It is a languid, cold, rainy, slow Sunday afternoon in March 2019 and I am tucked under the cosy blanket on the sofa at home idly flicking through the travel pages of a magazine when I see an image so powerful and evocative to me that I burst into tears.
It is an image that squeezes my heart with such an emotional punch of simultaneous joy and sadness and other complicated feelings that I am transported back to 1987. The image is the iconic coastline of the stunning jurassic coast, specifically, the winding coastal path that makes me rediscover my inner child as I let my mind wander to past trips to stunning Durdle Door, conjuring up that feeling of warm sand between my toes, a tummy full of ice cream and a heart full of love. This is a precious time that can never ever happen again, but can be returned to within the corners of my mind, filed under the name of Uncle Freddie.
I happily recall endless summer days wandering barefoot across the beach, searching for fossils and only the most beautiful shells for my treasured collections and staring out to sea while imaging escaping to sea on childhood adventures akin to the stories filling my head from the many books I loved to read, at the time, think famous 5, Swallows and Amazons and my much loved The Lion, The Witch and the Wardrobe. Narnia surely was behind the soft sea mist and just around the coast, just beyond my permitted radius?
Yet, while it is wonderful to remember those blissful, near perfect sunshine days on the beach, it is not that which makes tears come to my eyes, it is the memory of my wonderful and much loved and idolised Uncle Freddie.
Losing my Father at 2 years of age meant that my Mums lovely older brother took on the male role model for me that informed my early years. He was my absolute hero! I was wary around men, and this man was my safe haven. He was always around and he and my lovely Aunty took me on holiday most summers. Some of my happiest memories are on the beach, with my pens and paper, books, and of course a bucket and spade. They let me explore and I remember the joy of climbing on the rocks and searching for fossils.
This love gave me freedom, and it nurtured my love of nature and our beautiful British Coastline, but what I remember strongly is the utter joy and anticipation of walking that winding path down to the beach, it was truly stunning to see Durdle door and the panorama ahead, of blue, blue ocean and a day of sea air and magical adventures.
It is a view that took my breathe away, but what made me cry when I saw the photograph is the fact that it triggered a memory of Uncle Freddie gently holding my little hand as we walked that steep but much loved path because he is now passed away and I have no photos of those treasured days spent at the beach.
Perhaps this is why I feel so compelled to capture moments, everyday moments, holidays, adventures, my sons childhood. Will the photo above of Aberdovey where we take our boy most summers evoke strong emotions when he is older?
I hope so. It will be meaningful to me, always. These photos show the stories of our lives. It is our history. We can never go back, can we?
I wish I did have a handful of snaps from my childhood holidays, those sunshiny moments captured forever but there is not any, sadly, but thank goodness I can remember how it felt, I can feel all that love and sense of adventure.
I know one day I shall return to Durdle Door and gaze across the sparkling water and I know I shall walk that lost path and be captivated by that view once more, and Uncle Freddie will be just beyond the sea mist, just beyond the horizon.
Today is Red Lippy Day raising awareness of Dementia and encouraging people to talk about dementia.
You can make a donation to help suppport the ongoing much needed research and funds for the wonderful dementia Nurses and support staff who care for people suffering with dementia, and help offer support to their families.
Dementia is a people stealer, it slowly erases the wonderful human you once knew. They become a reed blowing in the wind, gently swaying this way and that, uprooted and often isolated from reality and normality.
It’s a painful slow process and one I feel must be acknowledged but that must not be the final detail that’s remembered of your loved ones life.
Dementia can be extremely distressing. for a family to witness their loved one diminishing and shrinking into themselves and yet trying to reach out to them can be bitter sweet and at times very emotionally painful.
Of course, I am speaking from direct experience, and I am passionate that I will not reduce my Nans life down to one word of DEMENTIA! My dear “June Emily Eastwood “ was much much more than this condition and really was only defined by it in her final years of life.
Her memory deserves more than this condition, and I shall honour it.
I often think with sadness of the bewilderment in her eyes as she became more and more incoherent and confused but then I will always counter this memory with a good one.
I can still see the twinkle in her eyes when she was well and happily singing “ Daisy, Daisy, give me your answer do” I can still recall the determination in her face when she told me about how she gave one of her kidneys to her son who was in renal failure.
I can still vividly remember the smart lady whom always wore beautiful scarves and lashings of eye liner and lipstick. I can smell the pan stick if I close my eyes and think hard. This women showed me that you could unapologetically be yourself and walk proud.
