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ME/CFS and related chronic complex diseases

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 ME/CFS. Thank you to all who participated with your word expression and art, sharing your dreams for a healthier tomorrow.

In here, Out there

By Anonymous

Matter more then matter

Matter more then matter

Here I am

Being me

The best way I can be

Limits make me free

Of thinking me to be, this limited body

No woman or no man

It is the soul I am

And I the soul am free,

to be who I can be

No limits limit me

The virtues, not the deeds

Way more then eyes meet

I matter more then matter

Illusions slowly shatter

And make me see the me

the me I’m meant to be

the me beyond M.E.

Feeling ME/CFS

By Anonymous

I hurt so badly I need hope …
The pain is shocking my brain like I the metallic cap of an electric chair
I scream loudly then silently as my voice echoes like the wind in a deserted house
Will you listen, really listen?

I hurt so badly I need hope …
The pain is freezing my muscles like I am stuck inside an arctic iceberg
I count with the ticking clock waiting for the melting that slowly comes
Will you give me warmth? Really give me warmth?

I hurt so badly I need hope …
My energy drains like I am a tree falling in the forest
I wonder if this is the end as I fight slowly than quickly yield to ground
Will you lift me up? Really lift me up?

I hurt so badly I need hope …
My surroundings swirl around me like I am a spinning top
I look for stability like a seasick sailor dancing on deck
Will you throw me a lifeline? Really throw me a lifeline?

Gone are the hopes of a career listening to others …

Gone are the hopes of providing warmth to the homeless …

Gone are the hopes of hiking deep into the wilderness …

Gone are the hopes of catching the sea spray while sailing …

Here are the days of listening to pink noise …

Here are the days of counting pills while laying on warm jade stones …

Here are the days of laying on heated jade stones …

Here are the days of watching wildlife from a zero gravity chair …

Here are the days of sea salt baths and chi machines …

It is You who Unites my Heart with Hope!

Dreams Not Forgotton

By Anonymous

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.

The Two of me – Life with ME/CFS

Can I allow you to see my emotional struggle and vulnerability?
Can I make my life be positive when I physically suffer and in pain?
Can I leave a legacy that means something to others?
This is a collaboration between two artists, a Denver photographer, Deborah Grigsby and a Italian painter with ME/CFS, Francesca Owens. The photo shoot took place in a Denver cemetery.

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.

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.

Swimming Upstream

By Christina Baltais

LOST

By Carol Hale

As sleep eludes me my mind flips and flops around like a fish out of water.

I swim again through the troubled waters of my life

Looking at snippets and snags of problems over which I worry.

So many could have beens, should have beens and would have beens

Want to be, must try harder to be, will I ever be again?

Where did I go?

I sank alone and unwillingly down so deep, so slow, so long – long years I cannot remember all.

Why can’t I find me now?

I had known my name, how hard the game and exactly how to play it

But the rules have changed, remaining hidden

Only to surface suddenly and swiftly pull me under without warning again and again.

This seaweed of illness in which I have become entangled

Makes meaningful life almost impossible.

i’ve lost myself. Who am I now?

Am I nothing more than an insignificant speck floating in the endless rippling oceans of the cosmos?

Doctor!

By Anonymous

What do you do
with a broken-down body
chalk full of spirit?

Doctor I beseech you! Tow
me from this wasteland junkyard.
Polish my dull veneer.

Pump up my flat tires.
Charge my weak battery.
Fill my tank to the brim

so I can rev my engine,
zoom down Broadway
with my radio blasting,

“I HAVE RETURNED”.

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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