Join the Conversation on
89.9K people
0 stories
2.3K posts
About Epilepsy
Explore Our Newsletters
What's New in Epilepsy

I Want To Be Sleeping Beauty

Some feelings or symptoms are like old, familiar friends. Epilepsy is like that for me. It puts me in depression, but when I’m not in it, I don’t remember it. I remember it being bad. I remember the darkness. But it’s different the second, third, and fourth time. It’s the difference between remembering what your room looks like and walking through the door. Being inside it again and feeling everything around you.

When the episode starts, it can be slow at first, but some sort of intrusive thought may swoop in to annoy you, and then it’s gone. It’s like a fly or a strange smell you get a whiff of on a road trip. When it hits you, though, it’s everything, and you can’t get out of it for the rest of the day.

It’s who you are; you’re nothing else. On the outside, you’re the same. You smile and bat your eyes at the cute boys and dance a little, but in that episode, it’s just to pretend. Like you’re 5 years old again, putting on a show for your parents.

You start to feel alone. You are unbelievably alone because you believe that there is nothing you can do to fix this disorder you have. The seizures will last forever despite the surgery you just had.

You believe you can be with someone you love, but you’re not really with them at all. We think we know what’s going on inside someone’s head because we are close to them and they tell us mostly everything, but the truth is, you don’t know what’s going on in a person’s life at all. Everyone is fighting a battle you can’t see.

We all have blind spots. There’s something wrong with you, and it’s exhausting. You feel helpless. There is a void. Existing takes so much energy that you just want to sleep for a little while, like sleeping beauty, wake up later, and it will all be okay. You want to sink into a hole where no one talks to you or asks questions, so you don’t have to say, “Yes, I’m doing great!” Because the truth is, I’m not doing great.

Anyway, it’s familiar. I’ve been here before. I got out of it before. And I will get out of it again. But getting out of it becomes the room that you remember but aren’t in. And that is the scariest part.

5 reactions 1 comment

Living with LGS

My husband, son and I had just finished eating lunch.  My husband asked me if I enjoyed my meal.  I replied, “yes”, but I told him that what was actually controlling my thoughts and dominating my mind throughout our lunch was, “what is the quickest way to leave this room?” My husband said he felt the same.

To back up a bit, our family was on vacation cruising through the bright blue waters of the Caribbean.  My husband, son and I were eating lunch in the fancy dining room of the cruise ship.  We were supposed to be at ease, relaxed, and enjoying our vacation.  Our 24 year old son is diagnosed with multiple disabilities, he uses a wheelchair, cannot talk and is diagnosed with Lennox-Gastaut Syndrome (LGS) which is a rare, hard to treat form of epilepsy.  It’s the LGS that has my husband and I on our toes.  It is quite normal for our son to have several seizures throughout his day.  Unfortunately, our son’s life, our lives and our other children’s lives are all affected by these seizures.  Everything we do as a family we plan for and take into account how that activity will affect him.

It’s this extra planning, unpredictability, and worry that has elevated our senses into overdrive after 24 years of living this life.  When we arrived at the dining room we asked to be seated in the far corner of the dining room, where it’s quiet and the eyes of strangers aren’t focused on our son, rather on their own families and fancy food.  We can “tuck” Andrew’s wheelchair into a less prominent place. We want to have this time with our son, enjoying our lunch and good food.  That is why we are here.

What we can’t predict though is when a seizure will come.  We can’t predict what type of seizure will come.  We can’t predict the strength of the seizure.  So, we are on edge.  We’re on edge even more because we’re surrounded by people.  We search for the exits.  We search for the easiest path for the wheelchair to take through the maze of dining room tables and chairs. What’s the quickest way out of this room so that our son can recover with dignity?  Because If the seizure does come, our son’s arms and legs jolt and shake violently.  Our son gasps for air, his eyes roll to the side.  Andrew’s seizures are powerful and loud.  When a seizure comes, for my husband, son and I the happiness and mood of the moment changes in an instant.  Is our son okay?  Do we need to intervene with emergency medication?  Will more seizures follow?  Our questioning and arguing of whether we should have our son out and about now dominate the main topic of conversation.

