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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

Beautiful

By Collette Wallace

Author’s Note: Although I Have M.E, I won’t let it define me. I represent this in the drawing I drew of a Hare with Antlers. I sometimes see Hare’s out my bedroom window, they are beautiful. Although this one is different with strange antlers (representing the M.E) it is still a hare and beautiful.

Elisa

By Anonymous

In honor of a friend with ME/CFS

Skeleton leaf

N/A

Pain

By Johannes Pfeiffer

Come Home

By Valerie Taresh

When I thought the world was
all outside
I needed to be out of there
please just give me the chance
And see it from my side.
All I need is to be on my own
to go out there- to at least try.
I’ll call ; I’ll come home.
I promise
I’ll try.

I had mountains to conquer that
Became small hills.
I was too busy going nowhere forgotten dreams now only in clouds
Going everywhere
too fast
What next – what’s first
Too short to last

I ran so fast so far
alone
Just how I wanted life to be
The memories I made
weren’t memorable I suppose
Faded before they got to me.
So many things to do
What can wait – what’s last
What doesn’t need done?
I’ll go, I’ll see or I’ll do those things
As soon as I’m a bit more free.
I promise.

Now the house is too big
It takes awhile
to get from here to there
I often have to wait just one,
just two, wait- oh Lord, please
help me to the chair.

Oh God can’t you see my side;
I haven’t done it all.
I haven’t seen my kids enough,
I’ve children yet to spoil.
I always thought i could stall
for time before
my name was called.

My world grows smaller with
every dawn, the veil is draping low.
I’ll stay just a little while more;
I know it’s time to go.

I’ll be okay – I’ll be right there,
I’ve to finish the unsaid and undone.,
My memories left in loves on earth
My heart to my daughter and sons

May my life be a lesson for my earthly clan.
Don’t hurry, don’t worry, trust wholly
that in infinity –
There exists a Divine plan.
I promise.

Rhythm of Life

By Pat Fero

The Rhythm of Life
The earth knows.
Current flows to the continental divide.
Planting season in Portugal.
Monet meadow flowers the mountain.

The earth knows.
Storms wash the land, reviving life.
Fires sear old pine, sowing growth.
Snow slides shatter silence
sculpting the hillside.

Creatures know.
Salmon swim upstream.
Cubs emerge in Spring.
Hatchling turtles scramble to the sea.

Creatures know.
Wolves sense diseased marrow.
Whales beach in the shallows.
Death comes as it does and so it goes.

Humans know.
The night sleep and the day break.
Joyful hours mesh one hot summer eve
with Monday morning routine.

Humans know.
Life on 24/7.
Chop, clock, tick. stop. Diced thoughts.
Manage the moment lost.
I’m late, I’m late.
Apologize, euphemize.
The rat race, time crunch, time flies,
time is money. Catch you later.

But I don’t know.
Days go by as night. Night, days.
Weeks pass unnoticed.
Where am I now?
What happened when?
Time lost. I dawdle and find ways,
“How are you today?”
Today. Day. Fine today.
Time threads tangled, stuttering, staccato memories, shapeless images
gray, blue – green, pink, yellow.
A Monet without perspective.

Last year, decades passed
a blur and a muddle.
I wandered cursing Alice.
Was it the March Hare? May?
The Queen of Hearts? Spades?
Why does it make a difference?
A Monet has perspective.

This year, I am the eye of the needle.
My rhythm of life pulses and beats
and so it goes seamless transition
one day to the next, a flow
mindlessly sculpting a stream
to the river to the sea.

It’s quiet this night 
inside my mind’s bouquet.
Slender stalks and weeping willow boughs
sway into clusters and tiny blossoms.
Yellow and red and parrot blue
move through green leafy shadows.

I know the clock stopped and rats don’t race.
Time can’t crunch nor fly
or buy my ice cream
Bubble Gum Dreams.

My rhythm of life pulses and beats,
then flows as it does and so it goes…

Cold air in July from a vent
on a windowsill in a hospital room
killed the mums,
but the lilies, yellow, bloomed.

A precious gift, this fluidity.

PF

What Would I Do?

What would I do, you ask?
I’d wander among the untamed places
and learn the language of trees
the lilting dance of the butterflies.
I’d seek out the graceful stillness of the heron
and the harshness of the crow’s beak.
You see I’ve known too long a ferocious yearning for wildness
and the simple need to belong.

Ron Davis

By Michael Todd

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

ON THE BAD DAYS

By Edith Kaplan

“It could be worse”, she said

And that is certainly true

But my mind screams back loudly:

“IT COULD BE BETTER TOO!”

“It’s just a cold”, she said

If only that were true

My tearful heart cries out

Oh, if you only knew.

Nothing with this illness is “just”

In many more ways than one

It may be a small sneeze for you

But my whole life comes undone.

The private pain

No one can see

As I watch my life

Fall away from me.

Come back, I plead

I want much more

Not less and less

Than I had before.

“It is what it is”

Some like to say

But platitudes don’t help

Keep the grey away

I must dig deep

Within my core

To find those sparks

Of my life once more

And to accept the fact

That they cannot see

From the land of the healthy

What life’s like for me.

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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