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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.

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

Mercy of Pain

By Karen Napier

It comes to me as an unwelcome intruder
and yet knows me intimately.
Its steel fingers lazily trace tendrils across my head,
securing their vice grip of unhindered pain.

Time becomes endless and the world
shrinks down to the whispering
cries of my mind. “No, no, no, please stop.”
“Jesus.”

Who can tame this ravenous beast that
devours it’s prey without end?
Shall I let go and slip into madness?
If I surrender to the silent scream, can I stop?

How can an invisible foe wreak such savagery?
I have no defense against its cold, sharp talons.
I cry out again, desperate for relief.

“Jesus, save me from this all consuming pain.
But if that is not Your will,
rescue me from the poisons: despair and bitterness,
left in the wake of suffering.”

Surrendered, I submit to Christ, knowing,
because He holds me in His hand;
I will be transformed, not crushed,
bruised, but not broken.

What beautiful scars the mercy of pain rewards its bearer with
when filtered through the hands of Him; who bore the cross for me.

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 Flame & the Workhorse

THE FLAME AND THE WORKHORSE
by Roger Chin

The pain from within,
The flames in our brain.
Fatigue without end,
How workhorses strain.

May light shine on M.E.,
For the world to see.
It may be too late,
Please remember me.

The Alone

By Daphne Pottle Coley

One Room, four walls, two windows, one door and one bed.
The Alone
Minimal
Silent

To survive in The Alone acceptance is mandatory
No choice
Letting go
Floating, untethered
Existing in a void rather than a place

Dry and suffocating
The world gradually recedes
The Alone becomes comfortable
Necessity

Intermittent contact
Friends slip away
Family lives outside The Alone
None can see or feel The Alone
Real recedes
Everyone is beyond the wall
Mourn and accept
Always accept
Too many tears
Too many silent screams
Too much sobbing in the closet

The Bed is the companion, always there, always steady
The bed comforts and accepts
Doesn’t understand that it can’t replace The Human
Voice
Touch
Contact
Overwhelming
The moaning silence of the void swells
The tethers hold fast

The windows tempt and taunt
People walk, talk, work, hug, drive, join, meet, exercise, volunteer, vacation, bathe, get hair cuts, buy stamps,
The Outside is not possible in The Alone
Inside looking out folds the body into a sore, intolerable nausea
Throat closes and chest tightens
Closing the blinds in The Alone blocks what might have been

The Door mocks the bed
The bed is too big to fit through the doorframe
The frame blocks emotion and feeling
Squeezing out self
Exhaustion and pain are the sentinels
Silence and tears the barbed wire of its fence

The walls are ever seeing, ever present
Their weight is oppressive and blank
They never recede
The Alone has walls of invisibility
Always there, always inanimate
Hard, uncaring and disinterested
Vacuous
Only there

Fear hides tucked away into the corners of the room
When ready its long tentacles slide unseen down the painted surfaces
Piercing the dull routine of The Alone it glides across the bed
Sucking out the spirit of the prey
Replacing it with the venomous ooze of dread
Paralysis sets in and fear annihilates
Nothingness looms

UNITED

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.

hope in chains

By Anonymous

i keep my hope in chains
bound in darkness in the corner of my soul
tucked away out of sight
behind a shelf
beneath a cloth gathering dust
out of sight, and sometimes forgotten
⠀⠀⠀⠀⠀⠀⠀⠀⠀
i keep my hope in chains
stopping it from soaring
till it comes crashing down
for all the things i’ve found and thought might help
i was too young too old too sane too rich too poor too sick too healthy
too sensitive too mobile too eloquent
⠀⠀⠀⠀⠀⠀⠀⠀⠀
i keep my hope in chains
because i found a new thing that might give aid
if only they don’t bar my way
the effort hurts, i hurt and cry
but less than if my hope was dashed
so i keep my hope in chains

I am me not M.E

By Collette Wallace

I have M.E…

I aim for it not to define me
and be all people see

I love socializing
Find traveling mesmerizing
I loved working with multiple brands
And seeing live bands

I am now mainly bedbound on my own
But my love for my interests has only grown
They will always be part of me
And I will not solely be defined with M.E

Despite being constantly ill
Always wishing for a magic pill
I strive to work through the pain
And learn to dance in the rain

Be kind to yourself each day
Push the frustration away
Make a positive mantra & repeat it
To help strong mental health & keep it

Fight feeling down
Reverse that frown
Don’t shed a tear
Smile ear to ear

Keep your head up high
Look at the beautiful sky
Not today, go away,
tomorrow is new start to the day

Ignore friends that dropped you fast 
Hold close kind friends that tightened their clasp
It feels like there is no end in sight
But please like me never give up the fight

Within four walls

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.

A Song for ME

By Andy Rees

Where is the one who knew no boundaries?
Where are the days spent running free?
Where now the stamina that’s failing to spring afresh inside of me?
Down in the west, those days have all gone.
Out like the tide with little trace.
Sleeping for now under a blanket – yet still they fight to show their face.

Not to be beaten by the hurting.
Not to be crushed by loss, or grief.
Not by the disillusionment and anger at those with disbelief.
Faithful and strong, hope keeps returning.
Never be broken, heart of mine!
Even if all is lost, and hope itself – still I choose not to resign.

There is much more to life than doing.
There still are other ways to be.
There are new battles worth the winning, before they put an end to me.
Do not be scared by seeming mountains.
Laugh at the fates, that show no care.
Remain yourself, in smaller portions – you can still reach that top-most stair!

If somehow you can be contented.
If you can learn to take small strides.
If you can pace yourself and not be caught up in life’s remorseless tides.
You will still have the strength to be you.
Some of the time your star can shine.
You will have gained so much by learning just what to do with precious time.

How many people know their true friends?
How many get to live two lives?
How many know they have the inner strength to endure all, and to thrive?
Confidence needn’t be diminished.
Wisdom and patience never die.
Humour, and love, and understanding, are still the standards we live by.

HOPE

Hope

Hope
To have a better day
The pain to go away

Hope
This fatigue will soon end
And my body can mend

Hope
To find energy
Then start recovery

Hope
To improve my pacing
Against all I’m facing

Hope
I find new ways to cope
Which come within my scope

Hope
To increase more awareness
So disbelief is less

Hope
That I can work again
And all’s not lost in vain

Hope
To better understand
This dreadful M.E. land

Hope
For a future healthy
And at last M.E. free!

© Ros Lemarchand

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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