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.

I remember and I await

February 7, 2019

By Angela Morrone

Conflagration

February 4, 2019

By L. Carol Christopher

Angelina Jolie

February 4, 2019

By Michael Todd

Ron Davis

February 4, 2019

By Michael Todd

Feeling ME/CFS

February 3, 2019

By Anonymous

I hurt so badly I need hope …
The pain is shocking my brain like I the metallic cap of an electric chair
I scream loudly then silently as my voice echoes like the wind in a deserted house
Will you listen, really listen?

I hurt so badly I need hope …
The pain is freezing my muscles like I am stuck inside an arctic iceberg
I count with the ticking clock waiting for the melting that slowly comes
Will you give me warmth? Really give me warmth?

I hurt so badly I need hope …
My energy drains like I am a tree falling in the forest
I wonder if this is the end as I fight slowly than quickly yield to ground
Will you lift me up? Really lift me up?

I hurt so badly I need hope …
My surroundings swirl around me like I am a spinning top
I look for stability like a seasick sailor dancing on deck
Will you throw me a lifeline? Really throw me a lifeline?

Gone are the hopes of a career listening to others …

Gone are the hopes of providing warmth to the homeless …

Gone are the hopes of hiking deep into the wilderness …

Gone are the hopes of catching the sea spray while sailing …

Here are the days of listening to pink noise …

Here are the days of counting pills while laying on warm jade stones …

Here are the days of laying on heated jade stones …

Here are the days of watching wildlife from a zero gravity chair …

Here are the days of sea salt baths and chi machines …

It is You who Unites my Heart with Hope!

ON THE BAD DAYS

February 3, 2019

By Edith Kaplan

“It could be worse”, she said

And that is certainly true

But my mind screams back loudly:

“IT COULD BE BETTER TOO!”

“It’s just a cold”, she said

If only that were true

My tearful heart cries out

Oh, if you only knew.

Nothing with this illness is “just”

In many more ways than one

It may be a small sneeze for you

But my whole life comes undone.

The private pain

No one can see

As I watch my life

Fall away from me.

Come back, I plead

I want much more

Not less and less

Than I had before.

“It is what it is”

Some like to say

But platitudes don’t help

Keep the grey away

I must dig deep

Within my core

To find those sparks

Of my life once more

And to accept the fact

That they cannot see

From the land of the healthy

What life’s like for me.

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