We Only Bend

To all of you reading this poem is about EDS (Ehlers-Danslo Sybdrome) a herditary disease that affects connective tissue like skin, joints, bones, muscles, and even blood vessesl. So basically everything. 

Common characteristics are extremely loose joints, hyperelastic skin that bruises easily, and easily damaged blood vessels, and subluxations (partial dislocations). For more information please visit http://www.ednf.org/. I am hypermobile. 

 

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We Only Bend

I am not the bearded lady at the circus, 

On display for you to sink your eyes into like talons

Or for you to reach out and grasp tentatively, 

To see if I am flesh and blood or a cyborg

A metal puppet of wires and computer chips, 

With a chest more hollow than the Tin Man. 

 

 And if I am, then you can be glad to be you. 

 Because standing next to me, makes you feel like Cinderella 

After her foot houses the glass slipper, and Prince Charming’s heart. 

 

But if you touch me, 

And feel the recoil of skin, 

The fluttering wings of a pulse trying to be free, 

You will have to feel ashamed, when you realize, 

I am human, too. 

 

I am not the rubber band you can expand with the pressure of weighted looks 

Pointed smiles to mask the condescension of being 

Normal, 

Beautiiful, 

Loved,

Human

The fingers that latch onto my skin aren’t designed to stretch me

Like a rubber band until I reach snapping point. 

 

And if you hear the pop, you’re hoping to hear 

Louder than a firework on the Fourth of July,

Or the ringing of liberty bell, 

Or the shots heard ‘round the world,  

You’ll wonder whether it’s a dislocated joint 

Or the sound of a geriatric heart 

That’s had too many compound fractures 

 

You hope it’s just a bone 

Because that’s what x-rays, plaster, and the ER are for.  

Time is the best doctor. 

 

But how do you mend the contorted skeleton of a heart? 

Someone please tell me.

Be sure to tell my doctors.  

They sure as hell don’t know. 

 

I am not a dead leaf 

That the boots of society trample on 

And that crunch you hear, didn’t come from me. 

And the embers in your eyes are not the gasoline 

To ignite my wooden dreams into ashes and soot. 

Under your fire and brimstone 

 

I am a tower of dominoes 

So go ahead, pull one from the bottom 

And watch me collapse like a pyramid 

Of unsteady, underweight high school cheerleaders 

Heave into me like you’re the bowling ball

And I’m just the pins. 

 

But know this, 

I am more than three letters, EDS. 

I am more than my disease. 

Your words may were once the osteoporosis of my soul. 

But I’ve had years of drinking your acid, 

And I mixed it with calcium. 

And the acid corroding me from the inside has neutralized. 

My bones are finally strong, 

And so am I. 

 

Even when my joints are still weak, 

They are flexible 

While under my pressure, you will be fossilized 

Folding in on yourself into a stone tomb 

That will be your legacy,

Fuel to the fire still burning  a million light years into the future.  

 

People with EDS, people like me, 

We don’t break. 

Despite what you think, we aren’t porcelain egg shells 

For eager fangs to penetrate. 

 

We may look like glass, but you’re wrong. 

Take another look under the microscope. 

And you will see, we are Plexiglas. 

And we don’t break. 

We only bend.

 

Comments

firelily

I am doing this for all the people struggling and coping with EDS or other invisible disabilties. Please raise awareness for this rare disease by sharing this poem! 

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