Dementia took away her ability to eat and feed her self properly but I will not stay long with that thought because I am remembering how she made the very best stews, and Yorkshire puddings and how this is the women who gave me my love of baking. Together we would bake fairy cakes in her little gallery kitchen. The enticing smell drawing my Grandad into the room to be scolded for snafling warm just baked delights.
This is the women whom let me run wild in her beautiful garden and pick plums straight from the tree, and tomatoes fresh from the green house. I had free reign and loved to disappear to the top of the garden and climb the trees.
She would call me back with huge glasses of juice and tiny squares of ham sandwiches, and we would sit on the bench my Grandad had made in the sunshine.
I will often make food that makes me think fondly of my childhood spent at my Nan and Grandads and my favourite meal to evoke happy memories of time spent there is smoked haddock, simply poached and served with fresh crusty buttered bread, and a pot of tea.
This would be prepared by my Nan and presented to my Grandad whom would be in his arm chair watching the cricket or football on a Saturday afternoon. It was a simple life really and my Nan was a proud Housewife. She also worked for years at Lucas’s in Birmingham and was a union Member and Representative. She was once in the local news paper and was called a “ Battling Gran” as she was trying to support workers rights. I must get my out spokeness from Nan. She was born and bread in Sheffield and spoke her mind always. She was very direct and so am I, we both don’t suffer fools gladly.
Nans home was cosy, homely and fastidiously clean. Her garden is the one I still dream about and try to emulate. Food was how she showed her love.
When she was poorly in hospital I made sure I was there to feed her and I tried to support my Mum and Uncle. Her hand felt small in mine.
It was hard to see her like that and I try to remember her as she was before, that way is less painful and how I think she would like to be remembered. She would approve of the red lippy campaign.
I shall not dwell on the tiny diminished husk she became because that was not really her, and it was a very small part of a big and full life.
What memories do you hold dear about those special people no longer with us? Hold onto them with a glad heart, and smile.
Welcome to Page 1 of 365, a brand new day, a new dawn on 2018, the page is blank and dear human “The possibilities are endless!” Let’s shimmy in Moloko suggesting that “The time is now!” So, now is not the time to put off what you can do today, for tomorrow, oh no you must Seize the moment, but maybe later, after a latte?
Actually, how about we all just slow down a little and nurture the lost art of doing nothing?
I am thinking more snooze the day than seize the day, A Carpe Diem PAUSE?! A slow the moment instead? Whose in?
I remember this quiet “non”activity from before the age of mindless scrolling on our devices, & losing half an hour or more of our precious lives on Amazon/ Argos/ Facebook / Tinder looking at …..( insert appropriate/ inappropriate object/ person/ crush/desire ….)
I once lost 40 minutes looking at different types of kitchen swing bins, what!? True story… and it’s ridiculous.
( I only spent 10 mins in Wilko buying the actual thing! )
what has happened to the lost art of just doing NOTHING?…no phone in hand .. no immediate task to do … …no evil email envelope icon flashing at you, daring you to respond in under 10minutes then inundated with more … maybe say we just day dream, sit quiet just thinking, watching rain drops fall, clouds float by, stroking the dog, cat, partner?!, watching the actual bloody weather from a window and not just an app?! Maybe we just be?
I recall Journeys where staring out of the train window and watching the trees and headgerows whizz past was ok, being ever so slightly bored was ok, silence was ok, hands still, and my favourite pastime was to casually inappropriately stare at other interesting humans on train platform as they bimbled about their day. Maybe eyes catch a glance and make a reciprocal smile or dare I suggest we share the odd words, conversations and unrehearsed unedited chatter with our fellow humans?
Now it’s just eyes down, screen time from start to finish. Have you noticed how quiet the morning train is these days?
It seems people only engage with their hand held device?
We are Scrolling, scrolling, scrolling our life away, I’m very guilty of it.
It’s got to stop! I’m Alting the Apple, I am stepping away from the blue light!
I’ve decided 2018 is the year of the digital diet, a curfew on virtual reality, and so the Facebook app has been removed for 1 month ( Now!) and instead I’m going to read more books, blogs, magazines , take more photos using my camera, hug more trees, and stare with curious eyes at everything!
