Four walls and me,
Four walls a fistful of pills and me,
Surrounded by silence,
The silence that reminds me me myself and I.
You’re never silent,
The voice that never stops,
The endless alarm that disturbs my slumber,
You rattle round my brain in whispers and shouts until I scream.
Then I’m heard,
Outside of this box,
Outside of this cell walls have ears who swallow my words,
And even photographs in frames refuse to listen,
Because I have no voice.
I sit in my place—the patient’s chair—prepared to be a partner in my care. I’ve brought an expanding bible of medical tests and consultant notes, a list of medications and interventions, including what has worked and what hasn’t, and a diary of symptoms I now describe with familiarity. Muscles spasm in my core when I eat, radiating into my chest, back, arms and neck to form hard cords that bind me. I’m in need, seeking help to turn what’s chronic into manageable.
You look on me from your place—the physician’s desk. You steer me to start “my story” at the beginning, before pain. You lead me with questions that turn my persistence to find answers into anxiety. Then you say (in medical language): your emotions are the cause of your pain and you should accept that. Silence follows. You’ve removed me from the partnership.
body hangs off me like a scab,
torture-punished brain a scared little animal peering out of skull,
rats gnaw at the base of psyche,
lick rusty razor blade,
electric flame slice belly,
fiery metal spears dangle from gut,
The great beast paws idly at my entrails,
sparking shark teeth chew slowly up leg,
thrust scorching metal skewers slowly down meat of thighs,
pack burning steel wool into hollow shrieking calves,
porcupine worms writhe inside veins forever chewing out of meat and skin,
skate barefoot across field of burning blades,
walk face first into blazing buzz saw,
I can feel the flames
but I can’t see the light.
The image shows my face looking upwards with beams of pain shooting from my eyes. I hide behind a purple beard. Alien antennas sprout from my broad-brimmed hat. My face is neutral–hiding my pain.
Youtube: Central Pain Syndrome “Message from Hell #1: How Are You?“
We pay the cable from the reel in staggers,
jerk the squiggly line between the bushes,
wake the minor aches, the none too vicious
graters in the knee that love to grab us.
Nothing lightweight in the gear for this one:
the Black and Decker like a struggling toddler;
the squeaky derricks of our legs manoeuvred
round the pain to give the tools a platform.
Though it’s money saved; and while the gripe’s curtailed
we crouch to proud, redundant, bent old nails
which squeal against the grinder, scattering in the nettles
tiny marigolds of blistered metal
until the shanks resign, the flat heads flying.
But how to rise, from those smoking stumps of iron?
Work as hard as you can
for as long as you can
Then you’re ill
can’t bear talk
or remember how no pain felt
can count on the hand you can’t lift
can’t afford pride
you manage Christmas, on plastic
can’t walk your children to school
can’t provide –
the part that was you
the man that was you
the pride in you
Try not to care
that the love of your life
is no longer your wife
but your carer
Work as hard as you can
for as long as you can
M.E. destroys one life
and ruins more.
Fatigue replaces rage.
of what he once was
are all that sustain him.
He has no hope. His aching
visions of what should have been kill
comfort. What could have been is a lie.
He has no hope. He has no future. He
has only now. Life took revenge for a
life too well lived. He was a man out
of time. Now, there is nothing but
time. Resilient, he bears
it. He will not die. He
will suffer, always.
He will not die.
He does not,
Pain stitched into each
joint, he withers and fades. A
If pleasure is the absence of pain,
then pain comes first.
In the planter outside my front door,
a wren’s nest whorls down
to darkness. The nestlings chirr when I pass by,
or when the wind’s fingers brush too close,
as if the wind and I are mothers,
returning with meat, as if refreshed
sensation means relief from pain,
meaning pain comes last –
like a shadow, sleek and well-fed,
or a body’s imprint in the bed.
I grow to love you, dear familiar.
After struggling with ear problems all my life and having two surgeries for Cholesteatoma in 2008 and 2015, a recent flare up has caused months of pain that is unexplained and has baffled my consultants. Having this on top of my original ear problems and cluster headaches sometimes the pain can make days difficult. This is just a glimpse into what happens on a daily basis.
Me. Pain. Intertwined.
Days. Coping. Bad days. Flare ups.
People. Confused. Understanding Difficult.
Medicine. No effect. Doctors. Befuddled.
Decisions. Hospitals. Waiting. Pain.
Explaining. Constant. Tiring.
Symptoms. Unexplained. Words. Lost.
Tired. Exasperated. Threshold. Pushed. Sometimes. Beyond Limits.
Tired. Sore. Always. Hidden Truth.
Tired. Battle on.
People. Unconditional Love.
Caring. Trying to understand.
This is me.