Today marks 10 years since my first experience of Status Epilepticus. I’ve never gone into a lot of detail about that night, mainly because I can’t remember most of it. However, I think it’s time to finally discuss the events that followed, so buckle up.
My life before Status Epilepticus
Before I delve into the story itself, I feel it’s important to give you a bit of context. At the time I was halfway through my first year of Sixth Form. I’d already dropped down from four subjects to two the previous term as I couldn’t cope with the workload. I’d just received my autism diagnosis about six months earlier, but hadn’t yet come to terms with it. And although I’d already transitioned from Great Ormond Street to the National, was still under paediatrics at my local hospital.
A month before, I’d gone on my first school trip abroad. It’s customary in Jewish schools for the lower sixth to visit Poland and I did. The trip was a wild mix of emotions, from the excitement of actually being allowed to go and the gratitude of feeling like I was connecting with ancestors I’d never met, to the horror and trauma of what we were all actually seeing.
On our last night in Poland, I had two seizures. For reasons unknown, my classmate with whom I was sharing a room didn’t think they were ‘bad enough’ to alert a teacher so I had to do so when we were awoken the next morning. I spent that last day in Poland walking round in sub-zero temperatures wearing just my vest and still sweating. I’d never had seizures away from my family before and that journey home was not easy.
I don’t think the trip to Poland had anything directly to do with the events that followed. All in all, it was an enjoyable and eye-opening trip. But to me, it still feels like a pinnacle moment. In a way, it was the end of life as I knew it.
The night I had Status Epilepticus
Status Epilepsticus is defined as having a seizure that lasts more than five minutes or multiple seizures without regaining consciousness in between.
10 years ago, in February 2012, I went to bed like normal and woke up confused and dazed in a hospital bed the next afternoon. My parents had called the ambulance at around 3 AM and I woke up approximately 12 hours later. The first thing my mum told me when I came round was that the paramedic had got blood all over my bedroom carpet whilst trying to insert a cannula into my convulsing arm. And then, without any deliberation, I was discharged.
This may seem like a condensed version of events but from my perspective, it really isn’t. That’s how quick it all was. No one explained to me what had happened or what to expect. They simple saw I was ‘ok’ and sent me on my way. It’s traumatic enough waking up in your own bed after a seizure. But waking up in a hospital with no real explanation as to how you got there, now that’s terrifying.
When we returned home I was too scared to go to bed. I thought if I went to sleep it would happen again. So instead, I curled up in the embryo position on the couch next to my mum. And almost immediately I started seizing again, only this time it was different…
What happened next
After my parents called 999 for the second time in 24 hours I was admitted to the hospital. I stayed there for a week and during that time I was diagnosed with Non-Epileptic Attack Disorder (NEAD). Nowadays, it’s referred to as Dissociative Seizure Disorder. However, despite liking to be very ‘proper’ with the terminology I use, I’m going to continue referring to it as NEAD as that was my diagnosis and the term that I associate with this experience.
Essentially, the main difference between NEAD and epilepsy is that instead of seizures being caused by irregular electrical activity, they’re triggered by psychological trauma and stress. The brain cannot cope with the strain it’s under, so sends incorrect signals to the body causing it to seize. However, this isn’t how my doctors explained it to me. For years I was under the assumption that I was making this happen. That for some strange reason, seizing had become a coping mechanism for me. I believed that I was doing it on purpose and so did my family.
Just like epileptic seizures, Non-Epileptic Attacks display themselves in countless ways. For me, it was eye-rolling and hip thrusting. The number of times my mum told me I was being ‘inappropriate’ when I wasn’t in control of my body was soul-destroying. I know she never meant anything by it, but it still hit hard.
In the end, it was these continuous seizures that got me kicked out of school. I needed to be under constant supervision and the school simply wasn’t willing to pay for that. This condition essentially destroyed my life and all because it was misunderstood and the support I needed wasn’t available.
How I lived with NEAD
Luckily, my FE college was much better at dealing with it than my school. Quite early on, it became clear that wheely chairs weren’t safe once I started seizing. Because my hips would thrust forward, I’d end up pushing the chair backwards and falling off of it. To solve this issue my tutors made sure there was always a legged chair in the room which I could switch to once I started feeling ‘off’. They were willing to adapt and accommodate my needs in a way school simply wasn’t and I’ll forever be grateful for that.
Unfortunately, there was one occasion when, in order to prevent me from distracting the rest of the class, they put my chair out in the hallway. Stupidly, they put it with the back against a concrete wall and I ended up slamming my head into it giving myself a minor concussion.
Around about the same time that I started college, I started seeing this condition as a ‘monster’ living in my head. I named him Craig and my classmates even helped me put together an image of what he looked like. Whilst writing this, I remembered that I actually made a vlog about Craig back in the day. And surprisingly it’s less cringy than I expected, so I have embedded it here.
But, for those who don’t want to watch four and a half minutes of nearly 18-year-old Susanna talking to a camera, I essentially explain that giving my condition a persona made it easier for me to talk about it. I made this video just before I started CBT, thinking therapy would ‘cure’ me. But it did not. At the time I was scared about what would happen when Craig went away and to be honest, nothing did.
In hindsight, I think creating that persona helped me accept that this was not my fault. By creating this little monster inside my head and giving him a name, I was able to blame the situation on someone or rather something else. At the time it was a huge part of my life and I took inspiration from these experiences and used that in a lot of my college projects.
Eventually, Craig just disappeared on his own. It was a slow and tough process, but by the time I started university in September 2014, the only thing living in my head was my dentures. And bit by bit I started to rebuild my life.
The decade since that night
As soon as I realised this year marked 10 years since those events, I started putting pressure on myself. I feel like I need to be able to look back at all of those who mistreated me during that time and say ‘screw you!’. I need to prove them wrong. I’ve never openly discussed the school I went to or the specific people who bullied and mistreated me. I’ve never named and shamed. Initially, I think this was down to confidence. When I first got kicked out of school, the local newspapers reported my story and the articles got some aggressive responses of denial.
However, ten years on, it’s simply because I know it won’t help. The headteacher who ‘expelled’ me died from a sudden illness less than six months after doing so. And whilst the community was mourning, my family and I were revelling in our newfound proof of karma. Although I know there’s a part of me that’ll never get over the trauma of what she did to me, I must admit, she’s appearing in my nightmares much less frequently now.
I have experienced Status Epilepticus at least three times since that night ten years ago. But I now have emergency medication and am far more aware of my condition and everything connected to it. I also have my VNS which helps a lot.
As I said, eventually Craig just packed up and left on his own accord. He’s only visited once since then, last month when my family and I were in a car crash. I’ve had a few moments since when I’ve felt like he’s whispering to me, but even if my NEAD does return I believe I’m better equipped to cope with it now. It is a scary prospect without a doubt. I mean the condition literally ruled my life for over two years, however, as I often say in blogs, it’s those experiences that have made me, me.
Ten years on from that night I’m definitely not where I’d have expected myself to be. I’m unemployed and fully reliant on my family for many things. But, I’ve got a BTEC, a degree, an MA and I’m on track to do everything else that that headteacher said I never would.
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