I’m actually going to call my friends and amaze them with my verbal communication skills! Yes, chat rather than send a text or Facebook messages, but not for too long as it’s not my thing at all ,weirdly, I don’t like talking on the phone and I’m a total chatter box face to face! But further more I’m going to write more. Infact I just did!…….See, the possibilities really are endless!
Today is a blue sky day, the blossom and daffodils are blooming incandescent with the sunshine. Our days are staying lighter for longer, spring is finally here and we have survived the dark colourless days of winter.
I, just like the beautiful optimistic buds of spring feel as if I am finally waking up from my dark winter stupor and cognitive hibernation and I am at last finally feeling and seeing life as it really is, in glorious & wonderful tecni colour.
My life has been temporarily muted and diminished by the very tablets that were supposed to help keep me up right and control my epilepsy. This is a unfortunate side effect of the medication I was on and one which unfortunately I wasn’t aware of until I slid into the black fug of severe anxiety which literally hifhjacked my optimism and resilience and replaced it with fear and loathing ( not in Las Vegas!) in Suburbia!
It felt as if my personality was being eroded and that I was desperately trying to hold onto the remnants of that cheerful,smiley happy, unemcumbered person that I had been before the epilespy came along.
It is a peculiar trait of humanity that we can manage to believe even the most ridiculous thoughts and untruths. The brain is both awesome in its functionality to create so many thoughts that the essence of neuroplasticity is what we practice is actually what we cultivate. Therefore trying to cultivate self compassion isn’t always straight forward when you are unwell, it seems though our thoughts are transitory we can get stuck in berating emotions over and over again.
My internal voice of discontent out rightly and repeatedly told me that I did not deserve my family, friends, job and the lovely life that I have because now I have my epilepsy I am a totally unreliable, weak, dysfunctional “try hard” who wasn’t managing to keep all those plates juggling. ( This isn’t true!) ( wow, side note: that is progress! )
My rational internal voice quietly squeaked this was not true, that I am worthy, and a good, kind person and I do deserve to be happy but against the roaring velocity of the negative narrative of discontentment it just couldn’t compete, despite it trying, and that , with the after effects of numerous seizures ( side order of physical and mental exhaustion) I just couldn’t speak kindly to myself at all. I just couldn’t be compassionate to myself.
Isn’t it true that all your shortcomings and insecurities like to stand around your bed side in the dead of night and clutter your brain up with such terrible notions?compunded by much time on my hands while resting / recovering from illness, this can again lead to overthinking and inner criticism.
Suddenly and without Much warning the keppra didn’t work as effectively as it had done before and I began to have several seizures without a warning ( ouch!) ( my warning is usually visual disturbances,agitation, Loss of speech then I just lose conciousness and start to have a seizure) this unfortunately made me feel like a walking, talking massive liability!
I lost confidence in my ability to do anything well, ( pause that life!) and this included all my passions ( photography, writing, book club, work) and worse still I questioned my ability to parent. Now, my son is my universe. In this crazy life I have always, without doubt, wanted to be a mother. Every atom of my being loves being a Mum! This was probably my only one true aspiration, more so than a wife or high flying career woman, but my life seemed to follow the general particular narrative of girl meets boy, adventure, travel, wedding and much wished for and cherished child ( after some heart ache inbetween). Sounds good until the epilepsy drugs ( anti seizure meds) tried to erode it all away in a scarily short space of time. It tried but failed, but a work in progress is what I am, and I’m mostly still standing, and working it out as I go.
I questioned over and over what exactly the point of me was. And that is exactly the moment that I realised I needed some help.
I’m not talking some great philosophical debate or some itsy bitsy minor existential crisis about what ” foot print” I leave on society, or legacy I leave my kids ( so far it’s a great recipe for toad in the hole and be nice to everyone and everything ( even that hairy spider you feel scared of!) oh no, I wasn’t pondering my place in the universe and looking to question who I was. I was questioning why I deserved to be here on this beautiful planet in the first place when I was quite literally being a burden to everyone I loved. What is the point? ( best time to be consumed with that is night time when all you want to do is sleep but you can’t) ( Damn, damn you anxiety, for daring to scrambled my thoughts and mash up my self worth. Huge Tip: anxiety is a lying, ugly, mean monster.)
That is some emotional tirade of mental abuse and it beats you up, over and over again, if you let it. There are not enough positive vibe memes that are going to drag you out of that kind of awful pit of morose thinking, you have to really listen out for your true inner voice that says ” You are LOVED!” …. “forwards, forwards, forward, with courage !”
