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

You Look Good

ME, CFS, post-viral fatigue;
to the pain in my brain it doesn’t matter – it’s crazy.
Call me what you may,
just don’t call me lazy.

You only see me on my good days;
Never on my bad.
Unless you come to visit me;
Which no one ever does – it makes me sad.

Today will be another day of lonely despair;
But I will keep living … under duress
and savor
each tiny flash of simple success.

Skeleton leaf

N/A

Different faces of M.E.

By Petra van Driel

I Feel

By Jonathan Fitzgerald

Did you ever read the book, Flat Stanley,
About a boy who was totally flat?
He would lie there, floppy, with nothing inside…

Sometimes I feel like that.

Did you ever get sat on or pinned down,
By a brother or bully in combat?
You’d lie there, weighed down, unable to move…

Sometimes I feel like that.

Did you ever run and run and run as a child,
And fall into bed with a splat?
You’d lie there, exhausted, with legs just like jelly…

Sometimes I feel like that.

Did you ever have a moving toy,
Where the batteries were going flat?
It would lie there, slowing, listless then drained…

Sometimes I feel like that.

Did you ever get caught up in thick mist?
That’s my brain, it’s where the fog’s at.
You lie there, overwhelmed and can’t think straight…

Sometimes I feel like that.

Did you ever wake up on a cold winter’s day
And need to hibernate, or curl up like a cat?
You lie there, with no motivation to move…

Sometimes I feel like that.

Jaded, degraded and hazy.
But I’m still me – not weak, not a doormat.
Please don’t think that I’m lazy,

When I don’t always feel like that.

Because I’m me, I’m M.E, that is me.
And today I’ll hide under my hat.
But tomorrow I hope I’m recharged and happy…

And ALWAYS feel like that.

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.

Can you see me

Do you see me lying here?
I’m real. I feel.
See the picture on the wall?
That’s me, how i used to be.

Mute inside this immobile form is me.
Compressed, raw, real, feeling, thinking.
Still me.

I don’t want to be a burden,
so I don’t say too much.
But there are days I would cry, if I could.
But I can’t breathe if I cry.

Hearing every sound.
Clocks ticking, doors banging, people talking, laughing.
It steals my energy. Hurts physically, emotionally.
But you can’t see.

The door keeps banging. The clock keeps ticking. Lights too bright, odours too strong.

If I’m not the perfect patient will you still care for me?
Another week gone. Another month. Another year.
But I’m still here.

There’s a gulf growing. We live in different worlds you say.
Yes we do but I want to connect with what used to be our world.
But you don’t have time.

I keep still, trying to be no burden.
Inside the anxious thoughts come, hit a high.
I wait quietly for them to go.
I walk them out through the door of my mind.

I imagine the sun still shining above the clouds, the flowers, the scent of rain, the feel of water, a hug.
It’s so long since I’ve had a hug.

In slow motion I drink, eat, weight shift to prevent bed sores.

I hear you escaping to the beach, planning time away, another holiday.
You’re trying but feel so helpless.
Rejected by the illness, you want to run away.

Let’s run away together.
I’ll imagine the sun above the clouds.
You’ll feel the water when you swim.
Joy! Still there.

Can you stay if I’m the perfect patient?
If I’m not a burden?
I’m trying.

Inside this quiet form is me.
Bag of bones that I am.
Unwashed, unkempt.

But I dance in my mind to songs I remember,
I write stories, plan for a future.
I wonder how I can help my kids.
I still care.

Listening, always listening.
The sound of footsteps.
The kitchen sounds.

I used to have a home
now I have a room.
I used to have flowers
now I have weeds.

But there’s a beauty in weeds.
I see them dancing through the crack in my curtains.
Graceful grasses seeding, birds balancing on the stalks.
Subtle colour changes.

Can you see me, can you hear my heart?
I’m alive.
I’m the me you see in the picture on the wall.

Sit awhile, don’t run away, please stay.

Wren

N/A

Untitled

By Nina

birds don’t
need to fly –
to know
the sky

If Someday My Life Could Be so Free

By Melanie Pruitt

“I’ve been inspired by Keola Beamer’s song “Old Man Pueo” and it has been my inspirational prayer of hope. I painted this painting inspired by the song.”

I Want My Life Back

By Terry Greenlay

Who are we, but the ones for whom time stands still
we wake to a new day, faced with nothing more than forgotten yesterdays
in unison we cry out, a cacophony of uncertainty and sorrow
i want my life back – it goes unanswered
Who are we, but those friendless souls left without
we wake to another time, upon paths we once walked before
together, we are forgotten, bereft of the capacity to be who we once were
i want my life back – a common echo unheard
Who are we, but people, spirits locked within these mortal shells
we wake without dreams, yet try to savor each and every moment
united within ourselves, for there are no others to understand….truly understand
i want my life back – deaf are the ears that hear but don’t listen

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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