On this day we actually left the dining room without seizures. Thankfully.  Something so simple, a gift, and a great blessing in our days living with seizures.  A simple meal on a vacation with our family.  Lunch on this day is a success, and a relief for a mom and dad who live their lives knowing the next seizure is looming.   We wish for even more moments just like this.

See full photo

The Spectrum of Reality, which we are all on

The law of opposites helps you understand reality through contrasting states.

On / Off (Binary)*

Passive / Active

Construction / Destruction

Chaos / Order

Confusion / Clarity

Thought / Action

Conscious / Unconscious

Mania / Depression

Sleep / Wakefulness

Memory / Imagination

Extroversion / Introversion (see also recent post here mentioning internalisers and externalisers as modern update on these terms used by psychoanalyst movement but giving details of recognisable behaviour patterns and my post on the Pagan site on The Mighty, The Systemic Universe / Two Worlds Exchange).

For instance it can also include being on the cusp of a decision, driven by emotion (fear / excitement); speedy action versus careful thought, which is projection as opposed to introspection (old age is less hasty in action than youth as it has learned through the experience of life that the young do not as yet have): Doers are not grounded (dissipated attention) as much as thinkers are (concentrated attention). The young are therefore more likely to be rebellious than the old, who will be more conformist, that is organised as opposed to being expedient in thought.

Destruction is unwillingness to be responsible for something as construction is turning thoughts into reality.

Balance or the middle path is expressed in an old saying about consulting doctors diet and fast, exercise and rest. In other words it is about not over-thinking or under-acting etc. There is no right or wrong way, just being in the position you are in now, with regards to your journey through life / existence.

* See epilepsy treatment where left and right halves of brain were separated and one hand would carry out an action and the other would immediately countermand it.

10 reactions 3 comments

Is it self- harm? What can I do?

I have dealt with epilepsy, depression, anxiety and more the past years (I'm in my mid 40s). I've never self- harmed, other than twisting my hair when anxious. I'm finding myself scratching and digging my nails when I'm anxious, but don't necessarily realize I'm doing it. I have scars on my arms and under my watch. I haven't talked to my therapist and don't have an appointment until next week. I don't know if this is self- harm, anxiety, or what is going on. I don't know if I should tell her or just fight through it myself. #Selfharm #Anxiety #Depression #Epilepsy #MentalHealth #Selfcare

70 reactions 15 comments
See full photo

A pain in the neck (part 1)

I am thankfully passed all this but I had twenty or more years of migraine (now 72 but was told that by my mid fifties I would lose them. I didn't. Fine if you are a menstruating female but not true of a grumpy old pensioner, trying to write. Mine disappeared in the mid sixties. In light of this here is a story I wrote from that time:-

I've got to get this paperwork finished by tomorrow but all I can hear is this thump, thump, thumping bass above me. I want to get into my head. I 'need' to get into my body, to get this stuff done but no matter where I go in the flat, this incessant noise grabs my attention. I could kill the bloody bastard!

The pills don't work anymore. I've got a splitting headache and I know tomorrow it will have turned into a full blown migraine: Three days in bed, vomiting, sweating like a pig, stuck in delirium...

It starts with tension in the neck. I can sometimes feel a sharp pain where it joins the skull. One day I know this blockage will turn into a stroke that will kill me but there's nothing I can do about it. I tried anger management but left after punching the guy who ran it. He knew how to push my buttons, so I pushed him back. The guy above me is different. I fantasize about taking a sledge hammer to his music centre (Kicking in his door and kicking that thump machine into a million pieces). Any resistance from him and I'd do the same to him. The reality of course is different...We pass in silence or polite greetings. He doesn't care one iota about my feelings, the arrogant sod. It's like being in an abusive relationship. I hate him but my feelings don't touch him. This is a living hell.

