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.)
I am visible, yet hiding – balancing a vitality-blocking disorder that renders me inanimate, repulsive –
Who doesn’t flinch in the face of deviancy?
Creativity obsesses grasps hope that courage will annihilate the beast, that resourcefulness is all it takes to overcome – Hold on! it cries, nestled deep within the grief –
Oh, you think you see me, but I assure you, my friend, you do not – I am rebel, lost in isolation, vulnerability fantasizing revolution –
Resolve trapped between the exaggeration of infinite possibility and the unremarkable defence of compulsion to survive – thrive even, if spirit was not so aghast at current setbacks.
6:30 a.m. alarm sounds. “Time to wake up!” Compliance commands. “Just a little longer,” Sensibility suggests. Guilt, like an incessantly annoying child tugs on Conscience: “Come on; there’s lots to do!” Body does not respond.
Sleep wins and dreams come: homeless, relying on friends, no food, backed up toilet, children’s wide eyes fearfully imploring: When is this all going to end? Guild propels a return to consciousness.
8:25 a.m. “Up and at ’em! There’s a good soldier!” Compliance attempts to be chipper. “There’s really nothing more important than rest,”Sensibility suggests. “Can’t lie in bed all day!” Guilt counters. But body is MIA.
Dreams resurface: Setting up house in a thoroughfare people coming and going, oblivious to intrusion co-workers indifferent, eyes scolding – convicting… Guilt mutates to rage, Body chokes, gasps, reaches for inhaler sucking in desperate air.
11:11 a.m. “That’s it! Up you get!” “No! No! Rest is needed!” “The day is wasted! There’s no getting it back!”
“Silence!” A new voice emerges.
A collective intake of breath.
“Breathe,” comes the message. “Just breathe.”
A unified sigh.
“And breathe again.”
Tempers cool, and emotions begin to settle.
“What’s going on?” Guilt wonders. “Just trying to stick to routine,” Compliance defends. “It’s always been this way.” “But she’s ill now,” Sensibility adds, “and there needs to be concessions.”
“Breathe,” the voice reasserts, and all sigh again. “Just be in the stillness of the moment.”
Stillness has no voice. Its language is compassion and infinite, infinite wisdom.
“…and surrender.”
Compliance sobs with the release of such enormous obligation. Sensibility gratefully gives over the burden of responsibility, and Guilt…well Guilt is little, and happily snuggles up to Unconditional Love.
“There, there,” Voice soothes. “Isn’t harmony so much better?”
Body concurs and rises out of bed.
(Harmonics first appeared here September 2014, five months after illness left me bedridden. Image my own)
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.
(Rebirthing first appeared on One Woman’s Quest II March, 2018. Image my own)
One Woman's Quest 