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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Dependent

It was with a sinking stomach and shamefilled heart that I called up the Benefits people recently. For the first time in my adult life I have become entirely financially dependent on the generosity of others, of my husband and of the state. It is a grim feeling not something I cherish or have looked for. It is a day I have put off and put off. I have tried to make the meger ends of my savings meet but now my sick-leave has ended and I have not got enough work.

connect

The Government seems to make it absurdly complicated. Why can’t I just sit down face to face with one person and say I have nothing to hide. This is my situation. Can you help me? But no, there are 100s of departments, forms, telephones and burecracy to get through, only to be told you’re in the wrong department…. I dont want someone else’s taxes to pay for me. I want to pay for me. I am ashamed and angry that I dont seem able to.

I do not know what to do. Part of me says that I should not write this, it’s public, a future employer might see it. Well okay, but this blog is as much my therapy as for readers and possible employers. It is my truth and I send it out into the ether without agenda. I simply wish to let it go.

true

Previously I have rather arrogantly, felt smuggly confident that I knew What I wanted to do to earn my way, more, I knew what I could do. I had total faith in my ability to support myself. I am blessed to have been well educated and come from a stable family, I have no reason not to be independent and able to provide for myself. Over the last five years that belief has slowly been chipped away from me by repeatedly facing epilepsy-based-discrimination in a variety of different, but equally ugly forms I no longer know where to go or what to do to support myself. My experiences over the last year have complicated my job-searching further…I don’t want to use the words I can’t instead I will say It is challenging for me………

Still here

It is challenging for me to:

  • Stay in one position too long
  • Bend, Crawl and Carry things regularly
  • Start early / finish late / not get over tired
  • Miss mealtimes
  • Travel further than an hour alone

On the other-hand I CAN:

  • Write, Type, Paint, Draw, glue and stick
  • Move around freely and independently
  • Be enthusiastic
  • Talk and imagine
  • Plan

So what should I do? I have achieved much in these long months of illness. I am learning more every day, I have even managed to create this blog and therby provide myself with a little extra income. I literally did that from nothing, when I was at my lowest eb. When I couldn’t move. I used what I could and reached out, I know that is pretty damn great!

Today I’ve had a new idea for self-employment. I’m not sure how it’ll work, if it’ll work and what I could do with it but I’m going to have a go. I will support myself. I know I can do it!!!

no princess

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Saying No

It is hard sometimes to work out what I want to write down, to be clear and harder still to be positive. I find just letting my fingers type to be the easiest path to take and trust that somehow the words just unfold onto the page, telling their tale as I go.

No Writer

It is beautiful here again today, wheeling guls, sea air, colourful people and crashing waves are my soundtrack. I hope that I always feel this blessed to be here, at this moment there is nowhere else in England I would rather live. In Brighton I have come home. I can just be.

Sea

A wonderfull opportunity appeared before me today. A new job manifested from nothing but a good feeling and kind words from a friend. A job perfect for me, part time, social, outside, flexible, international, youthfull, multilingual, inclusive and travel-loving. Right up my new-street! Something I could dive straight into, make a few quid, meet new folks, find a routine, GET INVOLVED and encourgae people to EXPLORE. When I heard about it, I didn’t think I’d get it, I thought bi-lingualness was essential, not a-bit-of-several-languages. But after meeting the very sound, lovely ladies there, they OFFERED it to me! JOY.

One Day

I sat on their soft-black-sofa, my spine burning, thinking I WANT THIS. I CAN DO THIS. I WOULD BE GREAT. The role involves walking around Brighton for a full day, carrying a full rucksack….. I tried not to hobbel as I left the interview and walked out of the building, a huge grin on my face and invisible dread in my stomach. Something was holding onto my spine, stabbing my leg everytime I walked. Each step was harder. Each step, shot more pain into my pelvis, The Southover Hill loomed ahead of me…it might has well of been Everest. 50m up I stopped, leant against the wall. Sobs shook me. I breathed, I started to chant inside. My mind calmed, my pain eased. I surrendered. I made it home.

Chanting Helps

Chanting Helps

I wanted this job. But I want to be honest, with myself, with my body and with a potential employer. I would hate to accept it and then let them down by being in pain. But then I want to try. I am nothing if not a tryer! Then again perhaps sometimes the hardest choice is the right one, to say No is to explain and admit the truth. To face the benefits-path and accept it is a big challenge (hear that Osborne?!) is a full-on reality check for me, something I’ve been putting off.

I said no, I turned it down. That was hard. I know now, I’ve got to not look back. I made the decision, it’s done. One that I hope that was right for me and for them. I am happy knowing that I spoke my truth, I chose love and faced reality. I was brave.

face reality

If you have struggled with hidden disabilities and employment I’d love to hear from you and share our collective wisdom on the topic, it’s TOUGH MAN!

I am grateful to the universe for the opportunity, confident of the path I took and send light and joy to all on this sunshiney day. One Love.

passing

‘Jobs’ are not the meaning of life.

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