The Story of My Epilepsy

by Samantha Jade Ash

The following, is a story I wrote, for a magazine at the RNC in Hereford.

My name is Samantha. I came to the Royal National College for the Blind on 30 October 2011. Not knowing what to expect, I was thrown in at the deep end, into a hall of residence, with no-one I knew, and having to do everything on my own. Through this, I made enemies, and had many arguments.

When I was born, the only disability I had was my blindness. That, however, was about to change. Something was going to change my life forever. Something was going to make me learn, to find my feet, to realise everyone is there for you, in times of need. To realise there are people out there who will help you. Even if they disagree with your opinions and views, even if  you had an argument with them, just a few minutes before. Also it would bring me closer to people, in a way I had never experienced.

One month later; 30 November 2011. 09:10 am. 10 minutes until disaster. There I was in a normal mathematics lesson. I was doing my work. Suddenly, after a few jokes  between a student and me, an argument broke out. It started to get heated. Another student told us to calm it down. The maths teacher wasn’t in the room at the time of the event. 09:15 am. Silence, and then… it happens. A tonic clonic seizure. A full blown convulsion. I groaned, and fell to the floor. One of the students called my name. No response. Help arrived from the next room. The other mathematics teacher supported me, once the seizure had subsided. They put me into the recovery position. More information can be found about this on the Epilepsy Society website, or  via their app Epilepsy Toolkit along with Epilepsy Action’s website  and Young Epilepsy.

All this was recorded on my dictaphone. I was unaware of this however. I was in a deep sleep. I knew nothing of time, of what was going on around me, of who was there. I knew nothing. Just silence. Silence. I was warm, calm, serene, I was in peace. Knew nothing of the horror I was experiencing, the convulsions, the thrashing around, the shaking violently, the irregular breathing, and all my muscles contracting and relaxing, as fast as they could. I knew nothing. Wherever I was, I was in a deep sleep, unaware of the crowd gathering in the classroom, unaware, the groan was heard 2 corridors away.

My responses to them, when still postictal, were unpredictable. It was almost like one minute I understood and responded, with mm, or MHM. My responses would be varied and far between. My breathing deep, sharp, and heavy. Short, irregular breaths, that were laboured, and not in a regular pattern. I could not communicate, could not obey instructions, could not form words or phrases. This period is known as the “Postictal” period, the period in which the brain is recovering from the seizure, to becoming normal again. This can last from minutes to hours.

Later, I suddenly came round, to hear a voice, telling me they were checking my blood pressure. I remembered the monitor from the day before. Vaguely, I could recognise just about who it was. It was the nurse.

Why was I in jeans? What time was it? Where was I? All this was swirling round my head. My brain felt empty. No awareness of time. It was frozen. I was in a mid-time zone somewhere. Was it 7 AM? Had I even got up that morning? Wait, is it morning? What day is it? What time is it? Where am I? And who, is that? What’s that sticky substance on my wrist? Why have I got a huge gash in my tongue, that feels like a hole? Is that blood on my hand? It’s bleeding. what have I done?

I couldn’t process words or questions. What made you keel over? What do you mean? What made you have a faint? I don’t think I fainted. Did someone upset you? I don’t think so, I don’t know. What did you have for breakfast? I can’t… I… You can’t remember… No! What cereal do you like? Toast.

I couldn’t remember much. Not even of the morning before the seizure. I’d forgotten I had been given my breakfast by the wardens. Forgotten I was in lectures. What I’d done to my hand? I’d bitten it as I went down. I clamped and had literally bitten into it. There were tooth marks in my hand. I was not to know, until I arrived home it was a seizure. The nurses just thought I had fainted at the time, as I was still when they arrived.

My uncle heard the recording of the seizure. His words were, “That’s a fit.” They echoed like an explosion round my brain. What? Me? I was silent. No! Me, have a seizure. No! How can that be? I thought. I didn’t know exactly what they were, but I knew enough to know, something was seriously wrong. It was not normal. What had happened to me?

Four months later. March 25th 2012. An unusually warm summer’s day. Everyone’s chilling outside. It’s time for lunch. For some reason, I was very happy that morning. It was almost like a sense of euphoria, as if I’d just done something extremely good, and maybe won an award for it. As if, I was as happy as I would ever be, and nothing could change that, knock my emotions. It was like I was, metaphorically, on top of the world. I could do anything I endeavoured to do, achieve anything. I just felt great.

Joyfully, I told Nana on Skype I was heading for lunch. Little did I know, that day was about to change not just my life, but a few other peoples’ as well! 13:00. I’m in the refectory; Lunch is on the table; Suddenly, noise fades; I hear nothing; there’s a huge crash. The table, chairs, the jugs of water, bowls of food, cups of hot chocolate, and glasses, as well as vases of flowers, were pulled over with the force of my fall. As I went down, I hit my head on the hard floor. My skin went a purple colour. Apparently, as I was about to fall, I gasped, before crashing to the floor, with my full weight.

Onlookers race to my aid. “Pull the table back!” was said. Students moved the table back. Staff raced to my aid to comfort me as best they could. An ambulance was called. Medics rushed in; A heart monitor was clipped to my wrist; As soon as it registered, it began  fluctuating; From normal, to slower, then speeded up, and went back to normal again, before it was taken from my wrist. Onlookers gasped in horror; before being told, by a sighted onlooker, that they had removed it from me. There was nothing to worry about.

