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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Un-learning fear

Madiba deepest fearI was first introduced to this quote by one of my teachers at Bryanston School. In retrospect I think she was probably an alcoholic. I remember she smelt of alcohol at breakfast time and looked as if she had slept in her clothes. I think she was an English teacher, but I’m not sure and I’m sorry to say I can’t remember her name at all. Despite this, she is a teacher I will always remember with thanks and admiration. It is not an exaggeration to say that this quote changed my life and I may never have found it without her.

I went to Bryanston, at the age of 15 and I was there for less than a term. I remember being in awe of the school, the Arts facilities were/are jaw-dropping, I’d never seen anything like it. I was so excited when I got in, I thought it was going to be a whole new start. Well it was, sort of…in-between accepting my place and actually starting the school I was diagnosed with Epilepsy. With encouragement from my family, I decided to still go ahead and start at Bryanston. It was a much bigger challenge than I anticipated, my medication was not settled, I didn’t really know what epilepsy was and I started to have panic attacks. I was assigned to this teacher I think as a sort of ‘pastoral-mentor’. I remember thinking that she liked me, I think she did. We were sitting on these leather sofa’s in the school’s hall and she handed me this quote scruffily printed on blue paper. I read and re-read it, I couldn’t put it down. Shortly after this however, I became too ill to continue at Bryanston. Looking back it amazes me that I didn’t know that from the moment I left that school I’d been set on a course in which my epilepsy challenged every academic and professional choice I was to make.

The exact seats we sat on

The exact seats we sat on

I have since hand-written Mandela’s quote and carried it with me to every place I’ve ever lived. I stick it up with blue-tack by the front door so I am reminded of it regularly. I have learnt it by heart and try to meditate on it often. Knowing it once saved my skin, when I was asked to make an impromptu speech to an educational convention in South Africa. Reciting it got me a standing ovation, the memory of which still makes my spine tingle! I recently learnt that Mandela was in-fact quoting Marianne Williamson, I think she is equally wonderful and this knowledge does not alter the immense wisdom in those words for me at all.

I had cause to think of it a lot yesterday. It seems however hard I try not to let the health of my earthly body define me, it does and feels like it always will, to some at least. Whilst it is undeniable that my spinal injury has in some respects affected my life at the moment the most, in that I can’t move easily. Having epilepsy has not only changed the course of my life, but ultimately changes people’s opinion of me (even if they say it doesn’t I no longer believe them). I have noticed that when people learn I have a spinal injury they are usually sympathetic and say things like ‘get well soon’. But when they learn I have epilepsy there is either a) a deathly silence, which I feel the need to make light of (I fit with only the best…etc!) or b) an exclamation of ‘how interesting’? and then silence….if and when this happens in a work-related environment this is then followed by an ‘oh ummm sorry could you just fill this in you know so we can ummm err keep you safe’………… These forms are pretty horrible things to me, the people who produce them have no idea the impact they have.

This bureaucratic question which often features particularly challenges me:

‘Do you consider yourself to have a disability? Y/N’ Well my answer is N. No, but I realise that if you read the UK governments definition of disability then I fit into that box neatly, several times over. As my uni-registration wonderfully, emotionlessly read : Lucy has multiple-dissabilities. I made a joke of that, I told anyone and everyone who’d listen. I now think it’s a pretty despicable label to automatically give someone and my heart aches.

Writing this is cathartic, but challenging too. I woke up at 5am today, unable to sleep after being given one of these forms yesterday. It asked for detailed medical history, next of kin, Dr’s details, descriptions of seizures, warning signs. It appeared out of the blue. I was told I could not move forward on a course without it.  It made no mention of confidentiality or why it was needed. I have learnt, over many painful years why it is needed….I believe forms like this are not needed ‘to keep me safe’, neither are they designed to be cruel. Forms like this are made of pure fear and ignorance. They make me feel like a freak, like people are afraid of me and that I have done something terribly wrong and need to justify myself. It makes my stomach churn and my eyes weep. We have developed a culture that people are so terrified that they will be sued etc for failing to ‘keep someone safe’ that they have designed this paperwork to protect themselves. Common sense, care and kindness are all forgotten.

