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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

Thank You OMF

I venture out into the sunlit day
pink lipstick, dangling earrings, bright smile
too soon my head hammers, eyes burn, muscles ache
I stagger back to bed dazzled by my brief
encounter with the uncommon world
but
i am no longer the lonesome warrior
struggling in a war I cannot win
looked on with disdain and doubt
feeling shamed by disbelief

how can I begin to tell you
how it feels to know that now
there is a longed for hopeful future
just within our reach

Solitude

There is beauty in solitude.
Yet, also loneliness.
I am confined by four walls
Unable to escape.

Sunlight streaks through the window,
But I cannot feel its warmth.
Only the cool breeze of missed opportunity.
The light fades revealing another lost day.

Others stop by to listen in,
Staring at my curiosities.
Eventually they must leave.
I am forbidden to follow.

Each day ends with disappointment,
As I drift off into the nothingness of sleep.
Each day begins with sadness,
As I face the solitude once more.

Within four walls

By Samantha Scott

Within for walls I wait and hope

Within four walls I breathe and cope

Most of the time I cope so well

But, just sometimes I don’t know how

How to deal with the crushing loss

With Time’s great clock, now green with moss

Physics’ avaricious appetite

Will never defeat my cause to fight

To fight for freedom, for choice, for air

I will breathe – I will live – I will not despair

For whilst there is a heart that beats within

Within these four walls a warrior grins

You may have purged a life that could’ve been

But you will not take my hope nor my determination to win

You waged this war but I stand strong

Within these four walls I see the sun

It blazes brightly with defiance:

The darkness will not overcome.

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

I have M.E but will not let it define me…

By Collette Wallace

I have M.E…

I aim for it not to define me
and be all people see

I love socialising
Find traveling mesmerising
I loved working with multiple brands
And seeing live bands

I am now mainly bedbound on my own
But my love for my interests has only grown
They will always be part of me
And I will not solely be defined with M.E

Despite being constantly ill
Always wishing for a magic pill
I strive to work through the pain
And learn to dance in the rain

Be kind to yourself each day
Push the frustration away
Make a positive mantra & repeat it
To help strong mental health & keep it

Fight feeling down
Reverse that frown
Don’t shed a tear
Smile ear to ear

Keep your head up high
Look at the beautiful sky
Not today, go away,
tomorrow is new start to the day

Ignore friends that dropped you fast 
Hold close kind friends that tightened their clasp
It feels like there is no end in sight
But please like me never give up the fight

Clock

Like a coin pusher in a game parlour whose tokens
rarely reach the ledge I herd before me
all those things I ache to do. A penny
for a plan, naughts and naughts of them:
books to read, people to meet, work to make,
exhibitions to see, borders to cross, thresholds
to leap over. And the heart pounds,
and the brain shouts: syncopation!,
and the clock turns its face away –
tick tock, tick tock, hold that thought,
tick tock, tick tock, let it drop.

How many spend their days in darkened rooms,
stretch time unseen, unheard, unheeded?
I waver, say us, say them, and us again.

Audio: https://soundcloud.com/marion-michell/25-january-2019-11-12-13

Swimming Upstream

By Christina Baltais

I am me not M.E

By Collette Wallace

I have M.E…

I aim for it not to define me
and be all people see

I love socializing
Find traveling mesmerizing
I loved working with multiple brands
And seeing live bands

I am now mainly bedbound on my own
But my love for my interests has only grown
They will always be part of me
And I will not solely be defined with M.E

Despite being constantly ill
Always wishing for a magic pill
I strive to work through the pain
And learn to dance in the rain

Be kind to yourself each day
Push the frustration away
Make a positive mantra & repeat it
To help strong mental health & keep it

Fight feeling down
Reverse that frown
Don’t shed a tear
Smile ear to ear

Keep your head up high
Look at the beautiful sky
Not today, go away,
tomorrow is new start to the day

Ignore friends that dropped you fast 
Hold close kind friends that tightened their clasp
It feels like there is no end in sight
But please like me never give up the fight

New Dawnings

God, turn back the clock of suffering
And take us to a time of innocent childhood vitality
Where in the caring arms of your love
We may play upon a sunlit lawn
Until exhausted
We fall thoughtlessly through rhythmic waves
To a sweet, luxuriant sleep.
And when we awaken to the beckoning rays of light
Let our hearts open up with joy
To the beauty of the things around us
Seeing only thy work
So that we may be free from the monsters of distress
Which permeate the fragile tissue of our minds.

What Will You Do?

What will you do,
when shiny and new?
Your lottery win,
that is overdue.
Who will you tell?
and how will you act?
When a magic pill,
transforms you back.
Will you rise from your bed?
and jump for joy?
One hundred times?
like a windup toy?
Will you run up the stairs,
Just because you can?
And overtake,
and old aged man?
Will you see your GP,
and laugh in his face?
Challenging him,
to a three legged race?
When he loses bad,
will you look in his eyes
and suggest to him…
Graded exercise!

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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