Of course, there was a lot to worry about. This was my second seizure. Something, was definitely wrong. I knew nothing. I was blissfully unaware that there was a drama unfolding, right before my eyes. I caused this drama. I was unaware, there were medics with me, unaware, of people still eating, and not taking any notice of the drama in front of them. Blissfully unaware, I was being moved, and of the pain I would experience later on.

It was silent where I was, so peaceful, quiet. No-one was around, nothing was around me. I was warm, calm, wherever I was, knew nothing, and felt nothing. Knew nothing of the dramatic events, that had just occurred. Nothing, of the thunderstorm, unfolding in my brain. I was strapped to a stretcher; People were calling my name. No response; just confused mumbles from me.

“What do you want to be called? Sam, or Samantha?”I was apparently asked. Sternly, I replied “Samantha!” I never knew I was aggressive towards those poor medics, until later on. I felt bad for that. They had done nothing to me, said nothing untoward, why was I that nasty to them.

Again, it was a tonic clonic seizure. This time, much worse. Much worse than its cousin; Noise fades into view; I’m in some kind of vehicle, I’m in some kind of seat. It’s a large vehicle, but I’m not sure what it is, or where I am. Where am I? What is this vehicle? Where is this vehicle taking me? Have I been here all the time? Is it night time? Is it day time? Noise fades out once more. A few minutes later, comes back into focus. I’m going over bumps in the road. I hear voices, people talking, a male, and female. I try to move, but can’t. Why can’t I move? What’s stopping me? Is it a belt of some kind? I’m strapped into a seat, but hang on, where’s the seat belt? I can’t find the clips. Hands feeling around, I tried to find the imaginary clip. Where am I going? What time is it? What time of day? And, what day is it? It fades once more.

Suddenly, we’re back. I’m being wheeled into hospital. I knew some of this, but only just began to realise. I’m being wheeled somewhere. I guess I’m in the hospital. Why though I don’t know. I couldn’t tell you.

The voice, then filled me in, “You’ve had a seizure. We’re bringing you to a cubicle.”

“What?” I exclaimed. Suddenly coming to some kind of sense. Why? When? Where? How? What time? Who was there?

“A few minutes ago,” said another voice.

Who is that voice? Who is it? I know it, I think. I can’t remember the name.

“Samantha…” then she said her name. “I came with you, you’re in the hospital. You had an epileptic seizure. Do you know who it is? You were in the refectory.”

No, I don’t know who it is, wait, hang on, why did you come with me? Why are you here? What’s going on? A seizure? Aren’t they serious? Don’t I have to stay in over night? They’re serious! Seizures, are serious! I tried to sit up, stiffness all over. Then, the pulse, a pulsing, throbbing pain. I put my hand to my head. How did I get that? This egg shaped bruise on my forehead.

“You fell, Samantha, and hit your head. You were also sick.” Oh goodness. I thought. Why? Why did that happen?

“We had to clean your ID card.” Oh no! This gets even worse. I was sick on my ID? Defacing my card? Now what will happen. I’ll be in trouble I’m sure.

Then I remembered, it’s sunny outside, I think it’s Sunday afternoon. My memory was slowly, returning. After a few blood tests, I was discharged. How I managed to inform them of my Nan’s phone number, to tell her, all the way back in the Isle of Man, all those miles away, I will never know.

Again, I found out, the hard way, people from all walks of life have seizures, including me, they strike like lightning. Also that people will come to your aid, do the best they can to help you. It may not sometimes be a lot, but they do their best.

Later on, confused, tired and with a bump on my head, I arrived back from the hospital. When I went home to the Isle of Man, I was put on Epilim Chrono, an anti-epilepsy medication. It does not stop the seizures, but controls them. It is NOT a cure. I still have side effects. Tremors in my arms. Every day, constant vibrations. As I’m typing right now, my arms are shaking.

I had to have an EEG, (Electroencephalogram) which scans the electrical impulses in the brain, and checks the brainwave patterns. A normal person would have different patterns to one with epilepsy. Later I had a CT scan. Both concluded the one diagnosis I was expecting, and knew all along, epilepsy. I knew it would most likely be for life.

My philosophy is that you will never be free. Even if you are cleared after a few years, they are random and strike any time, any where, and sometimes, without warning. For those however, that think there is no life for you, there is.

Unfortunately, we were given this card, we were dealt it, so we must play it off. It’s life long, but we won’t let it beat us. We can do so much in life, let’s live it. If we have seizures, we will, if there’s a stigma, there is, people will gradually become more aware. I understand your anger, your aggression, sometimes being accused of dwelling on your condition. We are right to be concerned.

However, there is a life! There is work! There is enjoyment and there is pleasure! Enjoy it! Live life to the full! We’ll be okay. All of us will. You just think positively. I used to avoid people when they told me they had epilepsy, I will openly admit… Now though, ever since my two, I have become very close to those with it, and want to do everything in my power to help, to understand, and to calm them when they need it. To understand peoples’ frustration, to educate, and make people aware.

Just because we have epilepsy, does not mean we are not independent, we can do things for ourselves. You can trust us. We’re the same as you all. Just one thing that is different. The electrical activity in our brains. That’s all. If you don’t like it, please don’t mock it. If you find us hard work, tell us. We won’t be offended. How can we improve your comfort. If you feel uncomfortable, tell us how exactly. What is it? If we don’t know, we never will.

In this post, I mentioned that I was on Epilim Chrono. I have since then, switched to Tegretol Prolonged Release.I have now switched to Lamotrigine.

Samantha is a regular blogger on her awesome blog Samantha Jade Ash. You can read more of her journey there!

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