As National Epilepsy Week gets underway, Jen Brown tells Standard Issue how, since her first seizure as a teenager, she has fought to find the fun amongst the fits.
It was my first one in over 30 years so I was determined to make it a biggie. I was coming off tablets after my GP informed me I was on such a low dose they couldn’t possibly be controlling my fits.
With no further ado, I weaned myself off the meds and gave an inward cheer at the prospect of unwanted side effects disappearing forever. Bye bye to thickening of the gums, droopy eyebrows and heaviness of the features. It seemed it was not sufficient I be prone to flinging myself on the deck, doing funky moves. A heavy face had to be added to the mix as well. Grand!
I was diagnosed with epilepsy when I was 14 and took my first seizure while watching a royal wedding at my cousin’s house (Angus Ogilvy and Princess Alexandra, I believe).
The warning or aura preceding my seizures took the form of panic and I usually made a run for it, ending up on the floor, halfway down the stairs or occasionally on the street. More often than not, though, someone would catch me and hold me until I went down. Some lucky folk have much more manageable auras like a strange smell. I always wanted that sort and envied those ‘Bisto Kids’ who cried, “Aaah seizure!”, then dropped. Far safer.
“My daughter was only three when I took a fit in the night and she had to phone my parents to inform them her mammy was on the floor gyrating and the lamp had fallen off the bedside table.”
It was great news when I was told my meds were doing nothing at all and I was no longer an epileptic, but it turned out I really needed those pills because only a few weeks after coming off them, I found myself in an ambulance, in a foreign country (well, America), staring into the eyes of a total stranger.
He had efficiently strapped me onto a bed and was administering whatever he thought it was I needed. In my mind, I was captive in a van, with dear knows who. I studied the strange man’s face. It seemed kind enough. Maybe I wasn’t going to be murdered after all (I watch too many episodes of Forensic Files).
Upon arrival at hospital, I remained fearful and confused but from nowhere I heard my mam say: “Don’t worry, pet, it’ll come to you.”
She always said that. My daughter arrived soon after my admission and I knew who she was! My first thought was to get in touch with my mother and let her know I was doing OK but something was niggling at me. I asked with trepidation: “Max, did your Nanna die?” My daughter’s face crumpled. I had forgotten.
Someone told me that after a seizure the brain is akin to an upturned filing cabinet. The papers are still there but in the wrong order. I waited for my ‘filing clerk’ to get cracking. I knew eventually it would ‘come to me’.
This week is National Epilepsy Week so I thought it would be an ideal time to share some of the ‘come to me/you’ moments I have experienced over the years. A memory lapse by definition (to me) is hilarious anyway, and indeed trying to retrieve information as to what happened pre-fit and my reaction to what I had ‘forgotten’ post-fit was often hysterical.
One occasion that remains vivid for me is when I had a good night out with a friend. I’d recently split from my husband and was set to have a good girlie night on the lash. It was the weekend and we had a skinful. It was the ‘70s in the days when pink sick was synonymous with Cherry B, cider and a bloody good night.
“Someone told me that after a seizure the brain is akin to an upturned filing cabinet. The papers are still there but in the wrong order.”
The morning after brought me a blinder of a seizure and I came to, wearing my usual blank expression. I peered at the person in front of me and whimpered my husband’s name (we’ll call him Ben, for decency’s sake). I wandered from room to room, looking for him. My friend, who was starting to look familiar by now, had a look of sheer dread on her face.
She didn’t know how to tell me I was no longer spliced. The conversation went something like this:
Me: Ben? Ben? Where’s Ben?!
Friend: He’s not here.
Me: Where is he?
Me: Have you seen him?! Is he at the shops?
Friend: (quickly) You’ve split up.
Friend: You’ve separated.
(Loud wail from me)
Friend: No, it’s alright! You’re glad.
Me: Am I? Are you sure?
Friend: Yeah, we had a brilliant night. You scored.
And so I had! It came back to me. Within an hour I recalled the details of my estrangement and it was all good.
Another raucous night with the lasses and this time I was staying over at my mam’s. Post-seizure, I politely enquired about the carry cot in the corner of the living room and more to the point the identity of said teeny person therein.
Mam: (cooing) It’s the baby!
Me: (high pitched) Baby?
Mam: Yes, it’s Maxine!
Mam: She’s been no bother!
Me: Who did you say it was? (big sob) When did this happen?
Mam: Eight weeks ago! Don’t worry, pet, it’ll come to you!
And it did!
My daughter was only three when I took a fit in the night and she had to phone my parents to inform them her mammy was on the floor gyrating and the lamp had fallen off the bedside table. (No, it wasn’t another girlie night.)
My dad jumped into his fish wagon, a perk from his job on North Shields Quay, drove to my rescue and under Mam’s instructions stayed till morning to make sure I was OK.
“I was tempted to consult Philippa Perry, my go-to psychologist, to ask how seizures cause the memory to lapse so severely, but I was worried she might say it was the drink, so I didn’t bother.”
Imagine this: me, coming round to find an older man sound asleep next to me; smelling vaguely of baked herring into the bargain. Who was this? Where had I been?! My dad awoke in a state of shock to find himself suspended above my head, as I lifted him bodily from the bed – as easy as Popeye lifting Olive Oyl. He said he’d never known such strength.
It was a while before I realised this fishy bloke was my dad and was there to take care of me.
These days, I keep my paperwork in much better order and strive to maintain an upright filing cabinet. In the writing of this piece, I was tempted to consult Philippa Perry, my go-to psychologist, (and Standard Issue writer), to ask how seizures cause the memory to lapse so severely, but I was worried she might say it was the drink, so I didn’t bother.
Being epileptic has afforded me many laughs and trillions of tales to tell. If this article helps cheer only one of the nation’s 600,000 epileptics, I will be delighted.
National Epilepsy Week runs from 17–24 May. For more information and support, visit www.epilepsy.org.uk3531 Views
A Hollywood based Geordie pensioner living on her wits. Affectionately known as Nano to her granddaughters. Instantly likeable. (Daughter's words!) @MmePcato