” Let me entertain you” ….

Blog 4

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!

I am not impressed.

Epilepsy speaks ….

xx

Advertisements

I lost myself

img_3471I lost myself ; Blog 3

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

To be continued …..

 

 

Epilepsy Speaks