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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

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.

Appointment by default

It’s a three month wait to see a specialist.
He must be good.
Hope builds. Hype soars. Finally we meet,
me clutching my medical history list.

Out of hand my notes are dismissed.
What? Why? I should have walked out then.
Oh… but… all that time hoping…wasted?
Only to be second guessed.

My answers to his questions, my default, my mantra,
“Tried that, didn’t help”
With suspicion reserved for addicts he speaks,
I feel the sting of injustice – so familiar.

I sense that impending question,
his default, his mantra. Psychiatrist?
“Tried that for 10 years, didn’t help”
Tears of frustration well, feeling shunned.

I’ve broken my vow not to cry.
In 5 minutes, comes his final default assaults.
Somatic. Functional. Behavioural.
“There’s nothing I can do for you… buh-bye”

I lurch and spin into a familiar zombie haze.
I join my husband in the car.
Only one word is needed to acknowledge my pain.

“Again?”

I nod. I shake my head at the futility.
We drive without words, then,
after 5 minutes, comes his mantra, his slogan, his default.
“We’ll just have to find another doctor”

My mantra.
My slogan.
My default.
My hope.

“Next”

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

Calf

N/A

To My Dear Ones

By K. P. Anderson

Your minutes are diamonds,
Or, better yet, emeralds
There are days when you think of them
As crumbs of soil
Buried as they are
Beating within
Drawn parchment shades
In those hours
You do not appreciate
The value imparted by scarcity
The precious dazzle
Of the moments you wield

Your Fighting Attitude: This Too Shall Pass

Mixed media/encaustic

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.

Sometimes

Sometimes I feel like the loneliest person
Adrift on the endless sea
Waiting to find the safety of shore
But find it’s only M.E.

I’m fighting the hardest battle
Only to look up and find
I’m fighting without a weapon
And I’m also fighting blind.

The enemy is clever and changes
With each passing day
Unrelenting and unyielding
Intent to make me pay.

Sometimes I feel like a flower
Wilting before I bloom
Sometimes I feel a prisoner
Slowly awaiting my doom.

The tears that flow are constant
A reminder of the pain
The sun has lost its way
I feel now only rain.

Sometimes I am a fortune teller
Knowing all too well
The sadness that tomorrow brings
With the same story to tell.

I feel all of these things inside
Sometimes I struggle just to cope
Yet the one thing that brings me through this pain
Is the kind promise of hope.

For hope is not a false promise
That is made up in the mind
Hope gives us courage to fight the war
Sometimes hope is the strength we find.

Now we fight together, joined hand in hand
Even when we cannot take a stand
Sometimes our spirits are stronger than our bodies can contain
Now it’s time for the sun – after the rain.

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.

Solitude

There is beauty in solitude.
Yet, also loneliness.
I am confined by four walls
Unable to escape.

Sunlight streaks through the window,
But I cannot feel its warmth.
Only the cool breeze of missed opportunity.
The light fades revealing another lost day.

Others stop by to listen in,
Staring at my curiosities.
Eventually they must leave.
I am forbidden to follow.

Each day ends with disappointment,
As I drift off into the nothingness of sleep.
Each day begins with sadness,
As I face the solitude once more.

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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