Dear Jeremy Hunt

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,

White-british-middle-class-southern-girl,

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?!

fit

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

Not mine.

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,

Stand

Piss,

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,

Lucy Baena

Quote from: Judith Rumelt, pen name Cassandra Clare

Quote from: Judith Rumelt, pen name Cassandra Clare

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I am not broken. I am not disabled.

Pain? What pain? I have gone three days without a twinge, without so much as a paracetamol! If you are at the start of your mind-body-pain journey then I am here to tell you, your recovery is possible just keep going! Over the last few days I have come to a conclusion, something which is a revelation, no, an EPIPHANY! It is this simple fact:

I am not broken. I am not disabled. It is, impossible for any human being ever to be broken or disabled.

Our societies, cultures and technologies are the broken and disabled parts. There is infact nothing that epilepsy has stopped me from doing. I do not drive cars not because it is impossible for me to do so but because the car with inbuilt-seizure-detection-auto-drive-head-cushion is yet to be invented. My attempts at a career have ended in discrimination law-suits not because I am disabled but because the laws humanity has in place are not designed for un-breakable people. Those laws focus on the human species fragility. This spreads fear and panic.One day perhaps laws will be in place which instead focus on our incredible capacity for endurance and peseverance, our diversity and complexity. This thought has BLOWN-MY-MIND and set me free. For the first time in a long time I see the world and think. It’s OK. I am just how I should be.

from: a trendylifestyle.com

from: a trendylifestyle.com

It seems somewhat serendipitous that this thought had happened to me just as Spring has sprung in all it’s green-new-life-ness, so with that in mind here is my little ode to spring and the joy it brings me.

Art by Paweł Jońca

Art by Paweł Jońca

The wind whips my hair across my eyes, into my mouth and up my nose,

My knees are wet from kneeling on the dew-drenched grass

I’ve rushed out here each morning, sleep-filled-head,

Lungs drunk on salt air, to peer over the raised bed,

Like a child on Christmas morning,

I reach out and gingerly scrape the soil, warm and moist.

Trying to guess how far down you are?

Are you waking-up-shaking-up?

Or is it still siesta time?

Where are you?

I trace the soil across my palm, a seagull wheels overhead

The Elder Mother creaks in the wind, her arms bruised green,

Branches heavy with life, I ask for a share in her bounty.

I squeeze my naked toes into the soil and whisper a song for you

I tighten the string, I’ve marked out around you, to keep you safe and known.

The elder tree’s unfolding now, a steady green volcano erupting down the garden

Unstoppable and unrushable.

Another moon has swelled and shrunk before I creep out again,

Hoping and wishing

My feet leave flattened prairies in our too-long grass

And I can’t quite bear to look………….

Then finally I see you.

A tall green shoot, pushing skyward, hungry for the sun, yellow edges unfurling, spraying out
HELLO WORLD you shout at me!

Hello! I think back!

Art by Keith Perelli

Art by Keith Perelli

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A professional epileptic

I got a message on my Linkdin profile, it read: ‘God Lucy your linkdin profile is SUPER!!!!’ (I barely use linkdin)

It made me smile, it made me laugh, it nearly made me cry.

You see, on paper I guess I do look pretty good.

I finished school and university, I got some grades and I’ve had some jobs. Infact alot of jobs.

I’ve worked abroad and in the UK too. I’ve worked for them and for them, I’ve even worked for me.

I’ve turned nothing into something and been part of some big things. I’ve made cash enough to live on, or there abouts.

 

credit: famousquotes.com

credit: famousquotes.com

But now, you see, when I look at my ‘professional’ life, I don’t see good, I don’t see achievement.

I see the space between the words. I see a CV full of holes.

Holes full of lies and fine fine fine. Holes that hold truths that I can’t ever say. Gagged and bound I stare into the abyss.

Holes full of occupational health, law-suits, discrimination, incapacity benefits, employment and support allowance, Doctors notes, exhaustion, pain, panic and fear- mine and theirs.

I see an application form line; Do you consider yourself to have a disability? No I don’t consider myself disabled. I am ABLED! but your definition says I do and lies are a crime so Yes then, YES I DO and FUCK YOU!

