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Living with epilepsy

Ahead of Purple Day this Sunday 26 March, RNLI Data Support Assistant Olivia Abengowe-Robertson shares her experience of living with epilepsy – and calls on all RNLI volunteers and staff to improve their awareness of the condition.

Purple ribbon and text reading 'One crew, one you: Epilepsy Awarenss Day 26 March'

Photo: Shutterstock/RNLI

This article contains references to bereavement and traumatic experiences that some may find distressing. You can find out more about support available within the RNLI and beyond on the Wellbeing page.

What is epilepsy?

Let’s skip the science side of things as it is easier to research on your own. A few minutes on the Epilepsy Society or Epilepsy Action website will enlighten you, but I’m choosing to speak as if I was speaking to a friend. It’s less triggering for me and I want to tell my story, not give a lecture. Before going any further, I would also like to mention that there are many changes being made as to how we phrase things.

  • Don't say fits, say seizures.
  • Don't say ‘grand mal’ or ‘petit mal’, say ‘tonic-clonic’, ‘atonic’ or ‘absences’.
  • Some people prefer the word ‘aura’ instead of ‘warning’ when describing the sensation they feel before a seizure.
  • Avoid referring to a person as ‘an epileptic’, instead say ‘person with epilepsy’.

I come from a generation when ‘epileptics’ was used happily as a term, and I know for a fact that many medical practitioners still struggle with the change. I am happy with being called epileptic, but I am aware that language has changed. I am sure people will let you know their preferences, but I thought I'd start by letting you know because I will refer to myself as an epileptic throughout this piece.

‘Who has it best?’

Everybody has electrical waves in their brains – they sort of look like spikes on a brain scan. When you're epileptic, these spikes are a lot sharper, a lot more sensitive. Pretty much anything can ‘trigger’ an epileptic seizure, causing those waves to spike and increase the electric activity in the brain that our bodies cannot handle. You could be in the same room as me and I would have a seizure triggered by something that your brain could handle, but mine decided to throw a rave instead. However, it’s important to understand that triggers can be different for everyone, and not all people with epilepsy will even have seizure triggers.

Some types of seizures don’t have warnings (an aura). Amongst people with epilepsy there is a huge debate around who has it best. Literally, we say that... who has it best? Those with warnings or those without? Would you want to go a whole day or even a week knowing one is coming, but not when, or would you just rather wake up to snapping fingers or your name being yelled at you? (By the way, this is super annoying and can cause people to become aggressive.)

Is it easier to know the pain that is coming and try to prevent major bodily harm? Or is it easier to wake up to pure agony and assess how much damage you have caused this time? The fact is, no matter what type you have you will be in excruciating pain after and will continue to be for over 6 hours – all the while knowing you’ve just had a little more damage done to your brain.

Epilepsy can physically present itself in different ways. You've got what everybody tends to think epilepsy is, known as tonic-clonic seizures (falling on the floor and seizing) but there are lots of different types, one of the most common being the absence seizure. There are more types than I can describe here. Despite having epilepsy all my life, even I’m not familiar with all of them. Getting diagnosed with epilepsy can be challenging and many people go multiple scans and several years before being diagnosed.

What people often don’t know is that one-off, random seizures can happen to absolutely anyone. It doesn't matter how healthy you are. Having a seizure doesn’t necessarily mean that you’re epileptic; seizures can be brought on by things like fevers and brain injuries, but also drugs and alcohol. For that reason, if an epileptic person has a seizure in public, they may face stigma and not get the help they need.

General awareness of epilepsy and what to do if you see someone having a seizure is not great. That’s why I want to share my story with the RNLI. If more people knew about epilepsy, it could help others understand us. It might help shed a brighter light on this invisible illness.

‘My childhood was forcefully taken from me’

I’ve been epileptic since birth. I have genetic epilepsy, but not the genetic you may be thinking. Think gene mutation (no, I'm not a mutant – how cool would that be, though?). At some point during the creation of a person's genetic make-up, mine... well, mine went wrong is the easiest way to put it, so that obviously can’t be seen on a scan. Testing my blood through my mother's blood wouldn’t have given any hints either.

