This was published on the website Empowerment, Epilepsy and Elephants on the 13th June 2013
Dear Jeremy Hunt,
I don’t know you and you don’t know me, but your name has unfortunate rhyming potential… I’ve never written to a politician…. tears are streaming down my face and my heart’s thudding in my ears…. the buck has to stop somewhere, someone must be responsible and as your fancy job title ‘Secretary of State for Health’ implies, I guess that someone is you.
Yesterday I had my first interview with ATOS, the company you’ve hired to assess disability and eligibility for benefits. I want to tell you what happened to me because – you have no idea the effort this is taking to type – because, I have a voice, I have a family and support. I am lucky, others are not and this, this thing you are doing cannot continue to happen:
I guess my life is pretty average in political eyes,
Sure you know the type,
Married a Colombian (I know that’s not your department!) and have a loving family,
Oh and I have epilepsy too!
Got alright grades at school, even went to Uni,
But epilepsy chased me and career after career ended with epileptic-complications.
Discrimination, ignorance and bureaucracy ruled my life
Red tape and disability laws wrapped around my heart
Seizures increased and I developed Chronic Pain
I couldn’t walk, couldn’t stand, sit or hug my loved ones,
Signed off work I lost my job, my tax-paying-40hour a week job.
Brought up to Carry-On, I did so!
Are you listening? I DID SO!
In agony and alone I balanced a laptop over my head and forged a new career as a writer,
I didn’t want a penny of your money.
I got some freelance work but my mind could not sustain it.
I saw every Doctor going, spent every penny too!
You offered help, so finally, battered and bruised my ego shattered into shards, I accepted.
My GP warned me ATOS would not be good,
I was half prepared for the hours long wait
The frozen smile of the receptionist in an underground cell.
The smell of piss and blood splattered on the filthy walls,
I’m well versed in the caring embrace of the NHS décor!
I was not prepared to be interviewed like a criminal,
My husband first told that any notes he took would not stand up in court.
In court?! I am a patient, a person, not a convict. Aren’t I?
The ignorance of your ‘health-professional’ floored me. Left my mouth ajar.
A flys still buzzing around it now!
Did I mention that when I am asked about epilepsy I have flashbacks and have been treated for PTSD? No, OK then.
ATOS don’t care anyway.
Ask away then, as I see images of seizures, blood pouring out of my chewed up tongue,
Ambulances roar in my mind and the desperate faces of my loved ones are scorched onto my eyelids.
I writhe in agony, but hold it in.
I wouldn’t want you to see what I see.
So go ahead, ask me.
Ask and I will answer from my war, where limbs are ripped off and seizures never stop.
She asked me what Juvenile (Epilepsy) meant if I was 29 now.
She asked about dates of seizures so fast my head spun.
She asked what my recovery time was like? For what I asked? What type of seizure? She looked at me blankly Well which do you have?
How could she not know? I have an array. Which one first?
NOTHING…………………an absence seizure hit me………
What did she say? Tears stung my eyes, what?
Panicked, I reached out for my husband.
She did not seem to register or recognise. How could she not see epilepsy? When it hit her in the face?
Surely some training has been done?!
Epilepsy is only THE MOST COMMON NEUROLOGICAL CONDITON.
My tears are hot and furious. Scalding my throat.
– When was your last seizure?
– One second ago.
– Do you have a drivers licence?
– ……………………..how could I?!
On this went, on and on,
I didn’t understand. Couldn’t comprehend.
I knew she would fail me. Declare me fit to work.
I was articulate and clean,
I stood and walked in, in some ways I’ve healed a lot
I don’t want your money.
The fact I still see a psychotherapist is neither here nor there
You rate this person as knowledgeable enough to judge me?
This un-biased stranger with a computer and a tick box and a bank account linked to yours?
Afterwards waves of seizures marched through me,
Waving ATOS flags,
Exhaustion and nightmares followed.
You call me lazy? Disabled?
I say I am abled. Disabled only by you.
Your rules, your words, your papers
You say ‘disabled’ people like me shirk work?
I say we work harder than anyone else.
If you need to rest after you take a shower,
Brush your teeth,
Smile or laugh,
Cover up your constant pain and say “I’m fine” a million times a day.
Then you will know the meaning of hard work.
I am lucky, I have family, I have food and a home.
I am loved. Millions aren’t. And it’s for them as much as me,
That Jermey, I ask you now, no, I implore you,
Stop being such a *unt and end this sham.
Sincerely and still with a hopeful heart,