Re-de-fine-d

Ask me how I’m doing
and I’ll say “fine”, not
because I’m actually fine,
but because “fine” is the only
socially acceptable response.

If I said that I have been lying
here, for three hours now,
willing my body to move,
that would elicit unsolicited
advice and tarnish my “fine”.

I’d berate myself for breaking
my promise not to moan,
knowing that complaining
provokes a compulsive need
to fix, which just infuriates me

Because my concept of trying –
which is defined by getting dressed
each day – does not match trying
every new therapy, drug, exercise
offered by well-meaning but clueless

others, who may experience fatigue
at times, but have no understanding
of what is is to be exhausted after
something as simple as bathing,
let alone debating what I haven’t tried.

So, ask me how I’m feeling, and
I’ll say “fine” and we move on
to the weather, or the latest
movie must-see, and I can bask
in the warmth of the contact

carry the conversation into the
void of the rest of my day, smile
to think that I still have friends
who accept my “fine” even though
they know I am anything but…

(Art my own)

Blessings

Mother’s feet scream –
agony of her miserable condition,
underlying disease eating her.
My feet, free of calluses,
paddles slightly bent and fallen,
carry on with forgiving kindness.

Husband’s knees are red-hot pokers
shooting knife-sharp volts
with every rickety step.
Mine are knots in spindly
trunks that bear movement
graciously, allot me flexibility.

Father’s back grew weak
faltering in the end, hunched,
as if he’d born a cumbersome burden.
My back, not without its moaning,
carries me proudly erect –
like the spring sapling, winter endured.

Uncle’s heart beats erratically,
ceasing despite its mechanical support,
his life a testimony to modern science.
My heart flutters with expectancy,
aches with disappointment,
and soars with each new birdsong.

Sister’s tension rises,
the stiffness in her neck suffocating,
headaches blinding her vision.
My neck, slung now like a rooster’s,
puffs around my face like an old friend,
allows me the comfort of perspective.

Brother’s mind has seized,
lost somewhere between today
and yesteryear – never certain of either.
Mine, a constant churning cog,
gathers information, spews ideas
and bends in the face of creativity.

My eyes have seen suffering,
my hands throbbed with desire to help;
yet each bears their cross stoically,
and so I watch with compassion
and gratitude for the life I might have lived,
had my own vessel not been so blessed.

(Image my own)

What Saved Me

Legs, once burdened by resignation, now dare
Arms, once contracted by pain, reach out

Lungs, constricted by limitation, breathe deep
Heart, damaged by futility, finds new rhythm

Muscles, cramped and bullying, flex anew
And this flesh, previously tormented, glows

My body, ravaged and bruised, believed in fatality
My mind, turning its back on self, chimed concurrence

Only non-compliance keeps me alive
a rebellious will, graciously allowing
God’s higher plan.

(This poem is in response to a poem written at the height of my illness in 2017. The original is entitled Body Talks. Image my own)

Silently, I Follow

Silently, I follow
novice heart absent

Who can maneuver
the breathless streams

attempt a spiritual viewpoint
while continuously overwhelmed?

Urgently in need of a breakthrough
I am done, outdated

Summer’s passage conceded
this soul requires triage

An experience of caring
that does not resemble a demand for more.

(Image my own)

Could It Be?

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)

Nightmare

This malaise
this undeniable melancholy
product of isolation…
of an unreliable mind

What shadows awaken me?
a flash of car beams
or something more sinister?

Illness heightens sensitivity
I am set on ‘wired’ –
Internally running,
externally frozen

Sleep will not return
I don bravado
call out the ghosts
“Show yourself!”

Nothing.
Now I am raging –
“Who dares to disrupt slumber
then cowers in corners?”

Shadows grow eyes
and the walls undulate
a figure emerges
self in negative

I cower
pray I am delusional
mirrored self points downward
where floorboards recede

Skeletal remains
fill the earthen pit
nonsensical bones
of immortal pasts

Danger lurking
and I am not immune
the time has come
to submit…

(Image my own)

Frost Bitten

Gnarly, these withered limbs,
this vessel more rigidity than flow,
Winter upon me – a permanent clouding

Sunnier days passed –
oh how vivid the imagination
when blue skies met green grass,
no hindrances

Old dreams hover, tethered to fences –
defences to camouflage vulnerability,
offences to keep my paths cleared

Find balance in isolation –
an old tree, past her prime

Would cut loose this precarious hold
on all things fantastical, but
fear the act a harbinger

So, I bide my days
in this frigid limbo,
and hold on.

(Originally appeared January, 2019. Image my own)

M.E. (Anacrostic)

Memories escape me…
You’d think I’m older than I am…
Autonomic nervous system misfiring…
Lucky I have a sense of humour –
Grief would otherwise be smothering –
I remain optimistic
Counsel myself to find the lesson

Every day is a question mark
Needs ever changing
Can I walk without aids?
Endure a drive in the car?
Past my time without overexerting?
Healing requires restorative sleep
Although, it’s been years since I woke up refreshed –
Letting go of such expectations part of the learning –
Occasionally energy comes in bursts,
Mostly, it’s a trick…
Yesterday’s self no longer exists
Energy a quagmire…
Longing does not equal capability
Initiative encounters brick walls
Too often I overdo it
Insensitive to my own reality
Stubbornly unwilling to learn.

(Myalgic Encephalomyelitis is the disease I’ve lived with for 10 years now. I’ve collected a few more to keep it company along the way, and, of course, had one or two issues to start with. Anyway, I was recently inspired to write an acrostic poem. I’m sure there is more left to learn about living with these challenges. Image my own, as usual.)