness falling and out of gas
we stop and neon lights blare
Make a break for it!

Or… I could find a new driver.

Maybe put God at the wheel.
Would have to pay attention.
Oust the adulteress and sloth.

Be on my best behaviour.

Turn my vehicle into a golden chariot
powered by horses with wings of white
fly above all the obstacles

Headed for the Promised Land.

All fantasy, of course
I’m a backseat passenger
until vitality is restored

Then I’ll park this old model

And get a new one with GPS.

(Ride along with me first appeared her November 2014. This version is edited. Image my own.)

Spooning

I have measured out my life with coffee spoons.”

Source: “The Love Song of J. Alfred Prufrock” by T.S. Eliot

I line my spoons on the counter –
measures of the day’s reserves

one spoon for morning tea
with a side of emails read

a shower requires two or three
with a guarantee of needed rest

I’ll linger horizontal – added care
when an outing is in the plans

the thrill of venturing, and delight
of conversation shared wipes

the counter clean – I’ll crash
and crave for one spoon more

enough to get me into bed
pray tomorrow’s count the same.

(For Reena’s Exploration challenge, in which she challenges us to use one of the given lines of poetry.  Spooning is the term used for those of us with chronic illness who have limited energy.  Myalgic Encephalomyelitis is characterized by exhaustion after exertions.  My day starts with depleted energy, and I work from there.)