Part of my frustration is that handled with common sense and kindness, these procedures, if we must have them, do not need to be so traumatic for individuals like me. Out of my four or so attempts at a ‘real career’ only one employer has made me truly welcome and not made a fuss about disabilities. They did this simply by:

  1. Reading my medical form. Properly. Remembering it.
  2. Scheduling a brief informal, private meeting with me
  3. Telling me they’d read my medical chart, going through it with me BRIEFLY.
  4. Asking if there was anything they could do to help me in the workplace.
  5. Telling me they had a 24/7 open-door-policy and to come to them if anything concerned me about the way they handled anything- they want their employees to be well and happy
  6. Telling me they saw no reason why it would affect my ability to do the job as well as anyone else. Believing in me.
  7. Not bringing it up again. They read the form properly once, they don’t need to again.

Such simple things, only encountered once. If these things were done everywhere, alot of stress and even court-cases could be avoided. How can that be the way the world works? Why in the C21st does such fear of dissability persist? I might not be normal but who is?! Why does anyone need to know if I consider myself to be disabled? Who does that help? You or me?

If I am blessed enough to one day have children I hope that they will find a world where people simply see them as people and not as a labelled condition which they may or may not have.

MW on love

Lets’ unlearn fear

This has been a rather heavy blog, I feel worn out and exhausted so here are some things to lighten your day! One Love.

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Discovering New Therapies

Today I was planning to write a constructive and positive letter to The Prince’s Trust about my experience working with them, I think they are a potentially wonderful organisation and I hope my feedback will help them to adapt and support more young people better in the future. However, following communications from them this morning I simply do not have the mental energy to begin writing to them now. Nor do I want to write something that comes from anger, depression and frustration.

I miss working so very heart-wrenchingly much. Your Monday-morning-work-grump is the stuff of my dreams! I miss the children (they will be so big they wont know me if I ever get back!) and being part of a team…. I can’t imagine not working with children………….if anyone can think of any other ways I could support myself I’m open to ideas! Benefits, which I am not-yet on are looming in the background of my mind. I DO NOT WANT them, I want to be well, very much. That is all. READ MY BLOG Osborne, Theresa May and Cameron! I am one of your ‘curtain’s-closed-lazy-people’! Ommmm One Love…even to them…. if I think Ibuprofen’s bad for me then making my blood boil’s not going to be any better is it?! One Love.

I think my mind, heart and soul were meant to teach, but this body was possibly not…. I need to make peace with this potential fact. It hurts me. Goddammit-self-pitying-moment-ahoy!

Anyway I have decided to let this all go for a day or so. Instead I choose these and to write about my new alternative-therapy discovery!

choose love

I have been searching and searching for alternative’s to NSAIDs which I am being prescribed. I want to be out of pain, but not just in the short-term. I want life-long learning and life-long healing. Mainstream Doctors seem to find this incomprehensible, why I don’t know? Are they worried they might run out of work?

A friend responded to a facebook plea for a homeopath/herbalist, she told me her dad was an experienced complimentary health practitioner and that I should call him. So the next day, I did. I’d never met him, I had no idea what to expect, what even really to ask for, I have seen so many Doctors, I have so many different ailments/conditions/issues my brain finds it hard to articulate it all never-mind explaining it to someone else. But I want to keep trying new things, educating myself and hopefully this will all start to heal me. The first thing that gave me hope when I rang was that this man listened to me he let me talk, he gave me time, his name is Robert Awdry. He told me that he wouldn’t treat me with Homeopathy much in the first instance, instead he would use a combination of Electro-Acupuncture and Bowen Therapy. I had never heard of either treatment.

