Real Life Stories: Ed

Hello Everybody,

My name is Ed and I live in a town called Saffron Walden. Back in 2015, at the age of 32, I was diagnosed with epilepsy. At the time my son was only 4 months old and, as new parents, things were put way out of kilter. Fortunately, we were so lucky that people around us were able give us the support we needed during a very tough 12 months. Since being diagnosed, my seizures have just about been put under control - they started as nocturnal and then progressed onto daytime seizures. It’s been a struggle as I’ve suffered from depression quite badly but I owe it to my wife for being so strong and, not only handling the emotional, but physical side that epilepsy can put on loved ones.

Being diagnosed at a later stage in my life was very confusing to say the least. Why now? Why me? How? These questions kept going around in my head. I have always struggled to let my emotions out and really talk about how I’m actually coping. The one thing I always feel is that I don’t want to burden people with my problems. My entire family have been through this with me but at the same time, when I’m feeling down, I don’t want to worry them even more.

The one thing, more than anything, is how epilepsy has affected me as a person. At the start I lost all of my confidence and I felt like I was unable to do anything properly. The side effects of my medication caused me a lot of anxiety, not being able to sleep, forgetting things, not being able to string sentences together in a conversation - I found this one the most embarrassing, especially if it was someone who I had only just met for the first time. But most of all what if I have another seizure??

Still now I don’t feel fully confident and some of anxiety is still there but one thing that has helped me along the way is my art. I have a huge love for collage and how it can take you away from the day to day stresses of life. It’s such a versatile art form where you can be as creative as you like and have fun. Back in 2019, I opened up collage workshops at my local coffee shop. I wanted to introduce collage art to all types of children/adults and show how fun and relaxing it can be. I had such a great response and the feedback was brilliant as people did really feel relaxed but most of all loved making art!

To all of the parents, carers, girlfriends, boyfriends, partners, grandparents, brothers, sisters and so on you are all amazing people. Never in a million years didn’t I think I would experience anything like this but to have the support of loved ones has kept me focused and together.

To my fellow epilepsy friends, however you are feeling right at this moment you should be proud of who you are. It’s not easy being young especially with a chronic illness and the current situation. From some of the stories I have read so far you guys have shown that you won’t let epilepsy beat you. If I have one bit of advice to give I would say this…The thing that helps me when I’m feeling unsure, angry or just sad is music. Crank up the hifi (showing my age) or put on your head phones and just embrace it. If you are able to dance around the living room, your garden or wherever and just go for it. I’m 38 now and my kids love it when Daddy puts his music on (no Dad dancing here may I add!) It does help and I hope it helps you too.