Questioning your own existence while quietly wishing that perhaps the blank abyss of darkness is where you belong is probably the closest you can be to standing on a ledge and deciding to step back or step off…….
When step off feels like the best choice then you know it is time to seek urgent help. Yet, I didn’t, for several months. I wanted to shake myself out of it but I couldn’t as the tablets also managed to make rational thinking really quite difficult…. everyday. Everything was difficult.
I struggled to think straight and felt sedated and incoherent for several hideous, horrible dark winter months. ( I don’t remember Christmas)
I pretended that I felt ok and that I was dealing with everything until one evening I heard myself whisper something so awful to myself that I knew I had to blurt it out to my husband and ask for help. I scared myself into submission. So I spoke up, and now I’ve written this.( no hiding from here… I wear my heart on my sleeve. )
My husband gave me the biggest hug and told me that he believed everything would be ok and a week later as we sat at the neurologist appointment & we held hands and told the doctor how the tablets had made me feel. ” High level Anxiety and intrusive thoughts”( INTRUSIVE, hell yeah) and we were told this was a classic side effect of keppra and that I could change my meds. As simple as that! That’s all it took changing my meds! ( and extra rest. )
It has now been a month on my new meds and I feel ALIVE/ AWAKE and in control of my emotions and thoughts. ( mostly!)
I can think straight and it has been commented on that I seem less confused and back to my old self. ( slowly, slowly …)
A chronic fluctuating illness is bound to cause anxiety and worry but please don’t let it fester like I did. I buried my emotions and ignored them which in turn made it all the more worse. Why? I know why, ( it sucks) I did this because I thought people would be bored of me always banging on about how epilesy had changed my life or that I wanted attention and I truly felt that people were in much worse situations (Again more notes to self: – comparison is a bitch, shut her down!) that I struggled on.
I also ignorantly didn’t stop to consider that this could be a real manufactured by product of the tablets that control my epilepsy.
Now I always read the leaflets with the meds. I now have peace of mind that should those over whelming feelings rise again then I can switch pharmaceuticals, which is priceless and a gift because it means I am ( somewhat) back in control.
My anxiety is slowly ebbing away and I’m more and more my happy optimistic self but I am now more open to saying if I feel like I am struggling rather than pretending everything is ok. If you are not ok say it! Say it over and over because those who love and care about you will listen to you and strive to help you, but first you must believe that you deserve that help because you do. Every damn time. Always.
💙 Spring is here, feel renewed. Your super power is YOU.
Ramblings from a post seizure, concussed and vaguely delirious woman. I have been asleep for most of today, but I’ve been haunted by the childlike figure of the man I saw yesterday. He has played on my mind and so I have to write a few words and make the agitation and sadness more tolerable. I have concussion and a headache so please forgive any grammatical errors or my over use of exclamation marks … bear with me, have heart!
Is it possible to feel any more melancholy than in the month of January?
Yesterday I spent over 8 hours in Hospital in Accident and Emergency with a very noisey goat!
For the most part I was either confused, asleep or wide awake and desperate to be confused , removed or fast asleep because the reality was much much worse. ( please note: The goat was purely of my own imagination/ confusion and turns out to have been another poor misplaced soul, called Vera, with a terrifically bad cough….pneumonia /given intravenous antibiotics – moved to ambulatory care. No visitors …)
I spent most of the day on a trolley in the waiting area of the Main Nurses hub, because all the cubicles were full to capacity. There at a the pc station were a Dr and Matron, sat calmly ( calm in the face of chaos! Amazing job! ) for the most part doing what sounded like code breaking or quantum physics on speed. It was like a game of musical bingo beds. Patient 21 moved to bay 7, bay 8 occupied with patient 4, 3 moved to resus, 18 to 4, so on, so on….over and over and interspersed with results to interpret and attending to the high volume of patients, frenectically coming and going, over and over. The logistics of illness is fast paced and they were absolute professionals and have my up most respect for being so efficient and caring as what felt like a “shit storm” continually lashed around them.
It was very busy ALL of the time. There was no quiet time. There was no peace, it felt and sounded like bedlam, or the zombie apocalypse as lost elderly patients wondered round staring blankly at walls and quietly the nurse would reassure them and take then back to their allocated spot. Poor vacant faces, such confusion.
maybe I randomly slept through the quiet time for the half hour I was in a cubicle with the lights down but the rest of the day was spent under the stark bright Hospital lights, which are not good for a patient who has just had a seizure and head injury.