I won't let him drive me out of my own flat. Sound smashes your ability to concentrate. It splatters all over the place, so that you become a flat, empty, mindless husk like him. Responsibility is about seeing but he wants to remain blind. Drinking, partying to all hours. Where does he get the money from? How's he even fit for work? Still I never am - mainly because he makes me sick, literally! Why do we have to carry these wasters? Why!? Why!!? Why!!!?

A silent, contemplative society - that would be my dream (A monk to his viking raider). Peace! Peace! Peace! That's all I want! Christ, is that too much to ask?

I'm a workaholic - I admit it but where would this society be without people like us? They'd just let things fall apart or worse still, rip them actively to shreds. They'd rob people, beat them up, threaten and cheat them, just to get their needs met or expect to be spoon fed like the babies they are. They resent the world and everything in it, including themselves. Work is a four letter word in their vocabulary. Honesty is another swear word to them. They'd rape and kill, to get what they wanted but ask politely? No way! They kill cats, grunt obscenely and drive their cars and lives into the ground because they don't really want to be here. Drugs, alcohol, lack of sleep, reckless abandon of all sorts - anything but settle down and develop inner resources, inner knowledge for dealing with the world they find themselves in. They're damaged goods that they helped damage. Self-sabotage motivates them, not thought. They call people like me boring: Shopkeepers, accountants, academics just as they called the first farmers the same because they were the mighty hunters - posturing and pouting, in their antique roles as time passed them by. They see themselves as predators still and we as their prey. And why not? We've got the real power in society, not them. They are the victims of this world - dinosaurs left behind when the rest of humanity caught on, to what we were about. We want to see a different world - they are only happy if they can take their old one with them. They want to convert the new world to their old ways, dragging us down into their hell. We don't conquer the outer world and turn it into replicas of our own lives. we conquer ourselves and our primitive fears, to better appreciate anything new and different we encounter. Still enough about them and our efforts to convert them to a better life, raising their consciousness to our level.

I know an attack is coming on because get this vile taste in my mouth that reflects the mental bitterness I feel inside. My skin feels like it's flea infested. I get severe indigestion because I feel life is hard to swallow. Perversely I also get the munchies, where nothing I eat satisfies this craving inside (Stuffing down my feelings because being sick means no longer being able to control them). Coffee is one of my triggers. I know this from vomiting up a cup I'd drunk half an hour earlier, in a distilled version (no sugar or milk, just the black steaming caffeine).

I reckon the reason migraine is on the increase in this society, is because of the ever increasing pressure on its members. It's like an orgasm or a massive electrical discharge. Things build up to a climax then explode like a volcano. Epilepsy is that way and I think migraines are no different.

It's like trance dance as seen in voodoo and whirling Dervishes too. Continual motion, leading to inevitable collapse of the organism through adrenal fatigue or society through panic attacks par excellence! I believe were just vacuoles sucking in and blowing out experience or electricity generators, accumulating then discharging energy. I believe too this explains ageing as motion between two points and again dementia as chronic delirium or loss of contact with the world, leading to balance problems, loss of appetite and inability to keep food down (The big trip of unconsciousness as opposed to small deaths on the way). All of this fascinates me and why not? My doctor says I'm talking rubbish in his own particular, polite, professional way. I accept his reaction with a pinch of salt. What does he know? He should be on my side of it.

I awake the following morning. Awake, is that what I really am? I feel like death, staggering about the flat like a zombie. It took ages to drag myself out of bed and look in the mirror. Yes that confirms it - I am dead again. That sallow skin, those lifeless eyes - black around the edges, bloodshot within. Tongue out. Yes it's that white flag of surrender again (another overnight snow storm, covering it). Sometimes it's yellow with vile bile and it tastes bitter and ugly like my mood too.

