To all my family, friends and anyone else who has questions,
Drop whatever it is you think you know about epilepsy/seizure disorder. Because whatever you think you know, it's probably not true.
For starters - everyone's seizures present differently. While some people might fall to the ground and shake, others will look completely normal and continue what they're doing. That's what mine are like; no one else would ever know I'm having one unless I tell them. But inside my brain, there's a lot going on.
Secondly, I don't think anyone should see me any different just because I've been diagnosed with epilepsy. I've been having seizures my whole life - I can recall times when I was jumping rope as a four year old and I would have one. I used to cry, but because I didn't fall or shake, no one knew what was happening. They thought I wanted attention.
To me though, seizures are normal. Of course I never knew I was having seizures, because I really didn't know what a seizure was. I knew I had this weird head thing that sometimes happened, but it was completely unpredictable when it would happen and never really had a major effect on me. I mean, strobe lights are fine. I've had some people ask if caffeine makes it worse or better, ask me about physical activity, about anything and everything they've ever heard about seizures - I'm not a doctor and I don't have all the answers. But as far as I know, my seizures have no triggers, though sleep deprivation and stress are contributing factors.
The only thing I will say is that, on a number of occasions, I recall having seizures on the stairs and falling, while standing on a chair and falling. It makes a lot of sense to me now why I am terrified of what I call "every day heights." Roller coasters don't scare me cause I'm strapped in - a seizure won't affect me. But seizures do affect me in small heights. So now when people make fun of me because I won't stand on a chair, I can tell them I'm epileptic and they'll feel really awful. (Win)
It's hard to explain what a seizure is like unless you've had one. Normally, I feel a warm sensation in the same part of my head (not painful, but uncomfortable) and then the left half of my face goes numb. This always happens. The rest depends - if it's a minor seizure, that's it. A mild seizure and I might have some difficulty speaking or stumble over my words for a couple seconds, probably lose my train of thought. In a major seizure, it'll be like I'm in my own world. I'll freeze up - I might be able to continue what I'm already doing, like walking, but I can't react to anything around me. I can't hear you if you're speaking, and when I come to, I might not know where I am or what I'm doing. My seizures so far haven't lasted more than 45 seconds for a single episode. It can be as short as two seconds.
You can get accurate information and answers to many of your questions at the Epilepsy Foundation: www.epilepsy.com
The first medication I was on made things worse - the side effects were bad, but they actually made my seizures more frequent. I'm on a new medication now and I'm hopeful that it'll stop my seizures. Honestly, I'm not too concerned cause I've kinda been kicking butt at life for the past 19 and a half years with unmedicated seizures, so I'm pretty sure I can still kick butt.
In the words of my adored grandmother Pille, "If you've accomplished all that you have accomplished with an exhausted brain, just imagine what you will be able to do once your brain is well-rested. You amaze me."
My doctor says not to drive, climb ladders or swim/take baths unsupervised. On not driving - I get it, and I won't. I can really hurt not only myself, but also someone else if I seize while driving. This is only until my seizures are controlled. However, on climbing ladders and swimming, these are normal things that I've done my whole life.
Just the day before my diagnosis, I was climbing a ladder to the top of a boat, so if I had a seizure, I could have fallen off into the water and drowned, according to my doctor. But I don't worry about this because I'm not going to avoid living my life - I'm just going to live. If I want to go to a country where I won't have access to my medicine, I'm going to go, because it's my life and I want to live it. If I want to drink, I'm going to, and if I want to take a bubble bath, I'm taking a damn bubble bath. This is a minor bump in the road and I won't let it get in the way of me living my life how I damn want to live my life. So, expect me to be my complete normal self.
Sincerely,
The same girl you've always known.