Every ring of the phone next to my trolley felt like noise torture and I would jolt but there was absolutely no where to move me to, the Only peace for me was when I had my brain scan which meant going into the tunnel and lying very still. I actually wanted to stay in there! Oh the silence ….
Anyone post Seizure Just wants to sleep, to recover, to be calm. This was impossible and yet I am totally in awe of the staff whom work at the Hospital and the dedication and care they offer, often in the face of extreme pressure and with very demanding patients and complicated tasks to complete.
I didn’t want to be taking up space at Hospital but because I had hit my head on the door frame during my seizure and then again on the floor as I landed ( fell) I had to be checked out. ( nothing serious just concussion and to rest / recover from the Seizure)
so what made me feel so melancholic whilst watching the wonderful care administered by the staff and carers of the patients?
Displacement …and not just of the elderly patrons at the hospital but as a wider platform in society, how even now in January 2017 Donald Trump is trying to displace and dehumanise and ostracise people. In general it feels like things have taken a turn for the worse. ( or is it just my jumbled emotions post seizure?) ( I aspire to be an optimist. I am an optimist! Look for the helpers. Be a helper ….) but these turns of events are worrisome.
There were so many elderly people whom were suffering from dementia and had had falls, or urinary tract infections, that at 39 I was probably the youngest person in there.
This was Just a normal cold mid winters January Monday but the A&E was fit to burst with dear poorly elderly vulnerable geriatrics. Most of them were alone or had paid carers get up and leave because their paid time was up.
It felt so sad and I desperately wanted to leave but I desperately wanted to help, I tried. I really tried.
One frail old man, alone and clutching onto the trolley for dear life was wheezing his last breaths, I’m sure of it. He had his oxygen mask on and looked and sounded very poorly.
I wanted to stroke his hand and tell him it was all ok and ” Please don’t worry you’re not alone ” but after a seizure I’m very wobbly and unsteady on my feet so I couldn’t leave my bed. I also don’t make any sense at all as my brain is scrambled and exhausted. My vocabulary is diminished and the tiredness so overwhelming. I can still see his fragile hand in my minds eye, clutching onto the rail)
I feel bad that I take up the hospitals time when poor old people are dying alone.
I felt displaced too as my role should have been with my son, at home, not immobile and pathetic, however from my trolley bed I was able to get help for the man as I felt his breathing was deteriorating and they took him around to resus, they understood my jumbled speech, “him, him, old chap, help him, please !” they listened to me.
Maybe he didn’t die, maybe he got better. Maybe my perspective was all wrong. Maybe I wanted to focus on him so I didn’t have to think about me. I like to do that.
Anyway, I kept smiling at him as my bed was adjacent to his, but he had a fixed glassy stare, up at the harsh lights above him. I hope he could see Angels.
I was so glad to leave Hospital , and so glad that I can recover but each seizure makes me feel all the more vulnerable yet all the more blessed as well , for the love and joy I have in my precious, fragile beautiful life.
I often worry about how unpredictable epilepsy is but then I realise that life is one big unknown, life is unpredictable.
2016 bought with it a fierce determination to ” Get back to normal” but after 8 admissions to hospital and many dramatic floor somersaults on my part, I was finally told I have Temporal Lobe Epilepsy. Weirdly this wasn’t what I was expecting. ( I was hoping it could be attributed to my anaemia or irregular heart ❤️ but no, and secretly I knew what was going on as I could feel it, but I like to doubt my senses all to much ( something I’m constantly working on!)
This was not noted on my wish list and things to do before I’m 40 and was most definitely a little bit of an emotional and physical blip. Blip! More like an emotional avalanche where normal life has not resumed, but I’m glad that a new ( different and slower) life has continued to blossom.
I am happy to accept that I have to manage this condition and have finally accepted that sometimes I am at the humble mercy of my beautiful peculiar brain.
This has profoundly affected my sense of identity and I have grappled with this sense of loss & knowing my epilepsy was, and is a part of me and coming to terms that epilepsy is an unwelcome guest. but it is one I will be polite and courteous to, however it took a inconsequential incident to realise what really irks me about my epilepsy…… control …..
