By Samantha Scott
Within for walls I wait and hope
Within four walls I breathe and cope
Most of the time I cope so well
But, just sometimes I don’t know how
How to deal with the crushing loss
With Time’s great clock, now green with moss
Physics’ avaricious appetite
Will never defeat my cause to fight
To fight for freedom, for choice, for air
I will breathe – I will live – I will not despair
For whilst there is a heart that beats within
Within these four walls a warrior grins
You may have purged a life that could’ve been
But you will not take my hope nor my determination to win
You waged this war but I stand strong
Within these four walls I see the sun
It blazes brightly with defiance:
The darkness will not overcome.
By Angela Everitt
Aching joints, muscles too
Waking every day with the worst kind of flu,
Brain so foggy, can’t think straight
Hope I can walk as far as the gate.
I’m so tired I can’t even talk
So many pills, I rattle when I walk
“You don’t look ill” others say
Try being me, just for a day
Doctors are baffled and some don’t even care,
If you’re stuck in your house they can forget that you’re there
Is anyone listening, does anyone know what to do?
Is there any hope for me or any hope for you?
An invisible illness, that others can not see
It’s very isolating, living with ME.
It won’t help to have a rest, that is not a cure.
I’d nearly given up, my future was unsure.
But out of the blue there’s cause for celebration,
We’ve got wonderful support from the Open Medicine Foundation.
Ministers are speaking in parliament about lack of care,
Saying that we’re “really ill” and the way we’ve been treated is unfair.
Unrest has been screened inn countries near and far,
Opening people’s eyes to show how ill we really are.
Thanks to Ron, Janet, Linda and the rest of the team
“There may be hope” we’re beginning to dream…
Millions missing and ribbons that are blue,
After decades of no funding and little research too
Suddenly there’s progress and real hope for me and you.
By Terri Deskins
Artist’s Note: In the late 1950’s my grandfather designed some midcentury modern abstract horses for my grandmother who absolutely loved horses. His original design was made out of wood and laid out on a framed wood panel. My father nicknamed them “Orses”. We recently found his original patterns that had been stored in different family member’s basements for over 65 years. The pattern he used was in perfect condition and placed in an old brown envelope with his notary stamp embossed on the front! I wanted to honor him by using his original patterns. I used acrylic paints and mediums similar to my other raku style work to get the crackle texture you see inside each of the shapes. Every crack is painted with a tiny brush. This diptych is named after one of the famous “couples” from the 1950’s & 1960’s television shows – “Lucy and Ricky” from the I love Lucy show. As a young child, I spent many hours with my grandfather in his woodshop and am grateful that I inherited his love for creating and making things with his hands. Each of the two paintings are on 14” x 26” x ¼ inch birch wood panels. They are permanently attached to a modern black “floating wood frame” (each frame is 15.5” x 27.5”), and are wired and ready to hang. Available for sale on my website www.terrideskins.com and will donate 30% of the proceeds to OMF. Note about artist: Terri Deskins is a contemporary and abstract artist living in southern California. She has ME / CFS and paints when she is able. Her work can be seen in galleries in Laguna Beach, CA, Dana Point, CA, and La Jolla, CA.
It seems like only yesterday that I was turning
Cartwheels in the sand. Sun shining down like
Bursts of freedom. It seems like merely hours
Ago, my dog was running and jumping through
Rural fields, hunting rabbit with not a care
In the world. How many minutes has it been,
Since I traveled to distant lands, strong as a
Warrior and filled with unburdened hope?
I am sure it’s merely seconds since I was rowing
My dinghy to land, riding my bicycle, laughing
And dancing and drinking coffee with friends,
Reading for hours, taking long walks to the sea.
And yet now, how time stretches before me like
A vast desert, arid and desolate and even hostile
In its moody monotony. Moments sweep by like
Unseen particles, and time is lost for all eternity in
endless reveries and gatherings of energy to move
from one action to the next. How did this meaning
of time seem to change, like an apparition seen for
just one glimpse then gone? Perhaps I am merely
Dreaming, and I will awake, suddenly and knowingly,
Realizing I was only sleeping, and I will arise eager
And ready for any new beginning as I greet the day
With purpose. If only it were so, for lately and a while
Now, I find myself struggling as if gasping for air,
To climb my way back into the womb of my dreams,
And to stay there, where reality is stranger than life.
HOW WILL I KNOW?
WHERE DO I GO?
HOW WILL I KNOW?
WHICH DRUGS TO TAKE
WHICH ONES ARE FAKE?
I AM ALWAYS SO TIRED
MY BRAIN FEELING SO WIRED
I SAY NO! I’M NOT A SLOB!
JUST CAN’T WORK AND HOLD A JOB
MY BODY ALWAYS ACHES
I MOVE AND FEEL LIKE SOMETHING BREAKS
MY LEGS ARE SO SORE
BUT I WANT TO DO MORE!
SO DIFFICULT TO WALK
OR FIND SOMEONE TO TALK
I FEEL SO SO ALONE
WEARY RIGHT TO THE BONE
I REALLY MISS MY LIFE!
JUST WANT TO BE A GOOD WIFE
MY HOUSE IS A MESS
CAN’T HANDLE THE STRESS
SO HOW WILL I KNOW?
WHICH WAY TO GO?
CAN YOU TELL ME PLEASE
I AM DOWN ON MY KNEES
BEGGING FOR UNDERSTANDING
FROM THE WORLD SO DEMANDING!
FROM MY FAMILY, MY FRIEND
IS THERE NO END?
THE PAIN I FEEL
THIS IS FAR TOO REAL
PLEASE STAY BY MY SIDE
IT’S GOING TO BE A LONG RIDE.
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