I just want to curl up and die - oh God, here it comes! The wretch throws himself down before the God of the toilet seat and retches. He prays to the Lord of Vomit. 'Please accept this humble offering - yurp!' Oh God, here we go again. Yurp, yurp, yurp! Nothing there but I don't listen to my stomach. Once more with feeling - yurp!'

I sit there for five minutes, leaning back on my heels. Is it over? Is another eruption on its way? Eventually I stumble back to my feet and walk shakily back to my bed. 'I'm ready for my shot, Mr Romero! No, I don't need anymore make up and I remember my lines perfectly. Groan, grimace, stagger isn't it?' I don't need the thump, thump, thump of his music above me anymore - I've got the recording going on in my head already. Sorry no, make that the sound of blood pounding around somewhere in my crunched cranium.

2 reactions

Disabilities taboo topic today at work 🤦🏼‍♀️

So I don’t work at the summer camp at y anymore (yay!). Now I work at kids corner with preschoolers and babies/toddlers… as my summer job until I get done in July! Today let’s say it’s interesting but something I want to slap the employees and maybe the parents but mostly the employees on this one for NOT teaching the older preschoolers like 6 yrs or 5 yrs something like that, (older age in preschool different ages) one of the girls was play Barbie this morning and I was playing with her and she told me one of the Barbie’s was broken. 🤦🏼‍♀️ (one of the legs isn’t there but the rest of the Barbie is) and I told her do know why?! She said no. I told her because it’s ok to be different! I was in a “really” blanked face for this kid for telling me this Barbie is broken. I have a medikidz comic book that explain about epilepsy it’s not to much in depth that kids won’t understand but some friendly depth things that kids would understand and the kids corner doesn’t have books and toys with representations on disabilities! 🤦🏼‍♀️ One of the employees told me it’s “NOT” their job to teach them it’s their job to keep them safe and fun, the school and parents should be the ones teaching them but also it’s whatever on the parents if the parents teach them or not! It doesn’t have to be to much depth on it about disabilities just some things and make it friendly. The different Barbie will be shown tomorrow.

See full photo

Crispy, crunchy day (part 1)

God, that wind is bitter, in a yellowy-pinky sort of way. Need to put something warm and woolly on.  Woolly - hmm... that has a nice, kind of grey sound to it.’

Mike walked out the door as a gust of cold wind hit him in the face.

‘That whistling wind was in A flat - you’d have expected it to be in C

sharp!’ he laughed to himself.

‘Oh well, this won’t get the cow milked or the beer barrels down the

cellar’ he said to himself and walked on.

‘This is definitely hot chocolate weather’ he thought as he waltzed on

down the road.

‘Morning, Mrs Wilson!’ he grinned at the approaching woman.

‘Morning Michael!  Cold day!’ she replied.

‘Yes but there’s a tinge of orange in the air’

‘If you say so’.  A look of ‘Oh my God, here we go again, crept across her embarrassed face, which turned slightly away at this, too her, unfathomable remark. Michael continued ‘You can almost taste it, when the wind blasts you in the face’.

‘Can’t argue with that’ Mrs Wilson said in a bemused, rather than amused way.  She looked at him strangely, knowing this was just part of him and his strange family.  His father for instance and the way he referred to all lawnmowers as being ‘Grahams’ - moaning, tough, stubborn and always arguing with you, rather than just cutting the

grass as they were simply meant to do. ‘Nutters, all nutters’ she thought to herself ‘ -but mostly harmless’.

Michael moved off. ‘Well, shopping to do, must dash!  Goodbye Mrs Wilson’.

‘Yes’ she said, then realising she was looking at him strangely, she shook herself free of the self-induced trance and said ‘I must go too’.  Turning her back on him, she walked off as well. ‘Why is it always like talking to the Wooden Tops, when I meet that boy?’ she

muttered to herself with regret, before disappearing down the street.

