This is something I am extremely hesitant to talk to people about but it’s a big part of my life and who I am so I will. Living with epilepsy and seizures is one of the scariest things I’ve every gone through and something that gives me severe panic attacks. My seizures are under control with meds and better watching of my blood sugars but they’ve left a scar on me and my brain that I can never repair.
I’ve lost a lot of my short term memory and recall, but you won’t notice it unless you talk to me in person. I come off flaky and ditzy and most of the time I will play if off and just let people think that’s just how I am. It’s better than feeling different. Most people don’t notice the signs (unless you’re very close to me), but I do. Every time I forget a name. Every time I forget what I’m doing and have to stop and try to remember. Every word I mix up. Every small attack I get when the trigger is going off but never sets of a seizure and I can’t scramble fast enough away from other people so they don’t see it. I don’t like people to see me cry because I’m scared or see me desperately trying to hang on to the reality when my brain’s trying to pull me away. People don’t understand and no matter what you say you can’t make them either. I don’t want to look weak. I want people to see me, not my disability.
You don’t have to be handicapped to have seizures and normal people like me, that don’t look like they would have them do and there’s so many more people out there like me that deal with them everyday. I wrote a post about it once, one that was both hard and emotional for me to write but it made me feel better-slightly.
One thing I want people to know-don’t be scared of someone who has seizures or look at them strangely. I’ve seen the look many times, especially if someone sees you have one and they are terrified of being alone with you and look at you differently from that day on. I’m different but not because I have seizures or my head gets all funny sometimes. I’ve been asked several times to speak about it because I’ve been an inspiration to others dealing with it but I’ve always been ashamed, like having someone label me as weird.
It all started with one seizure from low blood sugar (hypoglycemia) and a huge amount of seizure meds I didn’t need that caused damage to my brain. Now I’ll never outrun them and whenever I’m stressed, tired, scared, nervous or go low my body immediately responds with a seizure or a small attack that feels like I’m stuck in that weird mode before the start of a seizure and everything is turning black and the world disappears. It’s a terrifying feeling. Nightmarish.
But….it’s something I deal with every day of my life and will for the rest of my life. The fear-the worry that someday my son will see one and get scared. He’s already seen me have small attacks, where I grab hold of something and talk myself out of it until I can think clearly again.
He’s asked. And it hurts.
Right now I can play it off and he’ll laugh but someday I’ll have to tell him the truth. I’ve had some people think I’m not a good Mom and shouldn’t be alone with my baby and that hurts-a lot. I’ve never been incapable of taking care of him and now he’s big enough to be okay if it ever did happen.
So please, take a minute to stop and count your blessings. You don’t know how lucky you are.