Following researching for this blog piece I am glad that I didn’t google ‘electro-acupuncture’ before I saw him – it brings up a host of slightly alarming looking images of people with needles and electrodes stuck all over them and even warnings saying ‘not suitable for people with epilepsy’ etc….. this was not my experience at all!

Prior to my session Mr Awdry explained to me that electro-acupuncture is a form of traditional acupuncture done with a small machine, that locates accu-pressure points and sends small shocks there to awaken and relax muscles. It does not break the skin so is very gentle and un-intrusive. Bowen Therapy is a gentle remedial massage type therapy which is used to stimulate the body to re-balance itself and promote healing, pain relief and recovery of energy. I arranged an appointment to see him at his clinic in Dorset the next day.

It was a beautiful day and the clinic was set in a very secluded part of the Dorset countryside. So finding it provided me with a nice little feeling of accomplishment and pride at my calm navigation skills! Mr Awdry, was friendly and professional, again I felt he really listened to me and took time to explain the reasons for his suggestions. He didn’t patronise, he didn’t make me feel like a time waster and he didn’t dismiss me. It was great!

The treatment itself was interesting, he put a heat lamp on my right side, did some gentle massage/Bowens on the left. The Electro-Acupuncture felt just like standard acupuncture. The machine looked like this, he demonstrated it on his hand to me first so I saw it didn’t hurt!

Electro Accupuncture

When I stood up I felt warm, relaxed and my back felt more open. I was impressed. I’ve tried a lot of therapies, it seems I’ve found another good one! I was even more impressed that the improvement persisted the next day too. It is a bit of a challenge that he’s in Dorset as I live between, London, Devon and Brighton…however I think it will be worth the trip to return!

I told my physio about it and he was very encouraging about it which was wonderful too.

I hope my blog encourages people to open their minds, try new things and believe in the power of their bodies to heal. The human body is amazing. I am healing. One Love.

 

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Working with Health

When I woke up this morning I flipped the date on my Angel Calendar (I know, I know but I love it!) it said:

“you have the power with your focused intention to create a career that is rooted in your life’s purpose”

This is something I’ve always felt, yet always struggled with. So I thought that today would be a good day to write about my experiences trying to find and maintain a job, whilst having epilepsy and other health complications.

It is a subject I have previously avoided, worried that it might be seen by potential employers or upset previous ones. However, I now think that honesty is really the best, healthiest and most positive path to take. I hope that by sharing some of my experiences I will understand the challenges in them myself better and that they might perhaps help someone else too.

It is perhaps an obvious statement to say that our health affects everything we do. Every job we apply for and everywhere we consider working. It is so obvious that people who are Well, take this totally for-granted. I know I did.

When I was 15yrs old, just before I was diagnosed with Epilepsy I decided I wanted to go to a new Sixth form College the following year. It was an amazing school in Dorset with an incredible Art Studio. It was so far away that I’d have to stay there some nights but I really wanted to go and was very happy when I got in! That same year in August I was diagnosed with Epilepsy aka Brain Farts. When September came and the school term started, I was still getting used to my meds. I was pretty ill, I was still visiting Doctors often and missed alot of school. This made making friends and settling in even harder. I became more sick, people called me Spaz……… with the help of an incredible-life-time-inspiring-I’ll-never-forget-teacher Mrs Stuart, I went back to my old school and managed to take my A-Levels. Although, school is not strictly speaking a job, this experience was the first time my health had directly impacted on a choice about my education/career path and although I didn’t see it at the time it was the start of many such incidences which surely have charted the course of my life so far.

University was by far my best Educational Experience. I never knew I could love education that much, having pretty much hated school. Despite my uni registration form reading that I had ‘Multiple Dissabilities’  ( I had never felt I was disabled)My meds where working, I was free and having fun! ALOT OF FUN. I spent those three years in a whirlwind of being blissfully happy or blissfully distraught in an exquisitely-painful-horrendous-wonderful way!  I can’t say I remember much of what I studied inside the University buildings. I was far too busy studying life outside and what I learnt rocked my world! At the end of third year Epilepsy reared its ugly head again, I missed my final exams and didn’t do a dissertation. After a long fight involving Occupational-Health-Therapists and Neurologists, The University let me re-do my third year aka my fourth year. I find I’ve blocked alot of these memories of exactly what happened. Explaining why I spent 4 years at Uni was hard, explaining makes it real and I was/still often am very happy in my unreal land Thank-you-very-much!

