Seized: A Story I Don’t Often Share

I attended Britmums Live, my first blogging conference, this weekend. It was a great, if a little overwhelming! experience. I met some lovely people and came away feeling inspired. I’m not sure I can add much to the many great posts already out there about the event, however I am feeling ready to share this story today. My motivation is partly from hearing the very inspiring Katie Piper talking about how how you make your own life and choose how to react to the events and experiences that shape you – which definitely struck a chord. I was also prompted by the very amusing Katy Hill, who pointed out what a bunch of over-sharers bloggers are. It occurred to me that sometimes I’m happy to over-share the unimportant minutiae – like the state of my bikini line – whilst keeping some of the things that are really important to me, and about me, locked away.

Today, I’m choosing to share something which has had a big impact on my adult life. This is also another post in what I hope will become an ongoing series about “Me, Before Motherhood”.

One day in November 1999, as a 19 year old who’’d just begun my second year of university, I woke up in Accident and Emergency with the mother of all headaches. I’m fairly certain that had I rolled over and pulled the duvet over my head that morning, as I desperately wanted to do, I would have faced a different outcome. If I had not sought help, by the time a flat mate had found me in my bed that evening, I’d possibly already have been dead. Claimed by meningitis.

I came through to the other side, obviously, although it was a rough road. But I can’t claim that I came through unchanged.

Meningitis left an indelible scar on me that mostly remains completely hidden, but had the ability to rear it’s ugly head unbidden, and make itself known to all around me.

The scar is the ongoing tendency to experience seizures.

Or, in other words, epilepsy.

Epilepsy, to me, is a beast that tore its way through my twenties, turning life and relationships upside down. It took away my driving licence and threatened to take away my career plans. I struggled to get it under control, then struggled to deal with the emotional fall out and learning who my true friends were. Finally I fought, incredibly hard, to be allowed to continue to complete my degree and enter my chosen profession.

I’m not ashamed of epilepsy because, much like diabetes, it’s not something that I can help. I did not choose this. But it’s not something I’m particularly proud of or open about either. And that is mainly because of the incredibly narrow minded attitudes and prejudice that persist in society today, which have repeatedly both astonished and appalled me. Whilst I have no doubt that it was the countless supportive people who really got me through the tough times after my diagnosis, it was equally the many cruel, thoughtless people who nearly finished me off. Sadly epilepsy still carries a great stigma.

I know the only way to change this is to talk about it, but, perhaps selfishly, my focus has always had to be on protecting myself and my career.

Since I’m talking about it now, though, I’d like you to know that epilepsy doesn’t have to mean an end to normal life. I’m extremely fortunate that my epilepsy is now fully controlled, although I am unlikely to be able to ever come off medication (I have tried, with disastrous consequences). My seizures are preceded by an aura, or warning, and these two facts allow me to work and participate in activities in the same way as anyone else. I don’t pose a danger to myself or to anyone else as a result of this condition.

If I could choose, of course I wouldn’t choose epilepsy. But I do recognise the things it has given me. It increased my (already not inconsiderable) tenacity and determination. It’s taught me that you can change attitudes and you can be successful even in the face of seemingly insurmountable obstacles. It’s also taught me a lot about people and saved me from relationships with people who’ve shown their true colours when it was introduced.

I learned first hand that the problem, as always, truly belongs to those people and not to me. Because I’m doing just fine with my life and my beautiful, happy family.


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