Epilepsy and Life…

I was 15 when I had my first fit. My teenage years were spent being good. I did a lot of sports, I was academically fairly bright, I had friends but was never Miss Popular. One girl went so far as to say I was too ugly to like! Teenagers eh?! I was on a school ski trip to the Alps when I fell, in a fairly spectacular fashion, in to the life that I now live. I didn’t know it then, but that fall was to change my life in ways that I could never have anticipated.

My brother worked as a paperboy in a newsagent when we were teens. The day I had my first fit was the first time I did my paper round. That was the day of many firsts. Like the rest of my teen-days to that point, nothing about that day was spectacular. Nothing was going to prepare me for what I was going to have to deal with. I don’t recall feeling any different that day to any other. I liked English classes, I was good at it and I enjoyed it. That particular English class, I don’t remember. I only know what others told me. Sometimes it’s hard to separate true memories from the images I conjure following the descriptions of others. I will never know how much of what others tell me about my episodes is true. I will never know how much has been played down or omitted. That English class was where I had my first seizure. Wooden desks and chairs are not forgiving. Neither are teenagers! Bruised physically by the school furniture; scarred emotionally by pupils not in that classroom.

Life. How many of us know at 15 what the next 30 years will bring. I didn’t. I’m 44 now and I look back and wonder how many of my teen dreams became reality and how many of them I actually just can’t remember. When I was really little, I wanted to be a farmers wife. I could think of nothing better than being surrounded by animals all day every day. Then I found out that animals die. That there was the end of that dream! I can also remember that for a short time after that I wanted to be a “spaceman”. I have no recollection of why that was but I know it didn’t really last long. Probably a good thing! I wanted adventure, I wanted motherhood and I wanted love. Fairly standard I guess. I’ve never been motivated by money or materiality. Yes, I like nice things – who doesn’t – but “things” can’t truly replace feelings or memories. Most of the things I own, serve as reminders of the places I’ve been, the people I’ve met and the adventures I’ve had. Some would say I shouldn’t need these physical reminders. I would remind them that my memory is flawed. Its capacity diminished by a combination of factors. Maybe I’ll get to them later.

Life is a series of choices. A set of decisions. Even making no decision is a choice. Having epilepsy is not a choice, it’s a constant. Unlike my hair colour, I can’t choose to change it. Because it’s a constant, it becomes a factor in my decision making process. I’ll freely admit that not all the choices I’ve made have been great. Some have been positively atrocious. Too often, my heart has been ruled by my head and more often my head has been hostage to the misery of fear. Fear of what. Well that part I never truly bothered to find out, although I can hazard a few guesses. 

Epilepsy, though, is not something I’m scared of. At least not the physical aspect of it. So while I know that epilepsy will always be a factor in my life, I also know that it doesn’t wholly drive my decisions. In fact, some of the best decisions I’ve made have been to spite epilepsy. 

The parts of my life I’m most proud of, is when I’ve swallowed down the fear and I’ve used epilepsy as the reason to do something that most believe I shouldn’t. Often I’m proving more to myself than I am to others, but it feels good to know I’ve done things that some think I should not have. Along the rivers of doubt that course through my veins, there are jetties leading to solid ground. Too often I’ve passed by these potential groundings through fear. Too scared of what I might find. Instead of growing confident with age, I’ve grown more fearful. I’ve spent so many years afraid what others may think. My parents, my partners, my friends. Strangers. Too many years with no real knowledge of why. 

My point is, yes there is a point to this waffle…my point is, epilepsy has not been the dominating factor in my life. Having epilepsy has not prevented me loving and being loved, travelling, owning a home, having a career or leaping out of a plane at 12,000 feet. Being prescribed some medications have damaged parts of me; that’s true. Epilepsy has caused me some physical damage; that’s true. Epilepsy has contributed to my depressions; that’s no secret. But epilepsy has not prevented me from living. Epilepsy doesn’t have to have that control over me. It’s my attitude toward having epilepsy that dictates whether I’m battered by the current, clinging onto a raft or climbing out on the jetty. 

My fears existed long before I went skiing. My doubts were born years before I was diagnosed. The foundations of the walls I build around myself were laid early, probably way earlier than they should have been. There are weaknesses in the walls though. When I find them, or more often when others find them, they allow me to see and live a life without fear. Just as my epilepsy is, it seems, completely unpredictable, so are my decision making abilities. When my head is ruled by fear, my emotions stray out of control and are there, on my sleeve, to be witnessed by all. Usually, not always but with a scarily predictable frequency, my out-of-control emotions surface at the most inappropriate times. When that happens, I hate myself with such ferocity I scare myself. I hate myself a lot. I don’t hate epilepsy. Epilepsy is part of me; it is not me. My life does not equal epilepsy and epilepsy does not completely decide who I am; what I do; why I do it; when I do it; or how I choose to live.

7 thoughts on “Epilepsy and Life…

    • Oh, I’m so glad! Thank you for your comment. I can’t imagine how hard it must be to have 2 babies with epilepsy, but there is hope. The journey is not always easy, there is no point in sugar-coating that, but there is life with epilepsy. A lot of it. Please do feel free to contact me if you ever want to chat… Take care.

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