Each zebra body is very wonky, I feel like a knackered donkey
Damn joints go out more than me, but you can never truly see
Such daily battle through the pain, living with genetic chains.

I have Ehlers-Danlos Syndrome (EDS) Hypermobility Type III
and wrote this little poem for EDS awareness month in May.

Why the zebra? Trainee doctors are told ~ when you hear hooves think horses not zebras.

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EDS Awareness Month allows us to highlight that it is imperative that accurate knowledge of the Ehlers-Danlos syndromes and hypermobility spectrum disorders is increased within the medical community.

We are fighting to ensure our conditions are recognised and that, with the new criteria, patients are more likely to receive an early diagnosis and consistent care and management plans.

May Awareness Month is a time for coming together as a community and fighting for change. This is an opportunity to get involved with your charity, help raise awareness and educate others about the Ehlers-Danlos syndromes and hypermobility spectrum disorders and the issues faced by patients due to misdiagnosis and lack of knowledge about the conditions.

It is a time to work together for change and we need everyone to get involved; we all have a part to play. Distributing leaflets to your local GP surgery, telling 10 people about EDS, fundraising and sharing on social media – there is a way for us all to help. Find out more about your local support group and join together with us via social media – let’s amplify the message and make our invisible VISIBLE!

Living the Lie

For the first time in our separated lives
I learned about you and me only last week
Realisation of a whole life misunderstood
Two worlds wired in complete difference
How could we ever communicate
Our language of disparate tongues
Both locked in this same world
By our shared gene pool of perception
Yet poles apart divided connection
Talking, not talking
Craving, avoiding
Extrovert, introvert
Opposite sides of the spinning compass
North and south, east and west
Learning by dysfunctional example
Masking any authentic truth
Exhausted from repeated pretence
Unaware that our heart caused offence
Natural honesty lay just inside
Whilst acting out a living lie

Teddy of the Window

Teddy of the window is old and tired
Flaked by age he wants to retire
He’s seen the years come and go
Tears of sadness or when joy flowed

Half gone, severed, unable to walk
Legs all crumbled, mouth can’t talk
What would you say little teddy bear
Or are you too old to even care

Black eyes stare from marked glass
Two torn specks pierce at my heart
Nose clinging to your holey face
Framing blue skies in heavenly space

Jagged cosmos drawn right through
To another side we never knew
Detached plush peels to fall
Ears fail to hear the homing call

From the house you watched for years
With all the laughter; with all the fears
Faraway gaze looks inside or out
Two-way window on a house of doubt

Crumbling teddy-dust in scattered piles
Imprints on a world of furry smiles
Once your shape has finally gone
This home won’t hear your fluffy song

Guardian teddy whose spirit can’t die
Ghostly outline marks where you lie
Gone are the arms, gone are the legs
Keep your head when nothing’s left

Life on a window so crystal clear
Slowly fading as you disappear
Black skies washing you far away
Teddy memory that never could stay.

Outside the Door

Seeing your faces
Frozen in time
You were there
Now gone
Just outside the door

Blue lights strobed
Filling the hall
Horror on the bridge
Not in here
Over there
Just outside the door

Lives being taken
Worlds destroyed
Through the glass
Behind the glass
Nowhere to go
Stoic business
Patient waiting
We’re here
Safe inside the door

You’re out there
In the open
Barely outside this door

Uniforms muster
Guarding protecting
Saving not saving
Doing their best
Blue spring light
Grey clouded day
Dark skies shroud
Unholy scenes
Dismantling life
Meaningless pain
Our eyes saw… sore… soar
Right over there
Across the bridge
Just outside that door.

I wrote this poem the day after the Westminster attack. St. Thomas’ Hospital was locked down. A receptionist remarked that it was safer inside than out there. We were in the lobby that looks straight onto the bridge.

If any staff from St. Thomas’ ever find these words, my gratitude goes out to them for their calm management of the situation. For taking care of all the patients waiting to go home. And for getting me back home safely.

The Robin

Aware of company
I turned to look
And you were there
So close and daring
Dark round eyes watching
Fixed by your patient stare

Sensing your need I froze
‘You’re all right – stay’
And you waited quietly
Not to alarm I moved with care
My heart jumped with your three hops
Straight into the bird bath
Frantic splashing
Then you stopped
Looking me in the eye
Slowly I dropped to perch
On the edge of the wooden bench
Holding my breath
For this moment in time

Back in the bath
Splash and stop, splash and stop
Splash, stop and stare
So close so trusting
From the red holding
My fluttering heart
Your fluttering heart
Eyes met once more
Before you bobbed a bow
Took your leave of my garden
Entrusting me to the silence
With no more than a ripple
On the still water of this life.

Written by Debbie Freeman