2016 : It’s the week before Christmas, I am with my son (5) and we have been to see the Christmas Tree Festival at the Cathedral. We have written prayers for “world peace” ( My son) and ” More Empathy and Kindness” ( Me) and hung them on the prayer tree.
We felt blessed and cheerful, brave and hopeful, festive.
We feel merry and light and cheered by the many pretty lights. It’s a good day. There have been no auras and no thoughts of illness. All is well.
We are watching buses at the terminus and my son is filming the buses arrive and depart. A tedious mundane daily task of people getting from a to b, journeys home, journeys to the shops, onwards and forwards we go. It makes my boy happy, transport and trains, & so we idly bimble and waste half hour or so just watching the busy December day unfold.
And then she falls, the elderly lady with the yellow coat and white hair.
She stumbles as she gets onto the bus, and with a loud bump she falls to the floor, bags falling, arms flailing and then so much blood.
I watch as people whom I think are coming to her aid, step over her, get on the bus and obstinately look the other way, and I feel my heart pound. So we march forwards, we get on the bus. We care!
I help the lady, I elevate her leg, the bleeding ( from a varicose vein ) is pooling in a big red mass on the bus floor. I soothe, I question, I assess, I am efficient. I am calm and clear as I ask for more tissues to stop the bleeding. I check for other injuries. When I am satisfied her wound is superficial and she is ok, I get off the bus and we walk toward the train station.
I am wiping off the strangers blood from my hands with a tissue and chatting to my son whom is curious with many questions about what has just happened.
He says to me ” Mummy , you saved the day, but why are you ALWAYS in charge?” And I said
” well that’s just what I do, I help!” & automatically It occurs to me like some giant biblical epiphany that I just want to be the one who helps. ( the obvious is often oblivious to me!)
I’m keen ( Keen is my middle name!) ( infact, it’s borderline hysteria, I hear my own voice telling me to be good, constantly, as it’s intrinsically linked to my self esteem, another issue?!) to show people that I want to help, to help them.
I don’t know how not to be any different and that is why I struggle with epilepsy because I like to be the one in charge, the one helping and not the one who needs help and assistance.
I’m learning to accept help and slow down. I’m helping myself. ( cringe!) ( but it’s a stage ahead of before which was DENIAl) It’s a hard lesson to admit vulnerability and feel that you are not always in control. ( free-falling!) but I figure control is a fabricated illusion anyway so let’s just step into the unknown hand in hand…
we walked on….. chattering
my boy, as he held my hand, tenderly whispered to me ” I want to be like you, Mummy, a helper” and gave me a hug and I didn’t feel vulnerable, I felt Invincible!
I swooned and smiled till my face hurt , despite epilesy, life is good, and I live it hopeful and optimistic.
Dance Woe; A Short response to Robbie Williams naive comments regarding dancing and having a seizure.
I can’t dance! I’m ridiculously bad at most forms of dancing, I can maybe shimmy about self consciously to my favourite song and at best can jump to right ( or is it left? ) for the Time Warp, but no, dancing is not my forte, unless of course we consider the fast paced routine of the Seizure solo? Oh yes, I’m pretty fantastic at that! ( Though many thanks to my anti seizure meds my routines are a little less elaborate and infrequent, now! )
I can’t really explain my routine to you because when I am doing the “Seizure solo ” I am all on my own, and I am extremely frightened and my husband and little boy or the helpful stranger in the street are certainly not enjoying my ” dance” they are all very concerned , worried and bewildered and actually that isn’t very funny at all. My grande finale usually involves a very ungracious fall to the floor, followed by feeling very unwell, often unable to verbalise concise or coherent thoughts and then utter exhaustion. It is not jiving gone wrong or an embarrassing old ma, it’s being poorly and then picking yourself back up off the floor with much help and support from family, friends, Doctors, Nurses, neurologist and Epilepsy support groups.
It isn’t vaguely a show stopper you would like to emulate so I am curious as to why is it so amusing for Entertainer, Robbie Williams to compare his Mother in Laws dancing to that of someone having a seizure?
Where is joke?
Am I being overly sensitive?
Is Jive Jerking such a thing?
No. NEVER. Is it funny? Not one iota!
Unfortunately this is just a Ill conceived throwaway comment said without thinking ( I hope!) from a internationally well known Super star, to a very large audience. This instantly perpetuates and makes light of a condition he and many others do not fully understand, and whom don’t truly consider how difficult it can be to manage epilepsy and the effects on yours or a loved ones life.
