What it feels like…being diagnosed with epilepsy.

By  Clare Kelso, Scotland.

I guess you could say I’m just a normal teen, just depends on how you look at it.

Everyone has a few hurdles in their life, some bigger than others and I think some would say that I’ve had more than a few. My name is Clare Kelso and my hurdles all share one name – epilepsy.

A lot of people find it normal to take pills for many different medical reasons but how many find it normal to have taken nearly all the possible medication you could try without some kind of reaction?

From hallucinating to being such an angry and upset child that you have no one but your family to defend you for your behaviour, as they are the only ones who actually understand that you just aren’t yourself; I’m afraid to say this is normal for me.

I was first diagnosed with epilepsy when I was six. Even then the doctor didn’t think it was epilepsy until by chance I had a seizure in front of them. At that age I had daytime seizures and to be honest I wasn’t that upset about it. I have a twin sister and had lots of friends in school. I admit, I didn’t enjoy having a seizure, as I couldn’t do more than wait it out while the whole class stopped to stare.

Eventually my mum had to come into school at break to watch me, as the school had no experience in epilepsy. Being a little girl, I thought it was cool having my mum at school but now I realise that shouldn’t have happened, as it was unfair to my mum but eventually the school felt confident with me and it stopped.
Like every young person, moving to high school was scary with a new building, teachers and for me new seizures as they developed into night seizures instead of daytime. Although some would think night seizures would be less worrying it only cause more in my family as the seizures were more violent and I had become a high risk of SUDEP (sudden death in epilepsy).

I had just started a new medication for school and so far it was controlling the seizures but by then that never meant much as it could easily take a turn for the worst. It wasn’t till a year later we learned how bad a turn I’d taken until it was too late.

In my second year of high school, we were put into certain classes depending on the level our teachers thought we were at from the year before. I had always been in the highest groups in primary with my sister and expected the same for high school. However, while my sister was put in the highest math class, I was put in the lowest. It was only then we realised how dumb I’d become especially when I was taken to be tested at hospital and before the test started I was asked the usual like my name and date of birth and somehow I couldn’t answer my date of birth.

It was like I’d never been asked the question ever before in my life. After being taken off the medication it was too late for my mathematical skills and my first year of high school had been wasted.
As the years went on I eventually didn’t want to go to school. My sister was in all the top classes with her friends and though I’m known to get along with everyone I still felt out of place and that I’d been cheated out from my rightful spot. I’ve never been shy about my epilepsy and happily explained to people why I was off school and would answer any questions but still no one fully understands something unless they’ve experienced it themselves.

One group of friends that my sister and me shared asked us to go on holiday. It would be the first any of us had been on holiday without our parents. My parents have never held me back from doing things in my life but we agreed that it wasn’t safe to go away as my seizures weren’t controlled. My sister, being a true twin didn’t want to go away without me and told our friends as such and for some reason they thought I’d be fine anyways.

I was always absent from school after a seizure and was never shy to tell them how I’d be tired after or may have a cut on my face from scratching it and once I even chipped a tooth during one. It was only a few days later that I was taken to hospital in an ambulance during the night.

I think it made my friends open their eyes just ever so slightly to what I’d been dealing with but everyone eventually closes their eyes in a blink and they went back to their old ways.
Eventually high school ended and I didn’t have enough qualifications for university and went to college for a year to do a course on childcare even though I had no idea what I wanted to do. I realise now that maybe college wasn’t for me as the stress just brought on more seizures.

During that year I had surgery called depth electrodes where I had seven holes drilled into the left side of my head and electrodes were placed on the surface of my brain. These holes were left open for a week while I was in hospital as they kept me awake to encourage a seizure to record to see if surgery was an option to become seizure free. The electrodes were then taken out by a second surgery at the end of the week.

This interfered with college and I had to get an extension for my placement in a nursery where the staff weren’t very understanding or supportive. Sometimes it felt like they needed to ‘see it to believe it’ and if they had seen me have a seizure, I don’t think that they would want to see it again.

I’ve always thought it’s probably worse to watch than experience the seizure as who ever is with you has to endure that helpless feeling and I think that’s true as unless the person needs their emergency epilepsy medication, all the person watching can do is wait.
Nowadays, I’m recovering from surgery from eight months ago where surgeons cut away a thickening in my brain. The risks to this surgery were that I could lose control of my right arm and my face might droop but thankfully, all that happened was the palm of my right hand went numb for a while.

As usual, people don’t understand that the brain controls everything in the body and that means surgery takes a while to heal but not everyone is as smart as me with extra brain. Recovery was hard at first as I found it hard to even speak and all of a sudden counting to ten was impossible. I’m still finding it hard to find my energy on certain days and I try to volunteer in an special needs high school when I’m up to it but so far no night seizures, only small jerks during the day that developed a few years ago where I tend to hit myself and my glasses end up flying.

It’s still early days as the seizures could still come back but for now, I use lots of hairspray to keep the tufts of hair growing back from the scar (that runs in a wavy line from my ear to the top of my head) in place and frequently use brain surgery as an excuse not to do the dishes anymore.