If you know me or even have read this blog then you know I have epilepsy. Recently something has been bothering me a lot. It's something that I've always dealt with but never really acknowledged until I was bothered by it times ten this past week. What I mean by that is that usually it's not so bad, but when almost everyone you care about does this annoying thing it makes my head want to implode.
So what is it that is bothering me so much? It's actually a very simple thing. Something that I know comes from people out of concern and love, but it doesn't change the fact it drives me up the wall. In fact most the time when this thing happens I'm picturing myself punching your lights out. This thing that is so annoying is the you can't do that things I hear on a regular basis. What do I mean? Hear are a few examples:
"You can't swim alone. It's to dangerous for you."
"You can't drive a long distance. It's dangerous."
There are many more. Some epileptics take these phrases to heart and don't do anything. They never drive, swim, boil water, walk up the stairs alone, and etc... Does that sound like living to you? Living in a bubble trying to shield yourself from all the what if's and could be's. I don't think it's living.
Sure having a seizure disorder adds some risks. Having a seizure disorder while pregnant has added risks, but I don't dwell on what could happen. If I did I would not have a job. I would not be a student. I would not be a wife. I wouldn't be able to drive. I would never have experienced the sheer joy of the ocean. I would be a lonely girl still living with her parents. Deeply depressed and wondering why continue to breathe if living with seizures is designed to steal life and it's joys away from me. Heck I probably wouldn't have even found control like I have. Why? If you view the whole thing as hopeless then why consider testing for brain surgery. Which is when I found control after all.
When I decided to go for testing I knew it was a choice for my own health. Not just because you can get hurt while having a seizure, but because at the time I was at my limit. Mentally I just could not cope with it any longer. I was tired and wanted answers. I was desperate. If I had arrived to that mental state without breaking some of the rules of activities we epileptics shouldn't do. I would never have considered brain surgery. In all honesty if I didn't ignore those rules I would have spiraled into depression and possibly my own suicide.
Ignoring advice and doing what my heart tells me to do has taught me life is worth living. Has kept me away from such dark thinking. So when someone says Don't it's to dangerous. What I hear is don't live life. Let your epilepsy win. or at his moment in time let being pregnant with epilepsy define who you are.
Recently I let loved ones win one of those battles, but in all honesty when I let them win this time. A part of my heart was broken. I knew I was ignoring who I was and what I fought years for just to make them feel better. Make them feel better in exchange for making myself feel like a piece of shit for giving up on things I have fought for a long time. It is quite honestly something I will look back on for the rest of my life with shame for not insisiting on my way. How can I be a proud mother when I back down on what is truly important to me? The whole inicident put into question who I am and who I should be? Honestly thinking about it brings me to tears. While telling someone they can't out of love may seem like the caring thing to do. In my case it does far more damage than it helps. The incident which I won't go into has left a deep scar that I'm not sure will ever fully heal. It's something I hope I never have to explain to my child why I gave up something so important to me. I certainly don't want my child growing up thinking that your dreams don't matter. Only what others think about what your doing does.
So loved ones next time you see me going to do something or talk about something I want to do. Even if you have nightmare senarios in your head please keep your mouth shut. I care to much about what others think that care about me and I them. I just may give up a goal, dream, or something I truly love to make you happy leaving myself in tears at the end of the day. You have to let me make my own decisions and let me live with the consequences. If you can't do that well then you aren't much of a friend at all.
Love you-
Susan Thomas
P.S. I'm sure I'm not the only epileptic that feels this way!