It doesn’t make me laugh, it makes me feel sad and disappointed that Robbie Williams could be so flippant and blasé about a serious neurological condition.
So, it’s Slow clap for Robbie Williams from me for casually saying on TV that he wasn’t sure if his mother in law was dancing or having a seizure. I know the difference.
Let me categorically tell you having a seizure is not like crazy dancing and while I’m sure Robbie Williams didn’t say this without malice it was still a flippant and ignorant comment that truly belittles Epilepsy sufferers and the understanding of the condition.
“Let me educate you! ” having a seizure is not comparable to some mediocre dancing by a relative, worthy of a cheap laugh on day time TV, but you would think that was rather obvious,surely?
if epilepsy is like dancing then “Let me entertain you” once I’ve started breathing again!
It’s Monday, it’s cold, you have a monkey on your back goading you about all the stuff you need to do today, but can you just stop for a minute and come on a little lexicon excursion with me …? Are you feeling like you might like to visit the bizzare mechanics of my brain? Come on, take a seat, buckle up.
Give me a moment ….
They say “Seeing is believing and believing is seeing” but what if you cannot trust what you see with your own eyes? What if you are unable to trust the very ” reality ” playing out in front of you? Can you grasp this idea?
Where does that leave you? Infact where the hell am I? ( and you, if you’ve got this far…?)
Have we fallen down the rabbit hole into a harsh madness and a world of nonsensical thoughts? …. where is my mind? And who exactly am I? Who are you? I’m not so sure I can trust myself. ( please hold onto me!) Does this feel comfortable? Are we lost? ….yes, we are gone.
What if I unveil to you who I am?
At this very moment in time I feel safe ( November 16) but what if you ever feel like life has blown a great big hole through you and left a ghost soldier silently standing before us?
Can you find me? “GAS! GAS!” ….RUN!….
It is an ordinary moment in June 2016 and I am feeling ” peculiar” I’m at home. Concerned faces watching me. I’m sat down and I am feeling very very anxious…. Everything falls away….& time reverses….
Now I am the beautiful face of a young man about to be blown apart, a riot of sound, fire and smoke. All resemblance of human life literally pulled apart and floating like a sinister confetti of body parts in the acrid hazy air and landing in the no Man land, torn apart and lost for ever.
Where are you? What day is it? What time is it? Am I still me and are you, you? I’m not myself anymore.
I’m lost to the Somme.
This is the most awful nightmare you could ever have while being wide awake. A normal day is playing out but I’m not there.
Who is that screaming? Me, Us.
This is fleetingly standing on the edge of insanity but not being able to grasp the now, the real. This is an virtual trick of the mind transporting us into the hell of whatever my mind has decided to latch onto.
I have taken you with me to that battlefield.
We didn’t survive. How could we?
We went over and in an explosion of light, our souls were taken. Boom, hear the sound of the whistles, the guttural cries of boys dying.
How? How? How? We are so terrified that we scrunch up our eyes and we pray for joy. We wait it out. It feels like forever.
It is forever ….
We see how sad life can be but we want our life, ( but we’re falling ….) where is our life of love?, this 2016, so we breathe and we keep seeing the battlefield and the hell of war until we lose consciousness, which is a precious respite. We scream and then we fall into the black.
We hope we make it back to our reality. This is not time travelling, this is the awful de ja Vu hallucinations and fleeting illusion of an Epileptic seizure. It was real and it was not real, a turbulent paradox.
I have never been so terrified of my own imagination or feared for my life until this point. EVER.
I sleep for 14 hours and when I awake I am safe in my own home and all is as it should be.
I am wary of what I watch.
The Ghost soldiers are brave and gave us our freedom but I can never return to that time. I cannot feel that great sadness ever again.
I gulp down the anti seizure tablets and hope that next time I fall, that I make it home.
Seeing is believing. Believing is seeing. Is that right?
I couldn’t write this without taking you with me, because I needed you there to hold onto because when it really happened I was all alone and so frightened, it has taken me until now to write about it but my heart and mind feel better for the release.
My wonderful brain played out an awful scene but we made it, to the end of this blog. Together, and we have our freedom because of those brave Soldiers.
Thank you to our glorious brave.
” I think about us diving, diving off a rock into another moment ” Kate Bush
It is definitely more about life than death this time, but follows the unexpected trajectory of a tilted Sky, or more so , perhaps the miss firing of neurons in my brain that resulted in my world being turned upside down once more.
