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Sunshine on the window: The butterfly effect

25 May 2017

Jasmine Forrest is a 25-year-old journalism student from Manchester. Throughout the years following her epilepsy diagnosis at age 17, she has experienced many highs and lows when dealing with (and accepting) her condition. Eight years on, she has decided to speak out about her feelings, thoughts and experiences as a young woman with epilepsy through her blog: Sunshine on the window. 

 

The butterfly effect

Every one of my family members and friends can confirm that I habitually wear the wings of a social butterfly. Whether at a bar with friends and glass of white wine in hand, or in a study group with pencil in hand, I thrive within various social environments. I feel most comfortable when surrounded by others. Except in the lead-up to a seizure when I am nothing like this.

I have tonic-clonic seizures and before each comes a strange prelude that can start anywhere up to eight hours before the seizure itself. It is a time where I am no longer Little Miss Chatterbox and instead I become Little Miss Scatterbrain. In this bizarre state of mind, I lose all initiative and coherence, adopting an almost autopilot mode. The saying ‘lights are on but no one’s home’ applies perfectly to me in this state of mind. The usual confident, loud and intuitive Jasmine becomes unusually reserved, incoherent and distant.

In these ‘funny spells’, as I have affectionately named them, I am still physically able to function – so much so that I can even play board games, albeit not very well! My two best friends, while playing Cluedo with me, witnessed me having a seizure for the first time. Shortly after setting up the board and claiming Miss Scarlett (who else?!), I fell backwards and had a small seizure. Coming round from it, I was apparently adamant on continuing to play the game and demanded my friends let me play. My attempts at navigating Miss Scarlett around the board when it was my turn were laughable, moving her aimlessly anywhere and everywhere. Picking up the wrong game pieces in confusion is the last thing I remember, and – ta-da! I had another seizure, much bigger this time. I guess I wasn’t destined to win that game!

The conflict of losing control of myself hit me hardest when coming around from the larger, second seizure. A plethora of screeches and wails were all my friends heard next as I was apparently inconsolably upset and confused, not knowing where I was or how I got there. After a big sleep in a bed of plumped pillows I awoke refreshed and the ‘normal Jasmine’ finally emerged in full glory. As inquisitive as ever, I presented my two friends with a list of pre-prepared questions: “What happened exactly? Did I do anything embarrassing? What did I look like? Did I pee myself?” As they perched on the end of my bed, they both commented they were taken aback at how different I was the night before. They were intrigued by the change in my personality. But it felt like a light-hearted chat with them, as we all proceeded to make a few jokes here and there. “You were quiet…for once!”, they quipped. “I was so out of it I didn’t even take up the opportunity to raid your fridge like I normally do,” I answered.

With so many types of epilepsy and seizures, loss of control is the terror present within every seizure. Becoming ‘that person’ against my will is something I consistently struggle to accept. The light-hearted conversations with my friends and family following my seizures bring me light and help bridge the segregation between the ‘normal me’ and the ‘pre-seizure me’. Maintaining a sense of humour while acknowledging the gravity and realness of the condition has allowed me to be able to put my social butterfly wings back on with much more ease. Although it is still a work in progress. And one thing that is sure to make me feel like myself is that long-awaited Cluedo rematch.

 

The opinions of authors do not necessarily reflect the views of the charity, nor does the inclusion of an item constitute a recommendation.

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