Open Medicine Foundation®
Leading research. Delivering hope.
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

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

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.

How Will I Know

By Anonymous

HOW WILL I KNOW?

WHERE DO I GO?
HOW WILL I KNOW?
WHICH DRUGS TO TAKE
WHICH ONES ARE FAKE?
I AM ALWAYS SO TIRED
MY BRAIN FEELING SO WIRED
I SAY NO! I’M NOT A SLOB!
JUST CAN’T WORK AND HOLD A JOB
MY BODY ALWAYS ACHES
I MOVE AND FEEL LIKE SOMETHING BREAKS
MY LEGS ARE SO SORE
BUT I WANT TO DO MORE!
SO DIFFICULT TO WALK
OR FIND SOMEONE TO TALK
I FEEL SO SO ALONE
WEARY RIGHT TO THE BONE
I REALLY MISS MY LIFE!
JUST WANT TO BE A GOOD WIFE
MY HOUSE IS A MESS
CAN’T HANDLE THE STRESS
SO HOW WILL I KNOW?
WHICH WAY TO GO?
CAN YOU TELL ME PLEASE
I AM DOWN ON MY KNEES
BEGGING FOR UNDERSTANDING
FROM THE WORLD SO DEMANDING!
FROM MY FAMILY, MY FRIEND
IS THERE NO END?
THE PAIN I FEEL
THIS IS FAR TOO REAL
PLEASE STAY BY MY SIDE
IT’S GOING TO BE A LONG RIDE.

Your Fighting Attitude: This Too Shall Pass

Mixed media/encaustic

Award Season

By Maija Haavisto

glossy magazines tout hottest pajama looks
palest facial tones untouched by the savage sun
sexiest sunglasses to match your pillowcase
most stunning impressions left on the mattress

posh ceremonies honor toes touching the floor
heroic ventures to the bathroom
the superhuman strength needed to chew food
best attempts to leave the house
words laboriously uttered: one, two, three
no, that’s enough, please stop, don’t wear yourself out

empty chairs at gala dinners hosting only we’re-there-in-spirits
my cheek caressing the red carpet of the so-called living room

would you spoon more smoothie in my mouth, my darling
I swear the bits of kale taste like finest chocolates in my dreams
next year, every year, in my dreams
I will win the trophy for finest daydreams
moved to tears in my whispered speech
I picture you gently picking kale bits
stuck between my teeth

Cure M.E.

By Anonymous

I can’t escape this body
it fills me up with death
Like my cells, they – are not working
and so it is, I guess

Mitochondria are failing
the flame will not ignite
No ATP created
my body can not fight

The cells are hibernating
I am a sleeping bear
The brain is filled with fogginess
my conscious is not clear

My body is a prison
my mind is running free
I’m dreaming of tomorrow
when I will dance, you see?

The hunter is a virus
or some immune deficiency
The doctors haven’t figured
their cure is not for M.E.

But years have passed
and maybe, coincidence set free?
Some oncologists from Norway
they found a long lost key

I have lost a decade
and others maybe more
We reach out to the public
Our lives are worth much more!

Raise the funds for research
to find the final key
The puzzle will be finished
and that will set us free!

Enough

By Susanne Broända

A New Day Tomorrow

By Judi Warner

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.

For Whitney

By Jen Cooke

At the summit, the peak I dreamed about
Though it is nothing like I imagined
I am at the top
Suspended
From this place I know the suffering of the world
From top to bottom, east to west, I have seen it all
I have conquered it, and it has conquered me
Equal opposites – this life and me
I have lingered here…now, here I remain
Perched on the mountain’s top
No one to sound my name
It is time to go, to leave this place
Depart from whence I came?
My heart rings desperate
The mighty warrior who has conquered all
Yet the road back down, it is too much to bear
Can I rest my head here and wait for my angel?

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.
Donate