Wednesday, May 1, 2013

Take a walk with me a poem for Porphyria Awareness Week by Victoria Harrold


Written by Victoria Harrold

Take a walk with me
Spring is coming
Excitement fills the air
Jumpers replaced by short sleeves and floaty skirts.
Who is to get the better tan?
Not me, that’s for sure
For I live in the shadows.
I long to wear short sleeves and bright, floaty, short skirts
But for me
I have to cover head to toe.
For me the sun hurts.
Clouds are so amazing
Each with their different shapes and details
They even have names like Cirrus or Stratus
For me these clouds offer safety
From the sun’s harmful rays.
Oh how I long to be sat for hours
In a daze, enjoying the warmth
That the sun shares with so many.
I have EPP
So that cannot be
Hopping from shadow to shadow.
Which pair of gloves shall I wear today?
Does that hat go with that long skirt?
What if someone notices me
And mocks me
For I don’t dress the way they do.
People struggle to understand a disease you often cannot see
The pain is so intense
More than anything you could imagine
Independence gone
Oh please stop
For I cannot take what you do
For why you hurt me so
People try to capture it
By saying things like “Oh I have hives”
Or “It’s just like sunburn”.
This is not sunburn!
This is not hives!
This is my body crying “What’s happening?
Why do I burn?”
Off indoors I must go
Watching everyone else
People looking at me in strange ways
For they cannot understand.
I want to go out today
But what does the weather say?
“A bright and sunny day we shall have”
Oh no, here we go again.
Alone I often feel
But now I know of those who suffer just as I do
Pain, swelling, blistering, hallucinations
Yes, we know pain
For this is not your average sunburn.
Modern lights are the way forward
They are amazing
They save so much in electric.
For me with EPP
These lights make me sick
For they are just like the sun
So bright
So painful.
Shopping now a chore
For I’m not sure
Of what is above my head
Until my face feels the burn
And I know that
“here we go again”
Leave! Leave! Leave!
Vampires suck for we have the same branding as them
We have EPP
We cannot absorb as much iron as others
Our body rejects it
So we are pale
And tired.
Genetics we are
A lab study.
Faith has kept me strong
In the hours of my pain
I am given hope
That my God is with me
I’m not alone
He understands
He doesn’t question my sanity
He keeps me going
For I have EPP
Take a walk with me.


©Victoria Harrold April 2013
 Remember....Research is the key to your cure!

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