Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), and Fibromyalgia.

Hope & Heart Unite for ME / CFS

PoetryOMF-e1546821494260

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

Payback

Payback Day- ME / CFS comes to collect.

I knew this day would come when I rested quietly in bed for days as birthdays & holidays approached.
I knew when I carefully weighed the risks vs rewards of each potential celebration.
I knew as I painfully decided to stay home alone missing the event entirely.
I knew as I chose to simply socialize, twice at home and twice away.
I knew when I fought to hide the myriad of symptoms instead making every minute count while I could.
I knew as I smiled in photos to help me remember why I keep fighting.
I knew when I left the festivities to sit alone wearing earplugs giving my body some respite.
I knew when I turned down the games, alcohol and tasty treats fearing a sudden shut down to a painful, paralyzed, catatonic state.
I knew as I felt every amplified sound of shoes on the carpet, utensils, utilities, pets, breathing, sighing and sniffle, each hitting me like a brick wall.
I knew as I held each hug a little longer almost to scavenge energy and support for the unknown ahead.
I knew as I felt my immune system kicking into overdrive as if under severe attack for days.
I knew as the familiar headache, sore throat, swollen glands, chills, nausea, pain in what feels like every cell of your body, confusion, racing mind and heart, chest pains et al washed over me.
I knew as I crawled in bed feeling like I had just suffered severe trauma.
I knew as I counted each long minute of suffering through the sleepless night.
I knew as I resisted the overwhelming urge to wake my husband for comfort since none exists anyhow.
I knew as I isolated myself in dark silence until I recover.
I knew as I attempted to keep hydrated and nourished even though my body was too occupied to deal with digestion.
I knew before numbing my system to extreme and forcing focus on these words like a lifeline.
I knew as I drew from comforting memories of you.
I knew as I realized this disease has stolen almost everything but not yet my love or voice.

A primal scream for ME

This is not a poem; it’s a primal scream.
Because those who should be listening are deaf to us;
Deaf to our suffering, to our plight, to our pleas.
MAKE ME THINK ME
We can’t even agree on a name for the disease,
Never mind what’s wrong or what to do about it. Please.
The human suffering is intolerable and cruel
But mostly passes unheard and unseen.
MAKE ME THINK ME
Ignorance would be a defence if I was the only case,
But there are 20 million others just like me.
Too ill to speak out or to fight to be seen,
Our battle is just to keep going; to still be.
MAKE ME THINK ME
75% of us are women and many children are affected too.
25% of us are housebound or bedbound
So we need you to fight for us:
To fight for our dignity, to ease our suffering, to find out what is wrong.
MAKE ME THINK ME
The system is broken; it has been for so long.
MAKE ME THINK ME
To you from failing hands we throw the torch.
MAKE ME THINK ME

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.

Mixed Media Angel

By Lilli Day Chronic illness has taken a lot away from me over the years including my art. I started this art journal several years ago thinking I would fill its pages in a year. Three years later I still have some blank pages left but I keep trying. Trying to hold on to that […]

Robin

As a note: This is one of my drawings and I will send a couple more. They are made with black pencil on paper

To live is the greatest joy

By L. Borg

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.

One Minute You’re Walking on Air, The Next You’re…

Mixed media

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.

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.

Your Fighting Attitude: This Too Shall Pass

Mixed media/encaustic

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.

Stay Informed

Be the first to hear our research news.

Subscribe Now.

No thanks