Author of Electro Girl - An inspiring journey into epilepsy awareness

When I first showed symptoms of having an electrically compromised brain, before I even knew it was compromised or even heard of the word Epilepsy, I was living with a personality that never wanted to miss out on ANYTHING. If there was ever anything going on socially, I needed to be there!! Even if there wasn’t anything going on socially, I’d invent something and gather people together so that there miraculously WAS a party happening.

My star sign is a Gemini and I have been told that I am 100% aligned with the personality traits of the twin sign. Two sides to my personality, the socialite who is always up for fun, adventure and communicating whether it be man or beast and then at any moment the other personality can kick in that is restless, indecisive and feeling “caged in” so I make plans to exit the situation sometimes with no warning to my nearest and dearest who are left wondering ‘where did she go’.

In general, living with a socialite, extrovert kind of personality is exciting but extremely exhausting because you feel in the depths of your being that you have to be everywhere and anywhere and always ON! I have loved it though, it suited me perfectly to be like this, until that I, when I got diagnosed with epilepsy at 19. What I came to realise over time is that the “party personality” didn’t quite suit the Epilepsy, so when I was diagnosed and handed the news that I would have to reign in my party ways because of my compromised brain I was put in a situation where I felt like it was the parties or the Epilepsy that had to go.

I thought about it for a while and came to the conclusion at 19 that is was the Epilepsy that had to bugger off. See ya, don’t want you in my life, what even is Epilepsy? I’ll just keep on being everywhere and anywhere and I’ll deal with the consequences of my choices in the morning. This is an important point in the life of anyone who burns the candle at both ends because whether you have epilepsy or not, our bodies and brains are all susceptible the next day to the choices we made the night before. For some it’s a simple dry mouth and hangover, for others it could be a migraine so powerful it puts you on the couch all day and for me, well, it could result in a 4-5 minute grand mal seizure which my body and brain will suffer for, for the rest of the day.

In saying this, not every time I decided to go to a party or social event when I was in my twenties and thirties and had a drink or indulged in recreational drugs did it end in a grand mal seizure in the morning, but the “threat” was always there for my brain to decide if it was going to jack-knife on me because I had deprived it of way too much oxygen and carbon dioxide the night before.

This sort of personality has an Acronym that some of you might be aware of called FOMO (fear of missing out) attached to it and I am still, kind of, under its spell. I am 45 now and not seduced by every social event like I used to be but still, the FOMO call has its seductive arms wrapped around my vulnerable and easily swayed psyche.

Having lived with a seizure condition for 26 years now, I can never really say that I have full confidence in what my brain will do at any given time as it is an electrical organ which relies on so many factors in order for it to work properly, but I have way more confidence in myself and invest an incredible amount of personal responsibility in my decisions including how I educate people around me so that if the wiring were to go a bit cray cray I would at least be safe and they wouldn’t end up in a foetal position scared shitless in a corner.

So as far as the FOMO personality these days, I still go out, that will never change, but my decisions where to go out and what I do when I’m out are based very much on a few key factors:

  • If I need to extract myself and lie down will there be a space for me to do this so that I am away from people in case a Grand Mal seizure starts
  • Will I be with people who have my back just in case I need my homies to look after me
  • Have I cleared the morning calendar! This is because my seizures 99% of the time happen in the morning when I wake up. If I have gone out night before and I wake up and my brain isn’t wiring so well, I have no pressure to be anywhere or do anything
  • Know when enough is enough and I don’t keep having another drink or staying out later if I can feel that I am tired. Now I just pull the pin and go home. I call this a move to self-love!

In summary, when other people put limitations on what I could do out of their own fears for me, I rebelled. When I got to know myself and put my own limitations on myself that were right for me I could accept everything so much easier.

Later FOMO’s

Love Lainie