This post is part of the Epilepsy Blog Relay™, which will run from Nov. 1 to Nov. 30, 2017. Follow along!
Hiding, embarrassment and isolation are things we get used to feeling and doing when we are dealing day to day with the realities of living with a sparky brain. It’s not the same for everyone though as all of us that are afflicted by epilepsy, have our own degrees of feelings surrounding these things. In my case, I let two of these things overpower me and convinced myself that hiding and being embarrassed was the best solution to adopt in order for me to just blend in with the crowd and be “normal”.
What I didn’t take into account was, that by hiding myself, my seizures and my feelings about what I was going through, I was adding to the problem we face in society around the lack of education amongst the general public about what to do and more often than not, what not to do when you are dealing with someone that has seizures.
I honestly never thought I would be as vocal as I am now about my story but I guess that’s what happens when you write an autobiography and decide to publish it for the whole world to find out about you at the push of a “BUY NOW” button. It has been the most cathartic experience and one that is going to journey far beyond the book. In fact the book now is more like a business card. I am in the middle of writing a comedy show in Australia for one of the biggest comedy festivals in the world, The Melbourne International Comedy Festival where I will bring light, humour, depth and understanding to my story about living a symbiotic existence with epilepsy, to the audience.
I have even scripted in to do an interpretive seizure dance to music, OMFG that is going to be interesting!!! A friend is making the music and it will just be placed in to the show to illustrate from aura to reconnection afterwards that even though it’s dramatic and scary at the time, we just need time and space for our brains to reconnect and rewire again and after some rest we are back on our feet. Fear will only make it worse for the onlooker and of course us!
The hiding is over, I still deal with the embarrassment and self-worth stuff but that is all me creating that, not the public. My decision to educate instead of hide has been a long time coming but now, through humour and book talks, I am so happy that I will be contributing to the greater good of the community to relieve some of the stigmas.
I might add, my view of Epilepsy and managing it isn’t as mainstream as some and I have kicked the fear to the curb so that I can replace it with alternative ways of treating and managing it in order that I can be on the least amount of meds that I need to be on and replacing that modality with diet, reducing inflammation and exercise.
Sadly in Australia we are so far behind on the medical marijuana trail that it’s embarrassing. It’s not legal yet here sadly
Anyway, I’m proud to be another voice and face of education for us all
Lainie aka Electro Girl
For the full schedule of bloggers participating in the Epilepsy Blog Relay™ visit livingwellwithepilepsy.com.
TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET.