United hands we clasp to cope,
So much to grasp, so great the hope.
Each ill with M.E., both husband and wife,
In sickness and health, vows for life.
Shoulder to shoulder, weary eyes watch “UNREST”,
Hot, pain-filled tears flow, this life is a test.
We watched as our lives played out on the screen,
Remedies failed, along with each dream.
How does one cope, with no work and no play…
United in hope, we must find a way.
Heavy hearts entwined, combined in hope,
Hands clasped together. We Grasp. We Cope.
Like a coin pusher in a game parlour whose tokens
rarely reach the ledge I herd before me
all those things I ache to do. A penny
for a plan, naughts and naughts of them:
books to read, people to meet, work to make,
exhibitions to see, borders to cross, thresholds
to leap over. And the heart pounds,
and the brain shouts: syncopation!,
and the clock turns its face away –
tick tock, tick tock, hold that thought,
tick tock, tick tock, let it drop.
How many spend their days in darkened rooms,
stretch time unseen, unheard, unheeded?
I waver, say us, say them, and us again.
Audio: https://soundcloud.com/marion-michell/25-january-2019-11-12-13
It’s a three month wait to see a specialist.
He must be good.
Hope builds. Hype soars. Finally we meet,
me clutching my medical history list.
Out of hand my notes are dismissed.
What? Why? I should have walked out then.
Oh… but… all that time hoping…wasted?
Only to be second guessed.
My answers to his questions, my default, my mantra,
“Tried that, didn’t help”
With suspicion reserved for addicts he speaks,
I feel the sting of injustice – so familiar.
I sense that impending question,
his default, his mantra. Psychiatrist?
“Tried that for 10 years, didn’t help”
Tears of frustration well, feeling shunned.
I’ve broken my vow not to cry.
In 5 minutes, comes his final default assaults.
Somatic. Functional. Behavioural.
“There’s nothing I can do for you… buh-bye”
I lurch and spin into a familiar zombie haze.
I join my husband in the car.
Only one word is needed to acknowledge my pain.
“Again?”
I nod. I shake my head at the futility.
We drive without words, then,
after 5 minutes, comes his mantra, his slogan, his default.
“We’ll just have to find another doctor”
My mantra.
My slogan.
My default.
My hope.
“Next”
By Laurie Glass
Even though we’re sick, in pain,
and our bodies feel so drained,
we feel the agony unfold,
our lives are put on hold,
we keep our inner strength.
Even though we’ve gone away,
and we’re missing ev’ry day,
we feel we’re on our own,
yet know we aren’t alone,
together we are stronger.
Even though we’ve all been wronged,
we’ve been ignored for oh, so long,
for years we’ve been denied,
our needs were set aside,
we are grateful things are changing.
Even though we’ve been unheard,
others help us spread the word,
together we’re unstoppable,
we’re making changes possible.
We’ll never stop trying.
Even though we are in tears,
grieve the loss of many years,
experts work on our behalf,
to try to get us back.
We’re grateful for each one.
Even though our hearts are breakin’,
even though our lives were taken,
we try to keep on dreaming,
we try to keep believing
that better days will come.
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