My Ultimate Obstacle – Epilepsy

IMG_1323

Obstacles

This is the side of my bed. A ceramic tray covered in medication and various other pieces of rubbish. I take all of that medication, every day, and yet seizures still happen. Perhaps less frequent occasionally, but as my current neurologist told me, ‘Epilepsy is incurable, you will never be seizure-free’.

At least he was honest.

None of my past neurologists were.

I wanted to be a teacher. Since I was a teenager, that was the dream. To be stood at the front of a class, either secondary school teens or witnessing the age of innocence blossom with knowledge, and try to squeeze even the smallest piece of enthusiasm from them.

However there are rules and regulations. Of course, completely understandable. But those neurologists sat on the other side of various desks told me that my dream was an achievable goal. Something that it was good to strive for. Little did I know they were partially trying to placate me and partly trying to offer me hope.

To teach you must have been seizure free for a certain duration, seemingly impossible for me. You must know the cause, or be aware before a seizure is about to occur, in order to be able to leave the room safely and inform someone. Neither of those apply to me either.

Since developing the condition/disability (however you want to class it) at fifteen I have never been over a month seizure free. They have changed and developed over the years, just as the medication has varied.

That will always be my ultimate obstacle. It cannot be cured. It cannot be overcome.

In fact, when you think of it… epilepsy isn’t an obstacle outside of oneself in any sense. It isn’t something I can see and bump into. Neither can I ‘work through it’ psychologically. It is literally part of me. I have to listen and live with the limitations that epilepsy causes.

Or is that giving in?

 

Bringing Brian to the Garden

IMG_1273

Brian, the snail, is now a fairly well known character throughout many generations. Remembered from Serge Danot’s The Magic Roundabout, or recently discovered through the animated children’s film of the same name, Brian the yellow and red snail, wearing his orange scarf proudly is well recognisable.

Remarkable in it’s simplicity and haunting with the theme tune that progressed in creepiness to any viewer, The Magic Roundabout, beginning it’s airing period in October 1965 is a show well known to my uncle.

My uncle who is a keen gardener.

In fact last year I added a gnome to his garden.

IMG_2635

A nice blue gnome.

IMG_2631

This time I want to make my gift something more personal. So, as the rest of my art group were picking out large snail ceramics to paint for their gardens, I chose mine. The lovely women I paint with weekly all intend to do some form of realistic portrayal of a snail… Me on the other hand intend to recreate Brian.

IMG_1257

Sat on the table, yellow and pink in his body and red throughout his shell, it appears quite the contrast to the ‘normal’ snails placed around him.

IMG_1298

I prefer unique… I prefer Brian.

I have been told it’s a good idea to have an ongoing project starring within your blog – and so for now, as I’m only three base coats into his creation, I’ve decided to follow Brian from the studio’s table, right into my Uncle’s garden.

 

The Stairway for Safety

Stairway
There are many staircases I’ve walked up and down without a second thought, and yet I remember stepping up the hidden stairway in Amsterdam with such sobriety.

The annex, now transformed into a museum to recreate and highlight those years that Anne Frank’s family, Hermann and Auguste Van Pels, their son Peter and the last of the group Fritz Pfeffer spent in hiding.

anne-frank-stairs

I remember at the age of fifteen waiting in a line for my chance to see the bookcase that maintained their safety from 1942 through to 1944. My first thought at seeing it was shock at how small it seemed. How, as doorway, it was low and thin.

Then the Stairway.

I remember even then wondering how people got up those initial steps. Cramped and thin, it was almost a metaphor for the conditions these eight people were going to find themselves in until their unfortunate capture. ‘Unfortunate’ of course seeming too pathetic a choice of word to really express that horrendous moment.

The small steps barley held my size six feet, leading me to believe they must have been strengthened over the years for tourists. However, moving aside from the repairs and alterations that time and use deem necessary, the small steps matched the steepness of that first stairway, leading of course to another.

stairs-to-the-hiding

It appears to simply be a normal ‘stairway’, leading up, just as in a usual home. But these steps didn’t feel that way. The whole Stairway didn’t feel that way. It was suffocating.

The Curve of Virginia Woolf

Curve

‘That would be a glorious life, to addict oneself to perfection; to follow the curve of a sentence wherever it might lead, into deserts, under drifts of sand, regardless of lures, of seductions; to be poor always and unkempt; to be ridiculous in Piccadilly’
Virginia Woolf – The Waves

That woman writes in a way that is mesmerising. It never stops to the point that one single act within a day, even something as simple as Mrs Dalloway stepping out to buy flowers, can be filled with such imagery, mixed with subconscious feelings and expressions.

