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This article was published in April 2013. The information may be out of date. Please check our epilepsy information or our site A-Z.

Good girl growing: turning a corner that was a U-bend

10 Apr 2013

Susanna Fantoni - headshotSusanna Fantoni is a young woman with epilepsy poised on the brink of adulthood. In a new regular column, she describes life with several medical conditions and the daunting transition into the curious world of adults

On a Monday morning last September I started college. I’d planned to have my picture taken outside the front door: bag over my shoulder, lanyard round my neck, looking smart and with a big grin. The plan was to upload it to Facebook with the caption: ‘First day at college – can’t believe I’m so grown up!’ That was partly to take the mickey out of all the mothers who had done the same with their four-year-olds a week before. I suppose it was also partly to continue my fight against adulthood!

Unfortunately, Monday didn’t quite pan out that way. I spent Sunday night literally twisting and turning in bed. By Monday morning I was half asleep and rushing just to be on time. The day itself went well, although it was all a bit of a blur at the end of the day. I think that was due to the curious kind of exhaustion you get just from sitting and waiting.

The next day, however, was slightly different. We were shown a bit more of the college and further information about the media course I am now studying. This, of course, made the day more interesting. I also spent lunchtime with one particular boy who I’m becoming quite friendly with. After that it all went a bit pear-shaped (which is an unfortunate turn of phrase, as I like pears). You see, the two conditions I’m living with that I feel least in control of at the moment both struck at the same time.

Susanna presenting a show during 2010's Epilepsy Action Radio DayI had what I’d call an ‘attack’. If you’d rather I was more scientific, I had a non-epileptic seizure. It was alright… I kept my eyes forward but, as a result, I lost my legs – and fell. I’ve asked the college to step back a bit and let me be when this happens. That’s generally what I prefer. But they did what I’d asked – and no one rushed to my aid. That was when my Asperger syndrome kicked in – and told me this was all wrong.

Over the previous year, my school had taken a very ‘hands-on’ approach to these events. They were constantly eagle-eyeing me. If anything happened, someone would grab me and (in only a slightly less abrupt manner) just stuff me in a locked, glass room. Okay, I must admit that it wasn’t quite as blunt as that. They would guide me towards the waiting area outside the main office, which just happens to have wide glass double doors at either end (used to enter and exit the school). I suppose it always felt a lot worse than it was – especially seeing as I never had any choice in the matter or any form of escape.

Needless to say, I disagreed with this form of action. Unfortunately, it just became the way it was done. Now, that’s a slight problem because of my Asperger syndrome. If my brain thinks ‘this is the way something is meant to be done’ I have to do it that way, no matter what. I subconsciously started taking the longer route through the centre of the school purely so that the staff could see me. I started feeling as if I was being watched all the time.

Because of this need for things to be done ‘correctly’ I was left feeling a bit lost on that day in my first week at college. I had an attack, yet no one was checking up on me. It felt wrong and slightly knocked my confidence.

I had already told my new friend about the (I don’t want to write it – pause and gulp) epilepsy. He noticed something was up and asked what going on. When I told him he obviously gathered that I wanted some space, but… I kind of got too much. The road was too open. I was too free. It was too much of a change too quickly.

I realised at that moment that I couldn’t completely cope. At least – I couldn’t cope yet.

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