My Journey with Epilepsy

My Journey With Epilepsy

by

Nate Simmons

My journey with epilepsy has been a relatively short one, yet my condition has put me through some of the most emotionally and physically challenging times of my life so far. I was diagnosed in the summer of 2012 and all I remember feeling at the time was confusion. I admit, with some shame, that prior to my diagnosis I knew little to nothing about epilepsy, so I was thrown in the deep end with this entire experience. So after I got home from the hospital, I did all the research I possibly could on epilepsy and everything to do with epilepsy and seizures. What I discovered really shocked me. I had no idea that epilepsy affected so many people and in so many ways. My dad came home from work and he said something to me that changed my entire view on my condition, and in extension my life, he said “Epilepsy will only affect your life if you let it.” So I took those words to heart and I refused to let epilepsy or anything else affect the way I live my life. After my diagnosis I continued with my hobbies and started a few new ones, including my dancing which has got quite successful if I may say so myself.

About a year after being diagnosed, I looked back on my diagnosis and thought about how little I knew about epilepsy and how difficult it was to get a personal outlook on some of the more day to day questions about epilepsy. It was easy to get information on the medical side but the day to day, more personal side? Whole different ball game. So I spoke with my best friend Dhruv and together we made a Youtube channel called Epilepsy QndA where the idea was that people would send us questions and we would answer them with a message back, if we thought that question could be asked by more people we talked about it in the next video. I also got speaking to multiple people, such as the Epilepsy Awareness Squad, on sites like Twitter and Facebook. Some of their stories amazed me and I was eager to help in any way I could. One day I was asked by the charity Young Epilepsy to talk about my life with epilepsy at a meeting where they were announcing the results of a survey I’d taken part in. That evening I was asked to represent Young Epilepsy at the House of Lords in London to help get a law amended. This amendment would help young people in schools with conditions such as epilepsy, diabetes and ADHD get more support in school so I said yes of course. I represented Young Epilepsy at both Houses of Government in the UK and the law got amended late last year. In April 2014, I was invited to the Young Epilepsy Champions Awards. I did not win an award but I was honoured to be part of the event an to hear so many amazing and inspiring stories. I still do the odd job for Young Epilepsy and I am always looking forward to the next one.

My school life with epilepsy the past year has been extremely difficult for me and my family. I have missed over half of the school year and my Mum has had a nervous breakdown because of it. I have a lot of catching up to do in the run up to my last year of GCSE’s and indeed secondary school. However, I refuse to let epilepsy get the best of me and dictate my life.

A huge thank you to the E.A. squad for asking me to write this and for all the amazing work that they do.

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