Day 24: Epilepsy Is Like Wax, It Infiltrates Every Area Of Life


Purple Candle Waterfall Digital Fantasy Art by Aquasixio

I fell in love with image as soon as I saw it and what immediately sprung to mind was how epilepsy infiltrates all aspects of our lives.  It isn’t just that we have seizures and that’s the end of it.  It affects our work; relationships both intimate and platonic as it impacts sex; social interaction – conversation and the ability to be able to function ‘normally’; socializing in respect of alcohol and photosensitive epilepsy will limit any light related activities such as clubbing, movies etc.; parenthood and the ability to have children based on medications or the effect of seizures on the foetus; being able to drive – I am unable to as my seizures have never fully been under control so I have always had to make sure that I live in or near the city where there is good public transportation so I can maintain my independence; there’s the consideration of living arrangements, living alone is not always an option for safety purposes and therefore carers may be required; activities and career paths are limited again, due to safety issues.

That’s a handful of areas that epilepsy and seizures can affect.  These are almost basic ‘rights’ which many people take for granted, but for those with seizures it compromises their independence and subsequently makes them doubt their sense of self.  That’s why practically every person with epilepsy that I have met possesses a strength, something I don’t see in everyone.  We have to be able to deal with and get past these everyday challenges otherwise we would crumble.  I speak for many when I say this, we won’t lie back and let epilepsy get the better of us.


Day 22: A Poem


I was browsing a website and found a poem based on epilepsy and seizures.  I was very taken with this one in particular and thought I’d share.  The link to the website and composer is listed below.


Whats in my head

I want to know

why in a moment, I fall like snow

my mind is clear

clear of all thought

why does my mind wish to distort

the truth of my life

all I have done

my body and soul

no longer are one

I float in a world

I do not belong

dreaming of someone I once was

when healthy and young.

Day 21: Do You Know What They Are?


  1. Scotosensitive
  2. Fixation Off
  3. Musicogenic
  4. Primary Reading
  5. Infantile Spasms
  6. Febrile
  7. Frontopolar
  8. Drop
  9. Gelastic
  10. Cingulate Gyrus
  11. Motor
  12. Multifocal
  13. Psychogenic
  14. Absence
  15. Nocturnal Frontal
  16. Post Traumatic
  17. Complex Partial
  18. Operculum
  19. Atonic
  20. Akinetic
  21. Generalized Onset
  22. Tonic
  23. Massive Bilateral Myoclonus
  24. Neonatal
  25. Psychogenic
  26. Primary Motor Cortex
  27. Focal
  28. Medial Frontal
  29. Jacksonian March
  30. Emotional
  31. Autonomic
  32. Myoclonic
  33. Atypical Absence
  34. Tonic Clonic
  35. Simple Partial
  36. Sensory
  37. Visual Reflex
  38. Partial Onset
  39. Withdrawal
  40. Sylvan
  41. Orbifrontal
  42. Clonic
  43. Dorsolateral Cortex
  44. Subtle
  45. Psychomotor
  46. Secondarily Generalized
  47. Nocturnal
  48. Benign Neonatal
  49. Supplementary Motor Area
  50. Nonlocalized Frontal

Many of you I’m sure realized what the list was.  If you made it through to read this, this is just a small percentage of the known seizure types.  Scary, huh?

Day 20: Epilepsy Blog Relay


The ‘techie’ flameless candle!

This post is part of the Epilepsy Blog Relay™ which will run from November 1 through November 30. Follow along and add comments to posts that inspire you!

I walked into the computer room with trepidation hoping against hope that I wouldn’t once again be the center of such unnecessary attention.  I took my place in front of the computer screen and Mrs. Donovan came breezing into the room ready to bark out the weekly exercises which, to my understanding, seemed purely just to warm up our fingers and joints.  As we all began tip tapping away, the longer I looked at the screen the greater the familiar stabbing sensation in my head began to return and I closed my eyes hoping that it was just in my imagination.

A few hours later I was home, lying in my bed, and desperately trying to get off to sleep.   The connection?  Computers and epilepsy.

I struggled as a child with computer lessons.  Numerous occasions saw my return from school trying to sleep off the piercing headache I would get shortly after looking at the screen for the required amount of lesson time.  It was similar with the Gameboy – yes, I know I’m showing my age here, but that must have come out when I was around eleven.  I had a friend who lived on a farm and I always looked forward to visiting because I knew I would get to use all the cool up to date games that she had including this Gameboy.  How I loved Tetris! It was on the drive back that my Mum would put two and two together as I’d zone in and out and have a lot more absence seizures when I’d been playing with it.  Eventually, to my dismay, it became a no go area when I went over to see my friend but, as always, I thought I knew better so I’d just play it when she wasn’t looking, she’d never know!  As I blanked my way through conversations, unsurprisingly, she guessed what I’d been up to.  Looking back now I can’t help but laugh at the fact I genuinely thought she’d never notice!

So, with those particular incidents in mind, with technology developing fast through my teen years, going from a Walkman to a Discman (I was tuned in wherever I went); my school work requiring to be done on a computer without much wiggle room to contest with the teachers, and the idea of this mobile phone that could be taken with you wherever you went, I had to surrender to the growing influence of electrical gadgets.

Many times over the years when I’ve tried to find a rhyme and/or reason as to why my seizures are bad at a particular time, technology has always had a big question mark above it.  Why?  Well, it’s a simple theory.  I couldn’t tell you for certain if it was the cause but common sense denotes that when you have earphones in your ears which are connected up to an electrical device sending music to them, you’re sending extra electrical impulses to your brain to process which in turn is adding to the extra electricity which is already there providing your seizures; hence, it’s just fueling the fire.

However, that aside, I return to the present and I think about life today.  As an advocate for epilepsy, without technology would I have created Finding Freedom for Epilepsy?  Probably not.  I wouldn’t be able to reach out to all the people who read my blog worldwide.  I wouldn’t be able to connect up with all the neurologists and people who work for and advocate for epilepsy associations internationally.  I wouldn’t be fortunate enough to have my articles retweeted on Twitter by those who feel moved by them and least of all keep in touch with my friends worldwide and ask for their support, of whom many I have known since childhood.

Both as an epilepsy advocate and epileptic, technology is essential.  Available to us on our mobile phones alone are hundreds of applications that can be downloaded, it’s truly astonishing.  There’s the seizure tracker, the epilepsy diary, yoga for epilepsy, epilepsy chat, tool kit, seizure detector, apps with basic epilepsy information and there are so many duplications, some of which work better than others, so dependent on the needs one can be found that works best.  And of course, I haven’t even touched on research, EEG and hospital equipment.

So while I deliberate about the amount of time I spend on the computer a day studying and writing and what it could potentially be doing to my health, all I can really do is try to maintain balance by taking breaks, being outside and continuing to fill my house with plants, Himalayan salt lamps and air ionizers whilst I continue to fight for the cause!

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