My specific condition appears not to be genetic. I had genetic testing done very recently, and none of the genes suggest epilepsy. With that in mind, my family is no more likely to become epileptic than any other person (which is 1 in 26). I’m that 1 in 26 in this case.
What does that mean? It’s still unknown why I have epilepsy. It’s not the result of a surgery, or a massive brain trauma, or a minor brain trauma. It’s not genetics, it’s not self-inflicted. It’s just here, the way I have brown eyes and a lot of birthmarks.
I cried a lot when I found out. There was part of me that had sort of hoped that it was genetic. Obviously, I would never want anyone else in my family to go through this, but at least if it was genetic, there would be a reason. There would be a cause for me having seizures. It wouldn’t be just a matter of my luck that I am that 1 in 26, there would be grounds. I would be epileptic because it’s genetic.
But it’s not, and when I’m not being unduly emotional, I am very VERY thankful for this. I’ll take being epileptic any day on my own if it means my immediate and extended family doesn’t have to worry about it. Even if it still means that we still don’t know why I personally have epilepsy.
It’s interesting the things I’ve discussed since the confirmation that it’s not genetic.
When I was told that it’s not genetic, I had a disagreement with a medical professional (the geneticist). He advised me that because it’s not genetic, I don’t have to worry about passing it along when I have kids. I said I am not going to have kids because I don’t want to have kids, not because of epilepsy. That escalated quickly with him ending it by letting me know that I will change my mind.
I’ve been told that the reason I cried and was upset was because of my medication, not because of the results. It was not because I still didn’t know why I am epileptic, it’s the medication and being a woman.
On the other hand, there are the things I’ve thought about.
Otherwise, I have an awesome body. How often do you hear someone (anyone) say that? Last week I ran 60+ kilometres. That is my decision from my own motivation. That doesn’t have to do with genetics or trauma, that’s just straight-up my goal-setting and getting to that goal.
What else? I have a nice smile. It used to be a little better before I smashed out some of my teeth (during a seizure) and there is always the chance that I will smash out more (I will likely have more seizures). Regardless, I’m still happy with it and I still smile. Again, choice. I can’t change that I knocked out some of my teeth but I can choose to be pleased with the ones I have (real or fake). I am also glad that I have the opportunity to have fake teeth put in.
Let’s see. I can walk in high heels pretty darn well. I can’t dance well, but I love to so I do it anyways. I have quick reflexes and over-plucked eyebrows that Maleficent or Jack Nicholson would be impressed by. I have a birthmark on my face a la Cindy Crawford or Robert de Niro.
When I look in the mirror, I don’t see my epilepsy. I see my ability to run, and that comes from my own dedication and hard work. I see barely-there eyebrows, but that was bad choices started in high school (same with the dancing). I see a birthmark and that probably does come from genetics. I don’t look in a mirror and see the seizures. I see a runner. I see a person who gets back up again after a fall.
Point is: My epilepsy is not genetic and the cause is still unknown. The person I am, strong-willed, dedicated and motivated, who loves her body including (and/or because of) the birthmark and fake teeth, is genetic. No question. I can’t really speak to the dancing or the over-plucked eyebrows; that is entirely my own fault.
I may never get closure on this. I may never have the answers I want. I just have to accept that that’s okay.