How Everything Has Changed Since I Had a Seizure in the Grocery Store

More than three years into my seizure disorder, I didn’t think that much could scare me anymore. I’ve dealt with most things, I thought – a loss of dignity, independence and the life I wanted – so surely not a lot can shake me anymore to do with this illness. I was naïve, so so naïve. On July 22, 2017, I proved myself wrong – so wrong it hurts.

 

There’s a bad smell, so bad it’s sickening. I’m the only one who can smell it. Next aisle down, I freeze, in both senses of the word. I have a cardigan on but it’s like I’m standing in my underwear in the Antarctic, as still as slap in the face. “Mum…” and I’m gone. Only the second time I’ve ever fallen in a seizure. Luckily, I started seizing standing up before my knees buckled, and my mum and sister were there to guide me down. I say luckily, but luckily would be walking out of that supermarket, healthy and with our shopping in tow without an issue.

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40 long minutes in status epilepticus. Three ambulances ended up in attendance. All crew members but the three driving were in the back of the truck that transferred me. There were so many people that my sister had to sit up front with the tech who was driving. My mum followed behind in our car so they weren’t stranded at the hospital later that night.

Blue lights and sirens, nasal airways and rescue medications – I don’t even remember the faces of my saviors. I don’t remember the face of the off-duty ambulance technician, who skidded round the end of the aisle, with his milk in his hand, when a call for a first aider went out on the tannoy, who lay next to me on that cold, polished floor next to the cheese and cold meats, who tried his best to comfort me when my down time reached 10 and then 20 minutes. I don’t remember the voices of the off-duty nurse or the supermarket duty manager, who argued over whether the baby blanket, taken from the shelves a few aisles down to keep me warm, was to be paid for or gifted from the supermarket. I don’t remember the cheek of the shopper who ignored aisle blockades to ask the staff directions to the semi-skimmed. My memory of the resuscitation room team at the hospital is hazy. I recall a male and female nurse and a female nurse in training who wasn’t much use in placing ECG stickers, but ask me to describe them or think of their names and I’m useless.

I remember only one nurse clearly from later that night. She was manning the night shift in the main accident and emergency department and spent most of her time opposite my high dependency bay at the nurse’s station or in it beside me. She was warm and comforting and reassuring. Her face and voice will forever be imprinted on my brain. Her name, on the other hand, slips my mind, unfortunately, but knowing how much I end up there, I’m bound to come across her again.

11 days later, two EEGs and double figures of rotating fellow inmates, there’s not a nurse on the ward I do not know. Home is welcoming but somewhere that scares me more than most. The fresh air hits my face for the first time and I feel free. But I’m far from free, I’m trapped in the wrath of my body and mind. All that’s happened is there are now bars instead of glass, danger instead of security, a ticking time-bomb in my head.

Going home is terrifying because now everything is different. Everything is dangerous. I don’t always have the warning to make myself remotely safe and I don’t always stop seizing on my own. On my own, I could end up brain damaged or worse – if that wouldn’t scare someone, then I don’t know what would. I don’t want to be on my own.

Sleeping scares me but I know if I don’t I’m more likely to be ill during the day. So, I go to sleep on tender hooks, praying with all my might I wake again in the morning. Nobody should have to go to sleep hoping they will wake up again, but I do and I know I’m not the only one (not that that’s comforting to me in any way, because it isn’t, at all).

Walking up and down the stairs worries me, as does handling a kettle or a knife – the latter of which I have managed to avoid at all costs so far, thank goodness. As the days start to pass, I begin to try my best to file these worries and concerns at the back of my mind; after all, I can’t hide away from these things, neither can I try to avoid them. My filing cabinet’s “worries” section is ever-growing as I subconsciously risk assess my every move. I know I’ll begin to relax soon enough, I always do, but I know also that this time round, things aren’t going to be as easy as before.

But that’s OK, I guess. All of this is OK. It’s natural and I’m not the only one going through all of this. I may not be OK, but that is OK. My life is changing for the billionth time. This time I didn’t see it coming, but I know it won’t be the last time it does. After all, the world is forever changing.

So, as I’m living on tender hooks, a new memory scarring my mind, I can only hope the next change is just around the corner and remember “nulla è per sempre” – nothing is forever.

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Thinkstock photo via Makidotvn.