Open Medicine Foundation®
Leading research. Delivering hope.
ME/CFS and related chronic complex diseases

Please enjoy the poetry and art submissions prepared with love by those challenged with ME/CFS and by family members and friends.  The poems and artwork provide a small glimpse into the lives of those of us with ME/CFS.  Each submission was composed with care and passion to build hope for the millions of people whose lives have been disrupted by ME/CFS. Thank you to all of our poetry artists for joining our first Hope & Heart Unite for Poetry & Art Slam. Enjoy reading through and/or watching the poetry presented as you are an integral part of our community. Please vote for your favorite submission. Check back often as new poems will be added through February 2.

You can vote for as many poems as you choose, but only one vote per person per poem. Voting closes on March 1. The top 5 poems in each category will be reviewed by a panel of judges (persons affected with ME/CFS and parents) to select the final winners. Winners will be notified by email.

Pain

January 21, 2019

By Johannes Pfeiffer

Even Though

January 21, 2019

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.

I Feel

January 21, 2019

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.

To live is the greatest joy

January 21, 2019

By Leora Borgenicht

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.

Hope is Not Fragile

January 21, 2019

By Anonymous

Hope is not as fragile as it seems.
It does not have the solidarity of certainty,
But it has the steely resolve
To look ahead and see our dreams.

Hope may flutter like feathers in our chest.
But it is a platform of courage
And though it may tremble
It provides comfort and rest.

Hope helps us to continue to see
The dreams and goals we have made.
It keeps us present and aware
So they do not fade, nor will we.

Birds of Imprisonment

January 21, 2019

By Liana C. Di Marco

birds of imprisonment

i think about my dreams of yesterday
and i wonder if they’re worth the price i pay
all i can say is that life’s a dismay

chorus birds of imprisonment
wanting to fly high up in the sky
spreading our wings wide and free

free to find a dream
light a share and knowledge
of peace, love and equality

free to speak our will
darkness is bright
i see the light flicker way beyond

i hear the call of truth
i feel my destiny
i’m blind to reality
i’m blind to reality

let us fly towards our dreams
don’t cage us with your choices
don’t cage us with your choices
don’t cage us with your choices

chorus

let us fly toward a new future
don’t feed us to the lions
we can’t help loving love
we can’t help loving love
we can’t help loving love
for what it is

audio:
https://www.youtube.com/watch?v=Y9XxZTc2NvM