I see that I want-it-all. I want to be like you. I want the there’s-no-reason-I-can’t-do-this-job but I also want allowance-acceptance-understanding-that-I-have-epilepsy. I know having-it-all does not exist. I know I just want to be well.

I see crushed idealism and a broken heart.

I see that all new paths lead to the same dead-end-door; E.P.I.L.E.P.S.Y.

I don’t see the point.

……………………………………………………..

Today I am so very tired. I’ve hardly slept for the past few nights. This going round and round my head. I just want to numb it out. I don’t want to face this. I’m trying to find a way to end this positively. To see the good, to see the truth in my CV and I suppose it is this;

That what is also in the space between the words on my CV, is just how big my heart is. How much I truly care, how loyal I am and how hard I work.The words in the holes say I have had to fight my way from one line of my CV to the next and I’ve done so with courage, determination and dedication. My team-work and problem-solving skills are WAY up there with starred firsts and A*s. They have had to be.

And right down there is the depths of my CV holes is this: that despite it all, I’ve kept on going. I haven’t given up. I’ve pulled my bruised and battered self on and up to the next line of my CV and that is what truly makes it SUPER!!!

 

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I have hope. It is possible.

Today is a conflicting and challenging day for me. I want to write about it but not only am I struggling to find a positive way to portray it but I am legally restricted in what I can say.

Right now in London there is a huge youth-empowerment event taking place, drawing celebrities from far and wide to come and encourage a new generation to change the world for the better. I was part of the initial team that began working on this about five years ago. I followed the event online with a mixture of admiration, hope and incredible sadness too.

“Nature loves courage. You make the commitment and nature will respond to that commitment by removing impossible obstacles. Dream the impossible dream and the world will not grind you under, it will lift you up. This is the trick. This is what all these teachers and philosophers who really counted, who really touched the alchemical gold, this is what they understood. This is the shamanic dance in the waterfall. This is how magic is done. By hurling yourself into the abyss and discovering its a feather bed.”  ― Terence McKenna

“Nature loves courage. You make the commitment and nature will respond to that commitment by removing impossible obstacles. Dream the impossible dream and the world will not grind you under, it will lift you up. This is the trick. This is what all these teachers and philosophers who really counted, who really touched the alchemical gold, this is what they understood. This is the shamanic dance in the waterfall. This is how magic is done. By hurling yourself into the abyss and discovering its a feather bed.”
― Terence McKenna

Amongst the collection of inspirational participants were several disabled people. A young man with no legs, a blind girl and a paralympian with prosthetic limbs. They have all achieved incredible things. They were all told things were impossible for them and they all did it anyway. They have climbed mountains, survived bombs and appalling bullying. This is fantastic. They are truly inspirational people. They are all obviously, visibly (dis)abled. It is brilliant that they are being used by the organisation to inspire young people…….. but when I watched them speak and listened to their words my heart filled up and my eyes cracked and tears streamed down my face, not because I was so moved by their words, but because they do not know  the reason that I was not there in person today.

I’ve done the maths. There where over 12,000 young people there. In the UK, One in every 103 people has epilepsy, which means that those motivational speakers where speaking to AT LEAST 116 young people with epilepsy. They were invisible to those around them, but they were there I promise you. The reason I was not there was not because I didn’t want to be, the reason I wasn’t there is simply because I am one of the invisible ones. Along with those 116 kids, I too am epileptic. I have learnt that sometimes, in an organisation whether it’s for profit or not, it is easier for the invisible people to simply stay invisible. This is my story with this organisation;

Finding a way to have a career, a profession is a particularly massive challenge for anyone with an invisible condition/disABILITY. Once found, it is even harder to maintain. In my experience so far, it has not been possible. But I don’t think that means it is impossible.

At first it seemed I had landed my dream job. Joining an international youth empowerment organisation to open their first UK office. I was their first UK employee. I couldn’t believe it.. I had a job I was not only excited about, that I could support myself from, but that I truly believed in! For possibly the first time in my life I was proud of myself.

