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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.

Ode to Hope

Ode To Hope. by David Hefferon

Little did I expect a carer to be
But that is the life with a wife and child with M.E.
It is a job of love and not of choice
It is up to us to give the “missing millions” a voice.

Some may say it is a chore and a sacrifice
But to care for loved ones, you never think twice
To care for someone with M.E. is more a privilege
The medical abuse received is more a sacrilege.

Ignored and abused at the hands of the psychiatric community
Still they refuse to acknowledge the auto immunity,
The harm and damage caused by the PACE
Is now being shown to the biggest medical disgrace.

Abused, ignored, accused and persecuted
The doctors soon discover, the millions will not be muted
Worst of all is the paediatrician
Who refuses to accept M.E. as a medical condition.

In comparison the abuse of adults is mild
Compared to what they attempt to do to your child
The time has come for them to get off their psychosomatic perch
And start reading and learning the biomedical research.

As long as Paediatricians attack our children with gaslighting
Parents will protect their children and keep on fighting
As long as they continue to use fake charm
They should remember Primum Non Nocere – First do no harm

For all those still struggling to cope
Be brave this ode comes with a message of hope
Belfast, America, Australia, Denmark, whichever nation
There is always HOPE thanks to the Open Medicine Foundation

As the biomedical research archive becomes fuller and fuller
We must all give thanks to Davis, Montoya, Coyne, Speight and naturally Tuller
These are to name but a very few
To all the good Doctors our thanks is due.

Hope springs eternal of that I am sure
As all these good doctors strive for a cure
To give these millions back their voice
In hope let us all rejoice.

Wren

N/A

I Want My Life Back

By Terry Greenlay

Who are we, but the ones for whom time stands still
we wake to a new day, faced with nothing more than forgotten yesterdays
in unison we cry out, a cacophony of uncertainty and sorrow
i want my life back – it goes unanswered
Who are we, but those friendless souls left without
we wake to another time, upon paths we once walked before
together, we are forgotten, bereft of the capacity to be who we once were
i want my life back – a common echo unheard
Who are we, but people, spirits locked within these mortal shells
we wake without dreams, yet try to savor each and every moment
united within ourselves, for there are no others to understand….truly understand
i want my life back – deaf are the ears that hear but don’t listen

Elisa

By Anonymous

In honor of a friend with ME/CFS

Lucy & Ricky – Abstract Horses Diptych

By Terri Deskins

Artist’s Note: In the late 1950’s my grandfather designed some midcentury modern abstract horses for my grandmother who absolutely loved horses. His original design was made out of wood and laid out on a framed wood panel. My father nicknamed them “Orses”. We recently found his original patterns that had been stored in different family member’s basements for over 65 years. The pattern he used was in perfect condition and placed in an old brown envelope with his notary stamp embossed on the front! I wanted to honor him by using his original patterns. I used acrylic paints and mediums similar to my other raku style work to get the crackle texture you see inside each of the shapes. Every crack is painted with a tiny brush. This diptych is named after one of the famous “couples” from the 1950’s & 1960’s television shows – “Lucy and Ricky” from the I love Lucy show. As a young child, I spent many hours with my grandfather in his woodshop and am grateful that I inherited his love for creating and making things with his hands. Each of the two paintings are on 14” x 26” x ¼ inch birch wood panels. They are permanently attached to a modern black “floating wood frame” (each frame is 15.5” x 27.5”), and are wired and ready to hang. Available for sale on my website www.terrideskins.com and will donate 30% of the proceeds to OMF. Note about artist: Terri Deskins is a contemporary and abstract artist living in southern California. She has ME/CFS and paints when she is able. Her work can be seen in galleries in Laguna Beach, CA, Dana Point, CA, and La Jolla, CA.

Swimming Upstream

By Christina Baltais

Life Jacket

By Karen Napier

Sometimes in the river of difficult circumstance,
I forget that I am already wearing a life jacket.
Lying face down in the water, I fear I will drown.
Then Jesus whispers in my ear “Turn to me.”
As I roll over to look up,
my face comes out of the water that is overwhelming me.
I take in a deep breath of hope.
I am safe; I was safe,
I just forgot to make use of the life jacket I was wearing.
Keeping my eyes on Jesus;
keeps my face out of the water of discouragement.

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

Peace

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 ❤️

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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