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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.

To live is the greatest joy

By Leora Borgenicht

To live is but the greatest joy,
To breathe in a full mouthful of air.

To turn a new corner,
Without having a clue what is there.

To live is but the greatest joy,
To alleviate someone’s pain in part.

To let a friend know you are there,
And put a smile on their heart.

To live is but the greatest joy,
To know you are never alone,

To have someone love you in full,
So that your souls are intertwined to the bone.

To live is but the greatest joy,
To dance right through the night.

To run and run and skip and hop,
And have your senses put up a fight.

And when people ask me why I live,
Though I experience none these things.

Stuck in my bed am I,
With ME pulling at my strings.

I say because to live is the greatest joy
And I will live once again.

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!

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”

Conflagration

By L. Carol Christopher

Different faces of M.E.

By Petra van Driel

Fibro Blues

I just want to talk
But I can’t even walk

Without the meds
My feet don’t tread.

Put a pain patch on my hip.
But won’t put one on my lip.

I got the Fibro Blues.

Hands so numbed freezing cold
Everything is hard to hold.

My ears are red & feel so hot.
What is it that I’ve got?

Body hurts in every bone.
Should have had some cortisone.

I got the Fibro Blues

Bursitis, tendonitis
And costocondritis

Did I say migraine?
Who loaded this freight train

Insomnia, sleep apnea
It’s fibromyalgia!

I got the Fibro blues.

As dreamers

By Anonymous

Like a gnarled tree trunk rising out of the depths
drawing strength from the deep and patient earth
so too we will rise

yes, we will rise
and it will be sooner than any of us expect

when we had given up all hope
when we had become all too aware of the pain
of hope lost
and dared not to hope any more

There, like turning a corner and seeing a flower that managed to
break through concrete
or a friendly puppy wagging his tail
we will say,
“Is that it?
It seems so easy
why didn’t we see that before?”

and there it will be:
THE CURE

and we shall be cured.

But what interests me more is this:

Who will we be when we reach there?
What have we learned?

We are a blessed group of souls, cells in one large body,
experiencing the same agony in unison,
one of the hardest schools ever to have been.
An agony that, if we cannot convey it as we experience it,
how will we tell the tale once the memory grows dim?

Or why?

Our spiritual muscles have been flexed in the deepest way
and we have become olympic gold winners in the school
of pain

And this no coincidence
nor mischief of a malevolent God

To what purpose are we being forged in this way?

Who will we be on the other side of this?
What gifts will we collectively bring to the world
when we emerge, naked, moist and newborn?

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.

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.

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.

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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