My childhood and much of my adult life has involved a lot of trial and error with medication. I’ve been on every ASD (anti-seizure medication) apart from two recently introduced drugs.

I think I was 9 when I lost all my hair thanks to an ASD – I've got a lot of hair by the way, and it literally just fell out within a week. Another drug made me put on tons of weight. With another I could not hold down any food. Funnily enough quite a few of them caused my seizures to get worse. And triggered insomnia.

At one point, it was thought I would be a candidate for brain surgery. Unfortunately, I had a seizure while on the operating table, where it became obvious that I have generalised seizures – which means the whole brain is affected. The surgery had to be stopped immediately to prevent further damage.

I remember waking up in a room, with beeping going on all around me. My mom was talking to me, and all I was thinking: ‘Who are you?’  Turns out I’d been in a coma for 6 and a half weeks. I came out of it and didn't know anybody. I knew the people around me were doctors but had no clue who the people looking at me with concern and fear were (my family).

Not only did I have to deal with the trauma of realising that the surgery hadn’t been successful and my epilepsy was now also inoperable, I also had to be gradually reintroduced to my own family. It was an awful time.

One day my sister was trying to help me get out of bed and she said: ‘Olivia, let go of your leg. Just hold me or you will fall.’ And out of frustration I yelled: ‘Oh my God, Vita, stop fussing over me!’ Just like that my memories came back – and wow did they come back. It felt like someone was inside my head with a jackhammer. I was holding my head in my hands and screaming; I had to be sedated. When I came to, I knew who everybody was, and that was scary too. It was a crazy, painful brain dump. I then had to go through a memory recovery, which was when we discovered that my childhood was gone... my childhood was forcefully taken from me.

Even now, I don’t remember anything from under the age of 7 – it's just a black hole. Epilepsy stole my childhood.

I do like to hear stories about my childhood and what I was like, but sometimes it's hurtful because I wish I could remember it myself.

‘For 5 years, I pretty much battled epilepsy alone’

I had more battles to face as I grew up. One tough pill to swallow was losing my friend and fellow epileptic to SUDEP (sudden unexpected death in epilepsy). I flew out to the USA for the funeral and that’s when it really hit me that SUDEP is all too real and cruel. You have a seizure and you simply never come back from it. Katie was only 20 – she hadn’t had a seizure in 10 years, she went out to celebrate getting engaged... it was Valentine's Day. That’s how cruel epilepsy can be, and yet not much is known about it. Our stories are not being heard.

I spent some of my youth attending a private Catholic boarding school in Nigeria. Unknown to my parents, it was not a safe place for someone who’s epileptic. Even in the 21st century, in Africa there is widespread fear and misunderstanding of people with epilepsy. The first time that it was my turn to recite morning prayers in front of the girl's dorm, I had a seizure – the absolute worst time for that to happen. I was then treated like I was possessed.

My father was notified by one of the teachers about what was going on. She feared for my life, just as they feared that I was a demon/possessed/a witch. The abuse and neglect I experienced after that incident eventually led to the school being closed by my father. The memories of the dark rooms are nightmares that I often face.

Years later, after spending some time in Germany and the USA, I came to be living on my own in Brighton. I turned into a bit of a rebel and basically cut off contact with everyone for the sake of their sanity. For 5 years, I pretty much battled epilepsy alone with only the help of medical professionals to patch me up and send me back out.

I went to college and got my A-levels. I started at Sussex University but dropped out because I couldn't physically cope. I tried to work but kept getting fired because my epilepsy meant I was only able to attend maybe 1 week out of 3. I eventually returned to university, but this time I attended Open University and got my Master's in child psychology.

It was only when I worked with a neurologist in Brighton who insisted I persevered with a drug called Keppra that eventually my seizures began to be controlled. At one point I was even having five or six seizures a day while on this drug, but my neurologist could see from my brain scans that it was slowly starting to make a difference.