I remember clearly standing in the middle of a wood staring straight up at a grey brooding sky and watching several rooks circling over head.
I liked the shape of the trees and I was casually waiting for the clouds to pass over and for that little burst of light to shine on the branches so that I could frame the shot I wanted. I waited patiently …. Enjoying the ever changing sky, my camera poised …. Just waiting …
I remember vividly that I began to feel as if the rooks were screaming at me and that maybe I should wander off and leave them to their strange squarking dialogue but I didn’t move because I couldn’t move. I just stood and waited looking up, up , up at that wonderful expansive April sky. And then the light came but it didn’t feel quite right, as if some giant above was playing with a dimmer switch and making it very bright and very dim at the very same time.
I remember thinking at that very moment that this wood would be a beautiful place to visit in the autumn. It was only early April and Spring had not quite begun, but I am one for wishing time away and then it did feel as if time had fallen away as suddenly the sky tilted and the light was extinguished. Silently I fell into the leaves and debris of the woodland floor.
I woke up to the smell of soil and the sound of rain. It may have been 2 seconds, 5 seconds or 5 minutes, I have no idea. I felt removed from it, like I was looking down upon myself and unable to think coherently I just lay still thinking that perhaps I was in a dream that involved very noisy birds and a sky that wobbled.
My son and husband were further along the woods and I couldn’t see then but I could hear their chatter and my sons gleeful laugh. They were playing jumping on stepping stones. I lay very still and looked up, the clouds and rain had formed a dark, dark rain cloud and the rooks had calmed and headed off.
I lay there until they found me and as my son approached I unsteadily scrabbled up , smiling, and saying soothingly that Mummy had fell over, and we all laughed and decided I must have lost my balance trying to get that ” Perfect photo” but that moment had gone and I knew those dark foreboding storm clouds announced a change and one I could not anticipate. That wasn’t my first introduction to Temporal Lobe Epilepsy but it was the first in which I finally realised that I shouldn’t discount my ” faints and falls” as merely being just faints and falls, suddenly I didn’t quite trust my own inate voice or gut feeling, and I knew it was more than a tumble. So with unsteady legs we slowly walked to the cafe on the farm. I was shaking violently and felt very cold, I made it to bench and sat down and then the lights illuminated brightly, the cold harsh strip lights flickered and Wavered and finally went out again and I was plunged into darkness. The last distant words I heard were ” Lou, Lou!” Then “Quick, get an ambulance, she’s not breathing” and the sound of scraping so loud I thought my head might explode as my husband forcibly pushed the wooden table away. Silently I lay on the cold barn floor having a series of epileptic seizures and intermittently not breathing.
My husband thought I had died and my beautiful boy had been scooped up and occupied by a faceless kind lady whom I never saw who gave him chocolate and patiently sat and coloured farm yard drawings from the farm office and kept him safe and dry ( for now it was pouring down, so I was told) due to the remote location the ambulance took 40 minutes winding its way along country Lanes. By now my seizure was over and I lay quietly staring up at the lights that they had kindly switched off and thinking ” where is my baby? Where is my baby” because I couldn’t remember his name.
I do not remember the ambulance journey to Warwick Hospital. I didn’t stir. I slept a dreamless cold sleep. It would be another 3 months before the Neurologist would see me and I stupidly signed / discharge myself out of the hospital ( against advice) because all I wanted was my baby and my own warm bed. We drove home, yet another empty journey I don’t recall. I then slept deeply and when I woke up I felt like me again so my brain played a trick and said ” Oh silly you, you just got over tired. This is your fault” and so I had to experience more tilted skies and hard, hard falls until June when I finally, finally gave myself permission to STOP, as the ambulance took me to hospital the paramedic said those words again. I think there is a chance you could be epileptic, she had remembered me from before. ” I’m just tired” I replied in my strangely new stuttering post seizure whisper, and she smiled knowingly at me.
The neurologist poked about in my head and scanned it and listened to my accounts, and others and read all the reports from the 8 admission over the year and declared ” I feel you have temporal lobe epilepsy, we will start you on some tablets, they will help” and so they started me on a low dose and I hope it would be the end of that but of course it was just the beginning.
I will return to that wood in the autumn. I will get that shot. I will wait patiently for the clouds to part and that beam of light to catch the leaves …. And the light will be just right ….. Click.