Hope & Heart Unite for ME/CFS

PoetryOMF

First Hope & Heart Unite for ME/CFS

Poetry & Art Slam

Your words help increase awareness and strengthen our community.

Your words and art have power. 

The heart and hope shared in your words and images truly left us speechless. We thank each and every person who submitted an entry. You have truly touched the hearts of our community and inspired many people.

We are honored how our OMF community has ascended to new heights for this project. We received over 130 submissions from 17 countries. The poetry and art are available for you to view here.

Our panel of judges and your votes combined to identify the poems that most represent hope. In total, all submissions received over 2,000 online votes.

We are pleased to announce the winning poem is Even Though by Laurie Glass. Laurie captured the essence of hope for so many. We thank Laurie for her message and thoughtful use of imagery.

Even Though

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.

Poetry is a form of art used to express ideas, feelings, and messages. We invited the ME/CFS community to join OMF & the non-profit, Lev Leytzan, for a Poetry & Art Slam to share messages of hope for a healthier future for all people affected with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS). Thank you to all who participated with your word expression and art, sharing your dreams for a healthier tomorrow.

Keeping the Hope - An Original Song of Hope by Maxwell Elefant and 95North

The Specter’s Negative

By Leili Anassori

I am the specter’s negative,
the ghost tale gone awry.
I’ve been yanked from the land of the living,
but I have not been sentenced to die.

I haunt the house of my childhood,
able to look but not to touch,
as the world speeds by me progressing
at a pace I’ve no chance to keep up.

Maybe the reaper took me then returned me,
but put all of my pieces back wrong.
Something vital he stole away with him –
the fuel that allows my life to go on.

The desire to do does not leave me.
I step out into the world as I am,
but we are no longer compatible.
I’m thrown back to my haunt with a slam.

My solid form holds me hostage,
eyes trained on a world that’s not mine.
Burdened by its unmeetable requirements,
yet still burns the will to survive.

So I fashion a life on my shadow plane,
scavenging droplets of joy where I can.
To find meaning in this endless in-between
is not a feat meant for mere mortal man.

I beseech the Olympians of science
to avenge this unnatural theft.
Return to me my living force
while I still have some time left.

Pain

By Johannes Pfeiffer

Birds of Imprisonment

By Liana C. Di Marco

birds of imprisonment

i think about my dreams of yesterday
and i wonder if they’re worth the price i pay
all i can say is that life’s a dismay

chorus

birds of imprisonment
wanting to fly high up in the sky
spreading our wings wide and free

free to find a dream
light a fire and share knowledge
of peace, love and equality

free to speak our will
darkness is bright
i see the light flicker way beyond

i hear the call of truth
i feel my destiny
i’m blind to reality
i’m blind to reality

let us fly towards our dreams
don’t cage us with your choices
don’t cage us with your choices
don’t cage us with your choices

chorus

let us fly toward a new future
don’t feed us to the lions
we can’t help loving love
we can’t help loving love
we can’t help loving love
for what it is

audio:
https://www.youtube.com/watch?v=Y9XxZTc2NvM

MY OLD CHAIR

By Carol A. Hale

My old chair has always been there
Cradling me through dark years of illness and despair
Easing me through months when everything hurt ‘cept my hair
Rocking me as I helplessly watched independence fly way into thin air
Soothing me through sleepless nights when awakened from yet another nightmare
Its arms holding me as I mourned the loss of those who ceased to care
Listening in the dark silence while I cried and my very soul I did bare
Ever a comfort through days cloudy or fair
I do declare
Nothing can compare with my old chair

Ode to Hope

Ode To Hope. by David Hefferon

Little did I expect a carer to be
But that is the life with a wife and child with M.E.
It is a job of love and not of choice
It is up to us to give the “missing millions” a voice.

Some may say it is a chore and a sacrifice
But to care for loved ones, you never think twice
To care for someone with M.E. is more a privilege
The medical abuse received is more a sacrilege.

Ignored and abused at the hands of the psychiatric community
Still they refuse to acknowledge the auto immunity,
The harm and damage caused by the PACE
Is now being shown to the biggest medical disgrace.

Abused, ignored, accused and persecuted
The doctors soon discover, the millions will not be muted
Worst of all is the paediatrician
Who refuses to accept M.E. as a medical condition.

In comparison the abuse of adults is mild
Compared to what they attempt to do to your child
The time has come for them to get off their psychosomatic perch
And start reading and learning the biomedical research.

