My Epilepsy Awareness Poems

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Aoife
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My Epilepsy Awareness Poems

Postby Aoife » 05 Nov 2012, 12:11

I've gotten involved in epilepsy awareness recently (I have epilepsy) and I've entered an art contest and in addition to that I've submitted art in several mediums including writing poems. They are in the style, from what I understand, the "Bardic method" meaning they tell a story rather than follow a pattern. Becoming involved in this has really helped "the healing process" for me and it's become more than just telling people about what it's like for me and for others it's EXPRESSING it and it really helps suck the pain, worry and doubt out of me! Art is truly wonderful! Please let me know what you then of them! (They are long, sorry. No need to finish both if you don't want to) :curtsey:

#1 Am I Dreaming?

The blurred storm slowly gains focus
The faces pushed in are so close to mine
They shout and they cry
But I am deaf to it all.
Was it a dream?

Dizzily I sit up
I wipe the back of my hand across my face
Blood stains the ivory skin
I stare fascinated.
Such contrast!
It hasn't sunk in yet.
Am I still dreaming?

Blood on my face, shirt and hands.
There is a mess to clean up!
I try to stand up.
But these grasping hands hold me.
They come seemingly from nowhere and everywhere
They haul me up
Put me on the bed
Floating between that inky pool of blissful darkness and
these worried faces.

Seizure...seizure....seizure
The susurrus voices slowly bring me back
Not again! I worried them again!
The tears start to flow and I cry out
I'm sorry! I'm sorry! I'm so sorry!

The floating faces seem exasperated that I would apologize.
The apology becomes my mantra.
I'm sorry. I'm sorry. I'm sorry.
I'm sorry. I'm sorry. I'm sorry.

My head is pounding now and I wait for people to tell me what to do.
Already knowing that I will say no.
No ambulance. No hospital.
This has happened all before.


#2 More Than You Let Me Be

My eyes open and they won't focus.
I blink and I see the faces.
They look at me with fear and with worry.
The convulsion, blood and the guttural screaming frightens them
It scares me too.
"It's like you knew" they said.

It's like I knew...

That's the catalyst and my life as a glass figurine begins.
Viewed as thin and fragile and to be set up on the shelf.
Pretty but useless.
I pretend like I don't notice
I know they are watching me.
Don't take my usefulness from me.

I'm the ticking time bomb. I'm the danger.
How foolish are you? Don't you know?
I'm still the same.
I'm more than you let me be.
I'm still the same.
Tell me, who do you want me to be?

The way you treat me makes me feel different.
Tainted. Sick. Diseased.
I clench my fists and smile.
What you don't know
Can hurt me
Don't make me different.
I'm still the same.

I reach my low and float in the darkness.
I see the light. My light.
But there is something wrong. It's not white.
It's red.
I'm more than you let me be.
Sad thoughts turn into depression
From depression into rage.
Why won't you let me be more than a disease?

My vulnerability doesn't mean I am without a weapon.
Even if I get knocked to the ground
I will pick myself up and begin again.
Lock those black truths up again.
And turn my face towards the sun again.
I feel the pure white orb of my soul and think.

I'll show you that I am more than a disease.
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Lauralyle
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Re: My Epilepsy Awareness Poems

Postby Lauralyle » 13 Nov 2012, 13:19

These offer such an insight to someone who doesnt have epilepsy, and dare I say it, amongst the painful vulnerability which you describe there is also a hint of a place gone to which might be quite extraordinary, even with no conscious knowledge? thank you for sharing this moving work.
Blessed be.

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Aoife
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Re: My Epilepsy Awareness Poems

Postby Aoife » 17 Nov 2012, 04:22

Thanks for replying.

I've heard stories from people that have experienced some extraordinary things...like this girl said she had visions but he doctor called them "hallucinations" but what she sees before she seizes has really influenced her artwork. She asked me if I see these things and I told her no. It comes on too fast and unexpected and it's just like someone whacks me with a hammer and I'm out. Someone just flips the "off" switch. I'm on certain on what type of seizures she's had but I'm tempted to guess petite mals. People with those tends to know when they are going to have one...so perhaps those sorts of people are also prone to having visions/hallucinations.

The artist prefers to believe she is seeing glimpses into another plane of existence. I like her version better than her doctor's.
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