Hope & Heart Unite for ME/CFS
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.
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 Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (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
Do you see me lying here?
I’m real. I feel.
See the picture on the wall?
That’s me, how i used to be.
Mute inside this immobile form is me.
Compressed, raw, real, feeling, thinking.
I don’t want to be a burden,
so I don’t say too much.
But there are days I would cry, if I could.
But I can’t breathe if I cry.
Hearing every sound.
Clocks ticking, doors banging, people talking, laughing.
It steals my energy. Hurts physically, emotionally.
But you can’t see.
The door keeps banging. The clock keeps ticking. Lights too bright, odours too strong.
If I’m not the perfect patient will you still care for me?
Another week gone. Another month. Another year.
But I’m still here.
There’s a gulf growing. We live in different worlds you say.
Yes we do but I want to connect with what used to be our world.
But you don’t have time.
I keep still, trying to be no burden.
Inside the anxious thoughts come, hit a high.
I wait quietly for them to go.
I walk them out through the door of my mind.
I imagine the sun still shining above the clouds, the flowers, the scent of rain, the feel of water, a hug.
It’s so long since I’ve had a hug.
In slow motion I drink, eat, weight shift to prevent bed sores.
I hear you escaping to the beach, planning time away, another holiday.
You’re trying but feel so helpless.
Rejected by the illness, you want to run away.
Let’s run away together.
I’ll imagine the sun above the clouds.
You’ll feel the water when you swim.
Joy! Still there.
Can you stay if I’m the perfect patient?
If I’m not a burden?
Inside this quiet form is me.
Bag of bones that I am.
But I dance in my mind to songs I remember,
I write stories, plan for a future.
I wonder how I can help my kids.
I still care.
Listening, always listening.
The sound of footsteps.
The kitchen sounds.
I used to have a home
now I have a room.
I used to have flowers
now I have weeds.
But there’s a beauty in weeds.
I see them dancing through the crack in my curtains.
Graceful grasses seeding, birds balancing on the stalks.
Subtle colour changes.
Can you see me, can you hear my heart?
I’m the me you see in the picture on the wall.
Sit awhile, don’t run away, please stay.
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.
By Jenny Strachan
We’re taught from a very early age
Make a mistake and rub it out.
Now I open my diary and start rubbing out my life,
Life that is measured by what has been erased.
Rubbing across paper with a meditative rhythm
Thoughts and memories moving back and forth.
Thai rubbings are Buddhist monks’ mirror images.
My rubbings are the mirror of my life
Recorded in the faint erased impressions still left on the paper.
Japanese fisherman rub rice paper over fish, making fish impressions
To record the catch of the day.
But as I reach for my small stick of rubber – I do not record my life – I erase it.
There are no impressions left of what I have missed.
Yet every year I select the most beautiful diary
To mark my plans for the future.
As I hold it in my hand – I am holding onto hope.
In honor of a friend with ME / CFS
By Kat Code
Come, let me look at you
It’s okay, I won’t bite
Just enough to let some blood
Tilt your head back
Open wide, eyes and mouth
Say Ahh, don’t blink
You look like you could use a good cure
Come, sit down next to me
Let me pump you full of salt
Pull up your bootstraps
Hang you from the rafters
For a fortnight or two
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
Did I say migraine?
Who loaded this freight train
Insomnia, sleep apnea
I got the Fibro blues.
It seems like only yesterday that I was turning
Cartwheels in the sand. Sun shining down like
Bursts of freedom. It seems like merely hours
Ago, my dog was running and jumping through
Rural fields, hunting rabbit with not a care
In the world. How many minutes has it been,
Since I traveled to distant lands, strong as a
Warrior and filled with unburdened hope?
I am sure it’s merely seconds since I was rowing
My dinghy to land, riding my bicycle, laughing
And dancing and drinking coffee with friends,
Reading for hours, taking long walks to the sea.
And yet now, how time stretches before me like
A vast desert, arid and desolate and even hostile
In its moody monotony. Moments sweep by like
Unseen particles, and time is lost for all eternity in
endless reveries and gatherings of energy to move
from one action to the next. How did this meaning
of time seem to change, like an apparition seen for
just one glimpse then gone? Perhaps I am merely
Dreaming, and I will awake, suddenly and knowingly,
Realizing I was only sleeping, and I will arise eager
And ready for any new beginning as I greet the day
With purpose. If only it were so, for lately and a while
Now, I find myself struggling as if gasping for air,
To climb my way back into the womb of my dreams,
And to stay there, where reality is stranger than life.
By Valerie Taresh
When I thought the world was
I needed to be out of there
please just give me the chance
And see it from my side.
All I need is to be on my own
to go out there- to at least try.
I’ll call ; I’ll come home.
I had mountains to conquer that
Became small hills.
I was too busy going nowhere forgotten dreams now only in clouds
What next – what’s first
Too short to last
I ran so fast so far
Just how I wanted life to be
The memories I made
weren’t memorable I suppose
Faded before they got to me.
So many things to do
What can wait – what’s last
What doesn’t need done?
I’ll go, I’ll see or I’ll do those things
As soon as I’m a bit more free.
Now the house is too big
It takes awhile
to get from here to there
I often have to wait just one,
just two, wait- oh Lord, please
help me to the chair.
Oh God can’t you see my side;
I haven’t done it all.
I haven’t seen my kids enough,
I’ve children yet to spoil.
I always thought i could stall
for time before
my name was called.
My world grows smaller with
every dawn, the veil is draping low.
I’ll stay just a little while more;
I know it’s time to go.
I’ll be okay – I’ll be right there,
I’ve to finish the unsaid and undone.,
My memories left in loves on earth
My heart to my daughter and sons
May my life be a lesson for my earthly clan.
Don’t hurry, don’t worry, trust wholly
that in infinity –
There exists a Divine plan.
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.