‘Must remember to get some 92’s in Tescoes’ Michael thought to himself.  ‘I really love that flash of red, which the number 92 brings to mind (92 evoked scarlet in his thoughts, which was a code for peanuts, for no sensible reason he’d ever been able to discern but it

was always 92-scarlet-peanuts as an association in his head).

Great uncle Ernie was funny.  He used to say that Tuesday made him sad - not the day itself but the name. All he had to hear was the name repeated, to feel himself slipping into a bleary eyed state.  Kids at school would take advantage of this to make him burst into tears by chanting 'Tuesday! Tuesday! Tuesday!'

'What's up Smith?' a teacher would innocently ask.

'They've been screaming Tuesday at me again!'

To which the teacher would respond by clipping him round the ear, saying 'Pull yourself together boy!' or a baffled 'What the hell are you on about?' again followed by a clip round the ear, for being cheeky to the teacher.  'I don't know what your game is but I'm not

putting up with this utter dribble - do you understand? See me after school.'

'Yes but-'

'Don't but me or you'll have to stay behind for longer!'

When he was older, he used to say a bit of how's your father, smelled of chestnuts at the crucial moment, for some reason ('Could be to do with Christmas and stuffing!' he always said with a wink).

As a small child, he apparently nearly jumped out of his seat at the table because an orange's bitter taste, made him see a bright, green flash in front of his eyes.

'I've always been wired up strange' he always said, when reminded of this and other incidents, that elicited peculiar responses in him.

Uncle Dick was totally different.  He became a maths teacher.  He said that he was so good at it that numbers jumped up at him.  Colours and geometric shapes, stood out like   3-D versions of the real 2-D things, floating in space before him, like what we'd call holograms I suppose.  He also used to say that sound was a pyramid and that high

pitched notes were at the pinnacle and low, bass sounds were naturally 'at the base.'  He also said that the pyramid was coloured - the bottom being dark and physically heavy.  As you went up it, it got lighter and lighter, going through all the colours of the rainbow (and

then some), until you reached the very top which was bright and 'light,' in both senses of the word.

He also used to say that he could see everything in layers or scales, like music (He even said emotion was the same); you name it - it was all graded by opposing forms of existence, from hard to soft, up to down, inside to out, fast to slow etc.

He further said that males were hard, rigid, spiky, crude and the feminine was marked out by being soft, round and refined. Women were fluid - melted by their own warmth, into one form or worn smooth by time and motion.  Men on the other hand, were rigid crystals -

separated by their cold, hard, incisive attitude to life.  Women were settled - coagulated into a rounded form, like The Earth itself but men were always unsettled and unsettling (up in the air).

It's funny but he was a genius that way because I was useless at maths myself, plus couldn't tell right from left and was always getting lost as a child because I had no sense of direction.

Auntie Jane was a brilliant artist and the only member of the family to get anywhere, apart from Uncle Dick.  She was a mean piano player too, preferring Blues and Jazz because they inspired her so much, with their dark, opulent colours, she said. 'Oh those rich, velvety, jazzy purples,' she'd croon, when tinkling the ivories.  She unfortunately

suffered from epilepsy.  It was her opinion that the sheer influx of some colours, flooded her brain with so much electrical activity, that she collapsed into what she termed a mental orgasm of riotous shades. Eventually she ended up in a mental asylum because of it.  I used to suffer from migraines for the same reason.  Particular sounds would overwhelm me and the inside of my head would reflect Disney’s 'Fantasia' - flashes of red, yellow, magenta etc.

Cousin Tom used his synaesthesia in a constructive way. 'The Great Tombola!' as he was known.  He could memorise telephone books as a child - not that anybody particularly wanted him to but that was his party trick each Christmas.  He was even better at doing mental arithmetic than Uncle Dick but the latter didn't care too much, saying he knew several Mathematicians who couldn't count their blessings, let alone the change in their pocket.

1 reaction