I am NOT Epilepsy...

[Mandi]

This is a post I made over a year ago in another forum. I wrote it while corresponding with a fellow Epi friend. I got a lot of responses on it over there, so I thought I'd share for anyone new coming in. ;D

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In actuality, I don't fear having Epilepsy. If that is my card in life for right now, then I know that I have it for a reason. It is here to teach me something. I already know that there will be good days and bad days because I have had them. Sure it's scary, sure it makes me mad, sure I wish it weren't me. But the fact is, it is, it does, and it most definitely is me.

I somewhat agree with looking at Epilepsy like a child, but probably in a different fashion. I think in some weird, twisted, messed up way, it is a gift. It IS here to teach me who I am, how strong I am, and what I truly want. Today, I don't consider it a burden, but that doesn't mean I'll feel the same way tomorrow. Luckily, my moods change often.

I don't consider myself defined by my Epilepsy. I also don't define myself as Anxious or Depressed. I don't define myself by my skin being too pale for my liking, or that my butt will always be the size of Georgia. I'm not defined by being a survivor of mental abuse, or a survivor of molestation. I don't want to later use it as an excuse, as I have done before with some of the previous. I do have an old soul, this I know for sure. I've been told this for years. I tend to learn things very early on with all of these "crisis" and know what I need to do with them. All of these things make up a part of who I am, sure. But they aren't WHOLLY Mandi.

Mandi is a young woman who grew up in a small town and loved the silence in the country, the simplicity of life. I love fireflies and wild daisies. Children touch my heart. I still cry every time I read To Kill a Mockingbird, and my favorite movie will endlessly be Sleeping Beauty. I have an undying love for gummy worms and my brothers. I am a writer, a poet, an artist. I am a student of life being taught by my Granny, the most beautiful human being anyone could ever meet. I am a daughter, a sister, a granddaughter, a niece, a cousin... I am a friend. I am God's daughter, although I haven't always been the best one, and honestly had lost that path a while ago, and am just now finding my way back. Mandi loves to read because I crave knowledge in stories, in human nature. Mandi is strong, but I don't always give myself enough credit where that is concerned. I am opinionated and will argue my point into the ground, even if it's not right in others people's minds (and not always in mine), but I always stand up for what I believe in. Mandi has made mistakes, ones that have hurt those I love very badly, and I live with it everyday. But even in the bad things there are always lessons. I don't regret the bad, because that's where I've learned my most IMPORTANT lessons actually. Mandi knows with no doubt what unconditional love is. My list goes on and on, but one thing I am not. Mandi is NOT Epilepsy. Mandi is just a girl that happens to have it. Sure people around me that I love, and even people around me that I don't, know that I have it. But I would surely hope that isn't the first thing they see in me, so why should it be the first thing I see in myself?

This is not the first trial in my life, trust me on that one, and I'm sure as heck it won't be the last. I've learned not to dwell on the unimportant. There is gonna be a day when I really WANT to do something, and because of whatever the reason, I simply won't FEEL like doing it. Well, forget it, then I'll do it tomorrow. When I said that the seizures were like "little deaths", I didn't mean that I thought this was the end of my life. Far from it. I said little deaths because in a way, it IS like the physical act of dying, at least for me. I pass out cold, have the seizure, and wake up not knowing exactly what happened in the last 2 minutes. I know I had a seizure, I know I blacked out, but I don't know what ACTUALLY happened. I don't know what my body did, I didn't see the fear on the faces of my loved ones, I didn't experience that fear myself. I wasn't aware of what was happening. When people die, it's the same. I, however, have the GIFT of waking up, being scared for a few minutes, feeling like crud for awhile, comforting my friends or family, but then getting up and starting over. "Death", in the way I am meaning it, .... is not always a bad thing.

I do live my life, everyday. Some days I get a lot accomplished, others not so much. I put my time and energy in the things that matter the most at the moment, and the rest can wait. I have many dreams, and hopefully I will have enough belief in myself that they will all come true. The most important thing out of everything though ... out of going back to school, becoming a writer, curing my disorders, having all I've ever wanted..... out of all of that, the most important to me is simply being a good person. If I can go to the bathroom and brush my teeth at night and look in the mirror and smile because I know that I had a good day, and lived it right, well then I'm not doin too shabby.

