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.)
It came in the peak of summer
that most optimistic time, when sunshine equates with health and bodies glow with exertion fit and in their prime – it came
with all the fury of a winter blast
harsh and cold and unyielding – wrestling me from my complacency annihilating vibrancy, self-definition de-leafed, rendering me raw, exposed.
I clung to the darkness, blanketed
against the harshness of light, the impossibility of sound, or scent – was de-shelled, ungrounded, ravaged by volatile nerves and misfiring impulses
praying for the certainty of death…
but it is spring that follows winter and in time, restlessness set in – the dogged whine of hope willing my mind to stretch, my body to try
spirit, tired of withdrawal, pushed
against the wall of dysfunction, bolstered by a shifting acceptance found roots in an unspoken faith and I felt possibility, like a tiny sprout
reaching for the sunshine,
ventured out of my cocoon – still alive! Redefining purpose – still precarious, highly vulnerable but optimistic for the return of summer.
first appeared on One Woman’s Quest II March, 2018. Image my own) Rebirthing
Measured in spoonfuls
Still feel the angst of
pressured from within
spend unavailable resources
push against the walls
with little to show
surrender to impotency
and wait for the next surge.
Yielding Spirit Tampered Enthusiasm Mute Incomprehensible Challenge
(M.E. or Myalgic Encephalomyelitis is said to be systemic. Every so often it reminds me so I attempt to write through it. Image and poem my own)
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 – brains 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.
first appeared here June, 2016. Image my own.) Not Dead Yet
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 anything but…
Re first appeared here February, 2016. Edited here. Image my own) -de-fine-d
In illness, I am passenger –
no matter how venturous mind’s reach, the raw truth is that limitations confine
This is not a sentence
for some perceived crime, but a re-framing – attitude shifting to acceptance
Choice becomes thoughtful –
time allows for that now – and gratitude takes hold in every corner of “I can”.
(Art my own)
I am drizzle –
particles failing manifestation
I am xyloid –
essence of being stiffly carved
I am sun dog –
illusion of brilliance floating by…
(Tuesdays, I borrow from Twitter @Vjknutson. Image my own)
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.
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.)
Disability corners me
twixt two directions – the hurried rush of ambition’s call and the gentle nudge of wisdom settling
Confined to four rooms
I am distanced from – invisible to – the weekend warriors whose self-satisfied grimaces race by my window
I remember that push –
not enough hours to the day not enough money to succeed never thin enough, fit enough always grasping for more…
Legless and exhausted,
I am disqualified from competing, immersed in retrospection, luxuriating in perspective – I’ve always had, indeed, continue to have everything I need: a home I can navigate, the endless beauty of nature and the care of loved ones.
Abundance, I’ve discovered, is attitude:
recognition and acceptance that life is sufficiency
(I’ve derived this poem from a
post by the same name, dated October 2014. At the time, I was five months into the losses that were Myalgic Encephalomyelitis. Image my own)