Although Keppra did the job, there is a reason the drug has the nickname KeppRAGE; the most common side effect being uncontrollable rage. I would completely lose it, no reason whatsoever. The drug that was meant to help me was changing me as a person. Imagine not being in control of your own body and mind. I became a shell of the real me, and then the rage stopped and I didn’t know what to do. So I just kept living – I felt a bit like a fraud because I was pretending to be someone I was not.

I didn’t even notice when the seizures stopped! Then I had to go through the whole process of recovery, both physical and mental (surgery and therapy). Gaining medical control of the epilepsy is not the end of it. You then have to deal with the emotional consequences. I was living in constant fear, thinking: ‘This can't be real. I’ve been seizing my entire life, what's going on?’ For about a month I couldn't function. I couldn't leave the house because I was tormented by the potential consequences of having – or not having – a seizure.

Through the support of my epilepsy nurse, I slowly started coming out the other side. She set me up with an epilepsy group in Brighton, and I became an ambassador for them, telling my story at conferences. This helped me build myself back up and I became who I was before all the rage began.

Whilst doing that I was learning a lot about epilepsy in general, which was when I started to see how little awareness there was. Even though I had suffered for so long, there was so much more to epilepsy that I did not know. I would often sit with my laptop, researching, reading stories from survivors. I was struck by a feeling that there were very few people speaking for us and those of us who spoke were not being heard.

That’s why Purple Day, this Sunday 26 March, means so much to me. This, and the experience of becoming a mother, have inspired me to raise as much awareness as I can for a better future.

‘How am I going to forgive myself if she's epileptic?’

When you have epilepsy, you question your life so much. This was especially true for me when I decided to have a baby. From medication, to giving birth, to breastfeeding, to mental health, to the re-balancing of hormones – there are a lot of additional considerations for someone who’s epileptic.

I had to have more scans than the average pregnant woman. My medication had to be altered in my third trimester due to my metabolism going up a few notches. I was made aware of what painkillers I could have during labour, and which were a complete no-go. I had to sign off on things no mother to be should have to sign off on. My already fragile mental health was put to the test, too.

When my daughter was born, I remember she was maybe 6 hours old and I was looking at this tiny human, who I was now fully responsible for, completely innocent and new and fresh to the world. Her slow deliberate movements, her cute frown (she was not pleased that she had been yanked out; I had an emergency C-section). And all I could think was: ‘How am I going to do this? What if she's epileptic? How am I going to forgive myself if she's epileptic? What have I done?’

I then had to go through watching this brand-new human detox the medication that I take religiously and took throughout my pregnancy to keep her safe. When I say detox, I mean she was shivering and sweating and would have these massive jerks – which felt like a preview into my worst nightmare.

She is the main reason I have decided to tell you part of my story. Her name is Haven. I chose this name because I felt that no matter how bad things could get, knowing she is here keeps me going... she is my safe Haven.

Now the question is, what can I do to help her if she is epileptic? Or if her future bestie, a neighbour, or a stranger suffers from epilepsy? How can I tell her what to do without setting an example myself? Something I know I can do is work to make the world a little bit more aware of epilepsy.

We've always got hope for a cure, but as it stands, all we can do is hope to control/reduce its activity. Meanwhile we fight. We fight for what we want, what we need and what we crave – a life free of epilepsy. I feel the least I can do is raise as much awareness as possible. So, after a little break, I am back at it again... this time starting here, with you.

Help us fight this, be our cheerleaders, be the person at the finish line with a bottle of water.

Bravery to face the world with your realness shining through, having the integrity to stand up for what you believe in, and possessing the inner power to be able to take risks, to fail and try again, and most of all, the inner power to succeed because sometimes success is even scarier than failure.

We are warriors! Some battles we win and some we may lose but, you can be sure we will never stop fighting.

We are not Epilepsy Fighters, but Epilepsy Warriors.

#FightToLive #HopeForACure #EpilepsyAwareness #WeBendButWeDon’tBreak

– Olivia 

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