Poetry entry living with Ehlers Danlos Syndrome

By Ellen Smith Thursday, September 13, 2007

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Suspended in Liquid 11/1/06

I twist, it snaps

I bend, it pops

I sit, it shifts

I walk, it rotates

I lay in bed and don't dare roll over

I am suspended in liquid

Your body has strong ligaments, tendons and muscles

My body is held together with muscles only

Your bone structure is strong and secure

Mine is suspended in liquid

I haven't given up

I work those muscles daily

But, I seem to be losing the battle

My joints sublux constantly

So many things I did before are gone forever

EDS has me suspended in liquid

Comments (3) | Add comment

bethany

1/11/08 6:24am

I too have Ehlers Danlos Syndrome. I can relate to your poem and want you to know that your words tell a lot about what we live with and experience each day. Do you belong to any of the other EDS groups like EDNF.org, EDStoday.org, CEDA on yahoo groups or the EDSToday group on Facebook.com ? I have met hundreds of others with all types of EDS from around the world and it is comforting to have friends that know first hand what we go through on a daily basis. I think even our families can have a hard time grasping the pain, dislocations or subluxations.

9/18/08 8:16pm

Dear Ellen,

I am a fourth year nursing student in Alberta, Canada. I am completing a case study on a patient I have been working with; he has been diagnosed with Elhers Danlos-Syndrome for the past 15 years. I was wondering if I could get your permission to share your poem with my colleagues when I present my case study in a few weeks. If this is ok with you.

The reason for this case study is to help medical staff become more empathetic/understanding/aware of the frequent hospitalizations/patterns of patients living with this syndrome.

I thank you for you time....

Sincerely.

D.K.

lenoxsmith

9/18/08 8:59pm

DK,

Feel free to use the poem. If you need a copy, just click my name to send me a personal message and let me know which one you want.

thanks for using it!

ellen smith in RI

Poetry entry living with Ehlers Danlos Syndrome

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