As long as Paediatricians attack our children with gaslighting
Parents will protect their children and keep on fighting
As long as they continue to use fake charm
They should remember Primum Non Nocere – First do no harm

For all those still struggling to cope
Be brave this ode comes with a message of hope
Belfast, America, Australia, Denmark, whichever nation
There is always HOPE thanks to the Open Medicine Foundation

As the biomedical research archive becomes fuller and fuller
We must all give thanks to Davis, Montoya, Coyne, Speight and naturally Tuller
These are to name but a very few
To all the good Doctors our thanks is due.

Hope springs eternal of that I am sure
As all these good doctors strive for a cure
To give these millions back their voice
In hope let us all rejoice.

Elisa

By Anonymous

In honor of a friend with ME / CFS

Against Gravity

Caged in her house, Emily Dickinson wrote hope is
the thing with feathers, and I want to know
whether it’s flying to find me by starlight and lay lines.
Will it nestle its heartbeat into my hands
like a chickadee, bringing just enough
of itself to make the day worth the struggle?
Or is it a hawk, circling into the vastness, out of
the narrow confines of my vision?
In fall, my sky empties of cranes and my mind fills
with faith in April’s power of redemption,
but if hope embarks on a fraught migration,
for how long can I keep on singing in the dark?
Mary Oliver maintains that each body
is a lion of courage and precious to the earth.
Fellow sufferers, your fortitude is gloriously golden;
who wouldn’t admire your roaring will to survive?
I like to imagine every lovely one of us supine in the sun,
brilliant birds weaving feathers through our manes—
one day we will rise, against pain’s gravity.

Life Jacket

By Karen Napier

Sometimes in the river of difficult circumstance,
I forget that I am already wearing a life jacket.
Lying face down in the water, I fear I will drown.
Then Jesus whispers in my ear “Turn to me.”
As I roll over to look up,
my face comes out of the water that is overwhelming me.
I take in a deep breath of hope.
I am safe; I was safe,
I just forgot to make use of the life jacket I was wearing.
Keeping my eyes on Jesus;
keeps my face out of the water of discouragement.

Hanging On

By Anonymous

Exhausted beyond description.
Body, mind, soul, spirit, will.
My arm molecules feel oddly cleaved.
I try to sleep
Floating
Drifting
Thinking
Half-dreaming
Restless.
With the cat by my feet.
There is no room to stretch out.
Too hot, I expose a shoulder.
Too cold.
I feel feverish
I take my temperature.
Below normal. The flashlight is too bright.
Drowsy but more awake now,
Disappointingly and acutely aware
That I still feel like hell.
And that I have to pee
Too tired.
Finally my bladder wins
I drag myself to the bathroom
Heart racing.
Grab a cookie on the way back.
Back to bed.
It is still night, although it’s brightening outside.
I dread going back to bed
But really have no choice.
Another day of this. How many more?
I am desperate for it to end
But I am I desperate enough to end it?
After some serious thought I conclude I’m not.
And I try to go back to sleep.
Sometime later,
It will be
Better. I have to believe.
I just have to hang on.
But I’m too weak
Too tired
There isn’t enough of me left.

I can’t do this.
Yes, you can. You are. And you will.
My father’s voice comes from the beyond, tearful for me, but I sense pride and so much love.
The cat jumps up, wanting to cuddle.
Maybe Dad sent him.
OK, I will try to sleep some more.
Maybe
When I wake up
It will be better.

You Look Good

ME, CFS, post-viral fatigue;
to the pain in my brain it doesn’t matter – it’s crazy.
Call me what you may,
just don’t call me lazy.

You only see me on my good days;
Never on my bad.
Unless you come to visit me;
Which no one ever does – it makes me sad.

Today will be another day of lonely despair;
But I will keep living … under duress
and savor
each tiny flash of simple success.

Terms of Use

Lev Leytzan (non-profit) & Open Medicine Foundation (OMF) are pleased to provide you with “Hope & Heart Unite for ME/CFS” for your personal inspiration. Nothing on this blog constitutes a recommendation for medical treatment or care. Lev Leytzan and OMF have the exclusive right to decline any portion of, or complete, submission.  By submission of work, you agree to the following statement:

I agree that by submitting my original work (which may be in the form of a poetry, artwork, stories, photography or other content) (the “Work”), in consideration for the opportunity, but not the obligation, for the Work to be included in OMF and Lev Leytzan’s online and other social media and related outlets and in any other form of media.  I understand and agree that OMF and Lev Leytzan shall have the full right and non-exclusive lifetime license to use the Work, in any media, on a royalty-free basis, alone and in combination with other works, and to modify or edit the Work for editorial purposes at OMF's and Lev Leytzan’s discretion. If under the age of 18, permission from a parent or guardian to participate is granted.

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