All this talk of saving souls. Souls weren't made to save, like Sunday clothes that give out at the seams They're made for wear; they come with lifetime guarantees. Don't save your soul. Pour it out like rain on cracked, parched earth. Give your soul away, or pass it like a candle flame. Sing it out, or laugh it up the wind. Souls were made for hearing breaking hearts, for puzzling dreams, remembering August flowers, forgetting hurts. These men who talk of saving souls! They have the look of bullies who blow out candles before you sing happy birthday, and want the world to be in alphabetical order. I will spend my soul, playing it out like sticky string so I can catch every last thing I touch. -Lynn Underwood

All this talk of saving souls.
Souls weren’t made to save,
like Sunday clothes that give out at the seams
They’re made for wear; they come with lifetime guarantees.
Don’t save your soul.
Pour it out like rain on cracked, parched earth.
Give your soul away, or pass it like a candle flame.
Sing it out, or laugh it up the wind.
Souls were made for hearing breaking hearts,
for puzzling dreams, remembering August flowers,
forgetting hurts.
These men who talk of saving souls!
They have the look of bullies
who blow out candles before you sing happy birthday,
and want the world to be in alphabetical order.
I will spend my soul,
playing it out like sticky string
so I can catch every last thing I touch.
-Lynn Underwood

I loved it. It was hard work, with long hours and lots of challenges but I particularly loved being part of a team. Feeling that I was at last able to say we’re-in-this-together it was rewarding and for the first year I could hardly fault it. It was almost too good. Then Epilepsy reared it’s head, somehow the organisation ‘found out’. I was suddenly un-insurable, I was too needy I wasn’t as flexible as others, I needed too much rest. Over several months, my position became intolerable. Not because of intentional malice but because of bureaucratic red-tape and fear at senior levels. A fear born of ignorance and naivety, of not-knowing-how-to-treat-the-visibly-OK-but-still-disabled-employee, a fear of not-wanting-to-break-the-law, an obsession with rules and the loss of any simple acts of kindness. The-greater-good was more important than my well-being. Needless to say, it ended with solicitors, legal advisor’s and lawyers. I was left to coax my shattered self back out into the world. That is when TMS took hold and where I now am.

People who know this story have asked me if I’m not angry with them? and I am . Of course I am. More than that I am saddened that this happened to me. That I left something I was so passionate about because I have an invisible condition. Saddened that the truth is I left thinking; If I had no legs you’d be loving me……… However, I am not angry with individuals within the organisation. The opposite, I have friends there and I admire their work immensely. I am proud to know these positive-thinkers, world-movers-and-shakers, they rock! I am angry with the policy-makers, law-writers and education providers. If only a few very simple steps had been followed when I first got the job there is every chance this blog would not exist. If only there was more epilepsy awareness stories like mine would be unheard of.

My greatest hope for this day is that some of the young people who took part today will go on to be heads of productive, positive organisations and when they come to employee people they will do so kindly, with care and compassion for all able bodied, visibly or invisibly disabled. They will throw away the red tape, they will say YES, IT IS POSSIBLE. WELCOME and that will be the norm. This blog will be outdated and ancient and people will find it horrifying that anyone with an invisible condition could ever have wished for a visible one so that they would get better treatment. I have hope. It is possible and no one will ever again be treated how I was. I have hope.

The World needs people... Who cannot be bought; Whose word is their bond; Who put character above wealth; Who possess opinions and a will; Who are larger than their vocations; Who do not hesitate to take chances; Who do not loose their individuality in a crowd; Who will be as honest in small things as in great things; Who will make no compromise with wrong; Whose ambitions are not confined to their own selfish desires; Who do not believe that shrewdness, cunning and hardheadedness are the best qualities for winning success; Who are not ashamed or afraid to stand for the truth when it is unpopular; Who can say "no" with emphasis, although the rest of the world says "yes". Ted w. Engstrom, from Motivation to last a lifetime.

The World needs people…
Who cannot be bought;
Whose word is their bond;
Who put character above wealth;
Who possess opinions and a will;
Who are larger than their vocations;
Who do not hesitate to take chances;
Who do not loose their individuality in a crowd;
Who will be as honest in small things as in great things;
Who will make no compromise with wrong;
Whose ambitions are not confined to their own selfish desires;
Who do not believe that shrewdness, cunning and hardheadedness are the best qualities for winning success;
Who are not ashamed or afraid to stand for the truth when it is unpopular;
Who can say “no” with emphasis, although the rest of the world says “yes”.
Ted w. Engstrom, from Motivation to last a lifetime.

 

 

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