Back to the sea

Today I went back to Body Psychotherapy, and fell once more into the sea . It was tough, and now, I’ve hardly written a word of my book – my ‘real’ work. My brain is numb and exhausted, my head sick and stuffed full of concrete. I feel like crying or throwing up, maybe both. Maybe nothing. Writing to unlock, to discover, to be who I am. To focus and breath. To show up on the page and exist in this moment. Here.

therapy

 

Today I acknowledged all that I have done and the way I have come. I saw it, and yet at the same time spotted that the summit is still up ahead. I saw it through the mist and fog and thought perhaps I’d reached it, but I know it’s not quite there yet. I see now there’s another rock face to climb, one more stone slab to scale, but the top’s in sight. I’m not sure how to articulate it but at least I see it now. The climb infront of me awes and terrifies me.

When I was growing up I used to surf. Well, I used to try! I wasn’t very determined, I didn’t much enjoy the cold or getting beaten over the head with my board, falling onto rocks in shallows, spun and held down by churning water. I didn’t enjoy the too-cool-for-school older kids who acted like they’d been born on a surf board; bleached-branded-teenagers who treated the waves as if they were their private property, which I was not worthy enough to enter.

enough

Despite that, what I do remember, of those rare minutes, when I caught a wave, stood, felt the ocean beneath me and looked ahead of me, is the feeling of being totally in the moment, of achievement, of pride, of simply being part of the world, in the sea and happy to be alive! A feeling of sheer joy – followed up usually with a slap of freezing-english-sea reality, as I crashed undignified off the wave, face-first demonstrating my superb sand-eating skills! That moment, that feeling of being consumed by the moment, and absorbing all of the world, is, I think, what I’m still seeking. I’m still holding something that’s stopping me getting it. Something I’ve put up walls around and buried so deep I don’t even know what it is. Something hidden deep amongst my chronic pain, epilepsy and PTSD, something that I have yet to name. Yet to eyeball. Something that still burns with fury.

I didn’t continue surfing; blaming time, location but mostly lacking in courage. But I never lost my love of the sea, and still today the beach is where I go to calm my mind when all about me seems to flame and burn. After all these romantic thoughts about ‘chasing-the-moment-maaan’ I thought perhaps I’d like to get back into surfing – well as ‘in’ it as I ever was! So this afternoon I geekily tried out a little surf-warm-up at home……… and now words fail me… what I discovered was; my arms are currently so weak I can hardly push myself up, my legs shake when I jump up (pop). And my body’s breathless and sick after just three attempts! Am I really that unfit?! Potentially. Or is this TMS whispering ‘unfit-loser,unfit-loser,unfit-loser,unfit-loser,’ into my ears? Either way, I know this much, being fit is something I crave. Getting back out in the waves, is my new target. Something realistic, achievable, that I’ve done before and can do again.

paddle quote by Nat Young

…………………………………..

Thoughts on ‘Disability’

You say; You have to take these drugs or else

I say; Or else what? I’ll hurt myself? Others too? Surely it’s my body, my choice? No?

You say; I thought you were ‘better’?

I say; Better than what?

But you don’t look sick.

and you don’t look stupid.

But you’re disabled

No I’m human.

But you’re not normal.

but neither are you.

But you can’t drive a car

I could, of course I could.

Oh yes, my sister’s-lovers-boyfriend’s-dog’s-budgie had that

…a four letter word to you!

You say; Well get better soon.

I say; There is nothing to ‘get better’. I am human, You think I’m broken and fucked up but I am great, I am perfect. I am just like you. I am how I am meant to be. I am wife, sister, daughter, friend. I am writer, cooker, painter and decorator, I have scars inside me that you can’t see. I bet you have some too. Rule-makers have labelled my scars and put them on a list. I’m not sure why, perhaps they’re scared. People are scared of what they can’t see. But you don’t need to worry my scars don’t need labels, they are just there and they help make me, me.

ability

Pin on PinterestShare on Google+Share on Facebook

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

Pin on PinterestShare on Google+Share on Facebook

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!!!

 

Pin on PinterestShare on Google+Share on Facebook

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.

Pin on PinterestShare on Google+Share on Facebook