So Education Done. Phew! Two health challenges beaten. Little did I know the reality of what I would face in the wide world of full-time employment. All through uni I’d done part time work in Primary Schools. I’d always truly loved children and as I’d grown up, I developed a real interest in education, particularly in children’s early development. It seemed like the natural step to become a Primary School Teacher. Indeed I felt so lucky and blessed that I had a really strong feeling about what I wanted to do, I saw friends floundering in a sea of ideas and was so pleased not to be one of the confused Graduate Masses. I thought not only have I found something I want to do but I know, I really know, deep down in my toes I could be good at this, I could.

I want to make this positive blog, but there are some dark things that I want to get out first. There will be a silver lining I am sure, but first there is this ////I just wrote a detailed blog about several experiences but the computer just deleted them and I can’t retrieve them- I am taking this as a SIGN that it was too heavy and negative! So here is an abbreviated version with added silver lining and JOY!////

I didn’t complete the Teacher Training. In summary I found my way blocked by mountains of paperwork, interviews with Occupational Health workers, Tutors needing detailed medical accounts, insurance lacking and ultimately being prevented from being in a room with children. Any children. This was just ‘the process’, no one took into account how stressful this was for me or even considered the fact that I didn’t consider myself disabled, couldn’t even discuss epilepsy honestly with myself let alone the rest of the world. Failing this course took my confidence,my self-belief, my ability to see myself as able-bodied and my ideological view on what ‘Equality’ looks like in a C21st workplace.

My Silver lining came in the form of an expenses-only third sector job in South Africa with Tenteleni. It is still one of the best things I’ve ever done. They gave me responsibility, barely commented on my health, gave me confidence and built my self-belief. I made friends and met my husband. I was totally skint and happier than ever!

Tenteleni

Blissful as this was, you can’t live on Happiness (why not I wonder?! A flaw in the Creators plan I think!) I decided to look for work in the Third Sector and pretty soon landed a job, which to all intents and purposes seemed like my dream job. A real, proper job. No one could’ve been prouder or happier than me! Untill after a few months I again found my way blocked by mountains of epilepsy-related paperwork, sudden needs for detailed medical accounts, refusals to insure me to work with children or travel and consequently being excluded from work………I couldn’t believe it had happened again and in the third sector too…..I was so stressed that my Epilepsy became the worst it’s almost ever been and I couln’t go to the office. I fought to be treated equally, my Neurologist supported me, I fought not just for myself, but for future employees. I don’t know if it made any difference, I left. I couldn’t work there anymore. I am trying to choose love, trying not to be bitter about this but mostly I was desperately saddened to find this type of discriminatory behaviour in a sector I had on such a high pedastall, that I was so very proud to be part of. They broke my heart and any shred of idealism I had left.

After I left, my health drastically improved and now my Epilepsy is back under control. Since then I’ve only had very limited part time work in a Nursery. Now it is my back preventing me from working. I know I have lost alot of confidence again, I am scared of my Epilepsy coming back under the pressure of full time work, I am worried that the only thing I can do is work with Children, I’m trying to set up my own business but now my back’s got so bad – probably from spending days on the floor- that I don’t know if I’ll even be able to do that. I know that like Tenteleni, another silver lining must come. Balancing what I want to do, what I can do and what I need to do is one of my greatest challenges and will therefore be one of my best achievements when I manage it.Which I have to believe I will. Until then here are some pretty pictures and wisdom on the topic.

If you’ve found health & work challenging I’d love to hear your stories too.

 

 

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