My name is Ben,
I am 23 years old.
I am the inspiration behind Epilepsy Sucks UK 🙂
My mum is Sallieann Gould, creator of Epilepsy Sucks UK.
Mum wrote this about me…
The Impact Of Epilepsy
The 16th of July 1992 the comet Shoe-maker Levy Nine collided with Jupiter.
While I watched the account of the collision with my partner our 18 month old son, Ben sat between us. Our own worlds collided and crumbled as that’s when epilepsy first made a huge impact on our lives.
Second by second
Bens arms suddenly stretched out.
With a feeling of dread I turned to see that his eyes had rolled back.
What was happening!?
In a panicked heart beat I watched as his shoulders pressed hard against the sofa back so forcibly he could have pushed through the upholstery as if matter didn’t matter.
I scanned him…
His toes were pointed and stiff, the whole of his little body was stiff!
He laid horizontal and rigid for a life long few seconds in my heart.
I watched helplessly, I didn’t understand?
I shook and cried glued to the spot.
His whole body then jerked violently in rhythm to a choking sound.
The thought that he was dying hit me!
One minute and counting….
Ben needs help!
I need help!?
My partner scooped him up and ran with him out of the front door.
We knelt on the lawn, both shaking and crying shouting for a neighbour to twitch a curtain.
We didn’t have a phone back then, we had only just moved into our first family home.
Everything we owned had been given to us by an Aunty whose neighbour had died in old age.
Here was my baby dying before he had lived two years.
He let out a huff.
Then no sound.
I’ve seen movies.
I have seen the last breath portrayed.
I thought this was his last breath scene.
With my ear to his chest I heard his little heart slowly thumping comforting me with a slow I AM HERE MUM rhythm.
He was breathing and so I could breathe too.
The men with the flashing lights arrived.
After telling them what happened they asked if he had epilepsy.
I had an English teacher with Epilepsy.
She was skinny, gaunt, miserable and to be avoided in case she snapped for wearing my tie skinny side out.
That’s not my baby, is it?
A trip to hospital revealed he had experienced a tonic-clonic seizure.
‘It’s probably febrile, you can go home it won’t happen again’ they said.
10:15 the next morning proved them wrong.
A few weeks later, a letter dropped on the mat, an appointment to see a paediatric Dr.
Ben’s birth, our family tree and other strange questions were asked.
Hang on? Those strange movements where he flings his arms out on falling asleep are seizures too?
But he has done that since he was born!??
I felt deep guilt, why did I not know that this wasn’t ‘normal’ why had nobody told me?
Did I do something when I was pregnant? Is it because I was pissed that time before I found out I was pregnant!?
I drank coffee and ate junk food. It’s my fault! I am a stupid naive ignorant bitch!
The feelings of self loathing were real at the time.
I now know it wasn’t my fault as it transpired that Ben has Lennox Gastaut Syndrome with a probable genetic cause.
I vowed to learn everything I could about epilepsy that day!
I knew if he stood any chance I had to be one step ahead and always know what to do.
I am still learning everyday, helping Ben and helping others along the way.
Vote for us, please x