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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.

Course of Senior ME

By Norma Zuckerman

Time flows in front,
What I cannot do
Tree trunks and boulders eddying the way.
Time flows behind now,
Shining drops of life ahead.

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.

Birth of a new World

By Susanne Broända

I see you, dear

By Lilli-Ann Foss Gravingen

I see you, dear
when you wake up
sometime in the afternoon

I see you, dear
When you get ready for seeing friends
putting on makeup

I see you, dear
when you have to cancel – again

I see you, dear
when pain strikes
and you are bedridden again

I see you, dear
when fatigue makes itself visible
in your face and throughout your body

I see you, dear
the rare days you make it
and you shine

I also see you, dear
the countless days you don’t make it
When no one else sees you,
I still see you ❤️

Owl

N/A

An Ode to You and ME

Once upon an eerie morn,
I woke up with the claws of scorn;
One placed atop my aching head,
The other holding me in bed,

And months ahead to my surprise
Did fill with tears my swollen eyes.
Then I did learn what does prevail;
The illness that has made me pale.

For now my ears they buzz as bees,
That swarm among the plants and trees.
And muscles grasp and clasp and twitch.
The skin upon my arms does itch.

Though in my yard no apple grows,
But yet, the scent does brush my nose.
And where my glasses I do place,
When I return there is no trace.

There is a reason I presume,
Why I have walked into this room;
And so go back and hope to find
The reason that I left behind.

I used to run down any hall…
But now I hold onto the wall.
Sometimes I cannot walk at all;
Sometimes, I simply have to c-r-a-w-l.

For friends who have a winded pipe,
Of many words, the draining type,
I now must set a timer bell
To shorten tales they wish to tell.

And I explain in my defense
My friends, you must not take offence.
I yawn not at your strifes and woes;
The illness makes me nod and doze.

And what maintains a love affair?
It must be something in the air.
Or is it just the swings of mood
That tango with your solitude.
Perhaps the scent of menthol rub;
Or sweetened words I often flub;
When on occasion in my head
The script is there but then instead
The words do fumble and abort;
When salt is sand and wall is wart;
When win is wine and nod is nude
And speed is slow and mad’s the mood!!

The universe will soon reveal
The secret that it does conceal;
The reason for this pain and strife;
A new found purpose in my life?

Though now my thoughts are out of sorts
I still expel some fine retorts!
Just kindly tell me if you please…
WHERE have I put my bloomin keys??!

Colleen Downey c 1998
Ammended 2019

Your Fighting Attitude: This Too Shall Pass

Mixed media/encaustic

The Light

My left arm is on fire. My right arm is a metal rod.
Or so it feels.
But still, my arms move.

The world is grainy. Black and gold dots.
Or so it looks.
But still, I can see.

My feet burn. Every small, slow step must make scorch marks upon the Earth.
Or so it seems.
But still, I can walk.

‘Health’ is forgotten.
Pain is my norm.
But still, I live.

And beauty is my life. The sunlight shines into my dark room. And I remember to love life. And so, still, I will live.

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.

A poem to ME/CFS, my longtime lover

By Zeraph Dylan Moore

I.

It is brutal, terrifying, almost endless, I said,
but there were no words appropriate, and in the end,
I stopped trying to tell people about us.

I was becoming naked around you.
My muscles were dropping away, or rather,
it looked like dropping but it felt like tearing from the bone,
so it was in truth a strange kind of intimacy,

as if I was being prepared for an act of love
that required the most extraordinary nudity.

From the outside, no one knew what was happening.
You look so well, they’d say, you look so good.
At night your love would come and tear me open,
and in the morning I’d see the missing parts.

And people would smile at me and say, I wonder why
you cannot walk and I’d wave my stumps around and scream
that my legs were gone. It was like that, with us.

You were the worst lover.

Every morning I found it harder to get up. It was
like my childhood obsession with leprosy. Back then, I wanted to bask
in the question: what would it be like to die, while you were still alive?
“Going, so slowly, so ugly and so old,” I wrote,
thirteen and already aware of the terror of romance.

I used to have other lovers, before you.
The sky over my head as I hiked winding trails, the pleasure of cycling til my legs went numb,
swimming in the sea, the mystery of soil
& plants, working in the earth.
But you were a jealous lover.

Finally, it was just you, a romance of terror,
a romance of pain and hopelessness.
These were your special talents, for you were talented,
and even if your lovemaking involved no kisses
it was still the most intense I had ever known.

II.

It took a long time after that to get to know you,
perhaps even to forgive you. It took longer still to learn
how to tiptoe around your traps, your pitfalls
that can expand in a moment into canyons,
spasms of emptiness, at their bottom a wine-dark
ribbon, a river as deep as the Mariana Trench.

It took a long time to learn how to love you,
to hold space for your breathless pain,
your sudden and uncontrolled descents,
your demands for silence, for darkness.

And in the sixth year of our love, I turned to you in our bed and cupped your shaking head
in my palms, brushing my thumb over your lips, your tremulous and battered-blue skin.
It is brutal, terrifying, almost endless, I said,
and I love you, and we will survive this.

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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