[fourstar]

My childhood Dr and my dad both taught epilepsy was not excuse.I was to live my life to the fullest despite the epilepsy. MY mom
always said no one is interested in your problems. That you keep for your family. All my friends knew I had epilepsy but life was not
any different for me than it was for the next person. Does epilepsy define me? NO . Am I epilepsy NO. I am person who takes medication to control a disease. I have many gifts and I just concentrate on shareing those gifts. As my first Dr said I am no different than a diabetic. Life goes on ,adjust. He was tough but he gave me the greatest gift of all attitude,independence.

fourstar

[Mandi]

Excellent reply Riva ;D

[lizard]

Take a bow, Mandi! Awesome post!! I have felt the same way since a reaction to a med in college nearly killed me 20 years ago. Every time I hear "epileptic" or "victim of epilepsy," I cringe. I actually have an underlying condition resulting in my epilepsy--hydrocephalus--and if I had let them rule my life, I would have died long ago. Instead, I live FULLY, raising two awesome kids (including one with autism), and I have no (serious) complaints. Life is very good.


Keep on keepin' on!

LIZARD

[heidihope]

Mandi, I am so glad you posted this again. I just read it to my boyfriend, Josh, and it's funny how much of it are things that I've said to him before. It seems like so many of my conversations focus on seizures. Even yesterday, with Josh's step-mom, she asked me to talk to her daughter about it, because she was really concerned about what to do. I always tell people I am the same person after a seizure that I was before. You don't have to treat me differently, or try to talk about it to make me feel more at ease. It is like little deaths; I couldn't explain that part better than what you did. Josh's step-mom said that she had a lot of respect for me, b/c seizures don't rule my life or define me. They're something I go through, and that lolliepops, but I am not defined by having a seizure disorder. And that's my biggest thing; I am not epilepsy. You can't define me, you can't put me in a box, and if you try, I'll change to prove you wrong.

[andrew]

All as wise and as true as when you first wrote it, Mandi. Thanks for posting it again. And I agree with your doctor and your dad, Fourstar, though it may have been tough to hear when you were still a kid. It's easy to hide behind our condition. I think we all do that sometimes. But whenever we do, it's starting to beat us.

I've also been wondering: is it especially easy to be defined by it because the right word's there? That is, we have Epilepsy so therefore we are Epileptics. Whereas if you've had a heart attack, say, you'd just be 'somebody with heart problems.' A neat label gets attached and once it is, it's tempting to think of ourselves primarily in those terms. You're white, you're black, you're American, you're British, you're an epileptic, you're a diabetic. It may sound a little silly. But words can be subtle little devils and a single one can change the way we think of ourselves.

OK, I'll stop trying to be clever and shut up now.

Andrew

[fourstar]

Your absolutly right Andrew, after my Dr died and I was living in Montreal and I visited NYC and my sister had a 2 kids ,the oldest was 3
and the youngest was 3 months old. The oldest nephew wanted me to come over and visit and I didn't want to,cause I wasn't feeling well,I just got out of the hospital in Montreal and I was on new meds etc,etc. Well my mom said go over and I went over and I was holding my sisters youngest baby 3 months old and I screamed "the baby" and I had a grand mal.

From that time on I was never alone with her kids and my mother didn't trust with me kids even when my med was stbalized. But she never came out and said it. If my friends left me with their kids she went bananas.I have a big stigma thanks to mom and my sister. You know what I protected her precious child. Grand mal and all.

Words and insinuations hurt .........

fourstar
aka
Riva

[Mandi]

Such an interesting thing Drewboy.... I totally understand where you're coming from about how one word can so easily be a little devil. In my most down moments, I feel as though that word just haunts me. "Epileptic." It doesn't define WHO I am, but it is a big part of WHAT I am. Sad, but true...

[springmang]

There was a book published about ten or fifteen years ago called "You are not Your Illness", it's great reading if anyone's interested.