Virginia Woolf seems able to curve all aspects of life, from our thoughts to our physical acts, just with the use of commas, semi-colons and beautiful language.

And perhaps her own life can be viewed with the same metaphor. Diary entries and non-fiction writings reveal the level of passion, confusion, suffering and happiness that fuelled that woman’s life. Diagnosable now with many conditions – from bipolar disorder to mild schizophrenia, her life moved in a downwards curve. At its height fuelling the masterful works for which she is now well known. Whilst at it the curve’s beginning and end, pricking her mind with these well diagnosable conditions, and sadly resulting in her suicide.

Thankfully her life was a curve, rather than a flat line.

 

What Would You Do – Meeting an ex-Friend

 

What do you do when you come face to face with a person that once was a friend, but now simply isn’t? I’m not talking about bumping into someone that you simply lost contact with, I mean bumping into someone who hurt you. What would you do?

I’ll set the scene for you.

I was visiting my mum in hospital, only to discover that this ex-friend was working there as a care-giver. We were very close in our teens, doing stupid things, singing badly on trains… Teeny- things really.

Setting the scene a bit more… with a bit of history…

I developed Epilepsy at around fifteen. Back then the seizure frequency wasn’t that bad, but nevertheless I could still have one whenever, wherever. Then came the boy – as always does in these situations. A very protective boyfriend wandered into her life. Then one birthday, can’t remember which but know it was late late teens, we had arranged to go to the cinema or something to celebrate, and she stood me up. After weeks of ignored phone calls, unreturned text messages – I finally got in contact with her. She told me that it was completely my own fault, that she didn’t feel comfortable around me, that the boyfriend wasn’t even sure it was safe, and then generally repeated the phrase that’s stuck in my head all these years ‘It’s your own fault’.

I felt crushed. She was one of the people I could talk to about anything, and as my seizures were getting more frequent and generally worse I needed someone like that in my life. Instead she kicked me when I was down and pretty much told me she didn’t want to be associated with me.

Back to the Hospital

She was walking around the ward my mum was on. As happens in badly written teen movies visiting times seemed to run parallel to her shift. Every time I saw her I just felt ANGRY. How can this girl, that rejected me because of a medical condition, now be caring for people… for my mum! I kept thinking ‘what should I say if she speaks to me’, ‘should I just let it go’, ‘should I be nasty’, ‘should I give her a dirty look’, ‘should I blank her’. It was endless.

And then to top it off – making the whole scenario worse. I had a seizure during the visit, right in front of the Nurse’s Station, whilst all the staff (including HER) were being briefed. Apparently she legged it. It made me feel so weak, as though I had justified her reason for rejecting me.

It is different to seeing an ex-bully, because rather than having had a relationship based on cruelty, we were genuinely close.

Which begs the question – What would you have done?

Why Start a Blog?

I read something interesting online, something that for once I agreed with. Written by a woman who had lived with and through extreme eating disorders, she said something like ‘judgement of our bodies, or the whole I’m-Fat depression is usually brought on by something completely outside of the mirror’.

I found that interesting. I am over-weight. I know this. At 5ft 6, even with the stereotypical hour glass shape, sixteen and a bit stone does not look good. But at the same time, almost confirming this lady’s statements, there is a lot more going on in my life than my size.

Just like so many bloggers who write keenly about their weight, I do not eat badly and I do not eat a lot. I genuinely believe that some people are meant to be big and others are meant to be small. But at the same time, the big people of the world should know it’s unhealthy to transform from ‘big’ to ‘huge’, whilst the small others shouldn’t move from ‘small’ to ‘miniscule’.

But that doesn’t answer my own question.

Sometimes I don’t judge the way I look, sometimes I go for weeks without looking into a mirror and feeling pure disgust. And then suddenly that will change. It will be the main thing I focus on and slide into a depression because of it.

Further on in this interesting woman’s post was advice on how to overcome the ‘I’m-Fat-Depression’. Of course we’ve heard the technique before – a sheet of paper with two columns with the negatives on one and the positives on the other. So I thought why do it on a rubbish sheet of blank paper that will just get shoved in a drawer? Lets do it here.

This blog will be blunt and honest, both positive and negative, happy and sad – and completely me. Hopefully you can relate in some way.