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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

Birth of a new World

By Susanne Broända

Hope is Not Fragile

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.

I Can Do No Other

To be sane in a mad time 
is bad for the brain, worse
 for the heart.
— Wendell Berry, “The Mad Farmer Manifesto: The First Amendment” 1973

The fixers have left,
Thank God.

I had wanted to bury the roses today
but was caught up in grief
wordless
distracting
compelling
life-altering.

I’ve come to accept it
Like a heavy wind I must hunker down in
to keep from being blown over
Kneeling hurts less than being felled time after time.
The effect is the same:
stasis of body.
I still forget sometimes and thud, I hit the ground reeling.

I know it in my body now
Wracked but not unto death
Bigger than a wave it dismembers who I think I am and enfolds me in its depths.

It calls from beyond and within like hurricane’s eerie green light.
With the light, I know I will again be sucked from the world I thought it.
I relinquish naming, framing, planning and completing —
skills I’ve honed, as if for all occasions, in my sheltered life.
The shelter has blown away.
I’m learning new ways of being with this storm,
embodied in disjointed compact emptiness.
No wonder many kneel to pray. It is my posture of heart.
I can do no other.

Felled or hunkering with the roses
we each are pruned,
awash (my eyes sting as if to remind me I am living blindly),
and bounded in cloth of mundane subsistence.

We are dropped.
I, at sea,
to descend the depths, if I allow,
to learn a new way to breathe in cold darkness.

At the bottom (or is it?)
staggering numbly, embarrassed, ragged, exposed, angry, or accepting
this inconvenience that has become my life,
the ocean depths, once so soothing, now where deep speaks to deep, whether I’m listening or not.

This storm?
This sea?
I have let them become me.
Is that itch a bud
growing in the marrow of my pruned heart?
I hold my emptiness and wonder
as I push away wonder.
I wait.

And you?
You hold hope.
You do not judge or abandon.

In solitude we wait together.
The storm abates, for now.

We have been practicing resurrection. Have you noticed?

Hope

By Jen Larkin

With each new year
We send our hopes
For solid research
Far and near

Surely one day,
Somewhere, sometime
A light will shine
And lift the grey

Our efforts won’t
Have been in vain
When others can live
Without our pain

So many years –
So many lives –
Such loss and grief.
Too late for me I’m sure,
Yet still there’s hope
For those to come
Belief, understanding,
Answers, cure?

JL 2019

Let Life Become Small

By Ernestine Cath

Allow life to become your bed
Allow life to become the sounds of
seagulls
from the sea nearby
You don’t have to travel there
to know
it is there
Allow life to be the stretch in your back
when you cross
your right leg over your left
You had such a limited understanding before
of what exploring
the world meant
Go for a swim in the deep waters
of your belly
Take the staircase of your gorgeous
spine there
Explore the icy tips of your toes
and come back up for dessert;
To suck on all the glorious memories
you have made
They are endless
Then lie still
To wait for the seagulls to take you away
What do you imagine you will see before you die?
I tell you not half the fantasies you dream about
It will be seagulls and love
That’s all.

Beyond the Chaos

By Judi Warner

Conflagration

By L. Carol Christopher

The Flame & the Workhorse

THE FLAME AND THE WORKHORSE
by Roger Chin

The pain from within,
The flames in our brain.
Fatigue without end,
How workhorses strain.

May light shine on M.E.,
For the world to see.
It may be too late,
Please remember me.

A New Day Tomorrow

By Judi Warner

“Evoked Potential”(ceramic: 15” H)

By Christopher Skura

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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