One of the reasons I started this blog was to share my experiences of epilepsy. Mostly, I wanted people with epilepsy to know they’re not alone.
But my experience of epilepsy isn’t the same as everyone else’s. I have a particular type of epilepsy, and a history, and reactions that other people might not share. So I thought it would be a good idea to talk to others about their experiences with epilepsy.
A young man I know was diagnosed with epilepsy not all that long ago. To protect his privacy, we’ll call him Aragorn Skywalker. I’ve spoken to Aragorn before about his epilepsy, and I thought he had an outlook I’d like to share with you.
Do you remember your first seizure?
No, my first seizure was probably when I was a kid and it was an absence seizure, which you don’t remember. I don’t remember my first full-on seizure either because for me, they involve a form of unconsciousness. I do remember the aftermath of it. I was dazed, confused, I had headache, I was nauseous and my legs were not complying with my commands very well.
I was questioned about what happened and how I felt it was all very confusing and stressful. One week later I had another full-on seizure and soon after that I was diagnosed with epilepsy.
How did that feel, to learn that you had epilepsy?
It was and is a little scary but I am dealing with it.
How did your parents, teachers, siblings, and friends react?
My parents were scared and stressed and were a little overprotective for a while but they settled down to normal once my seizures were under control. My siblings were scared for me and if I was to act a little off or tired they would hover around me a little. My friends acted pretty much the same once I explained.
Epilepsy can be a life changer. Tell me about some of the ways you feel it’s affected your life.
Some of the ways epilepsy has affected my life are I now have to take a lot of meds, and I never had the best memory for that sort of thing, so that’s fun in that it is not. I have to be very careful about my stress and anxiety levels, which is difficult, especially as I also have an anxiety disorder.
What do you want people to know about you, and about people with epilepsy in general?
I want people to know that epilepsy, once controlled, doesn’t really affect your life. This doesn’t mean that it isn’t still stressful and a struggle. It is difficult to control and there are some people in whom it cannot be completely controlled or controlled at all. But just because one has epilepsy does not mean that one is invalid or stupid, it simply means that one has an extra difficulty going through life.
I would discuss that it, with control, actually does not really affect your life. But, that does not mean it is not still stressful and a struggle.
It is difficult to control and there are some people where it cannot be completely controlled or not at all. But just because one has epilepsy does not mean that one is an invalid or stupid, it simply means that one may sometimes need some extra help.
It’s just like if you broke your leg and it didn’t set properly and now you have a limp. The limp does not make you any less of a person, not does it mean that you are any less capable in most circumstances. It does mean that in some circumstances you might need a bit more help than other people. That’s all.
I’d like to thank Aragorn for being so frank. Epilepsy isn’t easy to deal with at any age, but he has come to his own terms with it. I wish him well.