Inside the mind of a fantasy writer

Purple Day

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.


9 responses

  1. I’m glad you shared. My experience makes me less leery around it than most people, but most of the weird looks come from not knowing what to do, I’m sure. That helpless feeling. Some people are just going to treat you that way, but those who know you won’t. We all got our baggage. I’m glad you shared yours.

    March 26, 2013 at 7:45 am

    • Since its something I usually keep to myself and aren’t very open about I was debating taking down the post. I hate people knowing and a lot of my friends (in everyday life) don’t even know about it either, they just know I’m diabetic. But-sharing might help me be okay with it, which is why I did. Right now it still embarrasses me to say. Thanks for making me feel better and have the courage not to take it down 🙂

      March 26, 2013 at 7:55 am

  2. watch a movie called “memento.” it’s about someone with a great memory issue. very interesting film about what someone does to remember important things, and the film actually goes backwards. it starts at the end, moves in increments of about 10-15 minutes, and then backs up as the main character sees what happens but doesn’t remember why, and then we back up again to watch as he re-learns and remembers what happened before, and before, and before that.

    but you’re smart, so maybe you’ve already seen it.

    March 26, 2013 at 8:05 am

    • Nope-haven’t seen it. I don’t have a huge memory issue, more like lots of brain farts and its not all the time.

      March 26, 2013 at 8:59 am

      • well it’s still a great movie so go see it anyway. because i said so.

        March 26, 2013 at 9:06 am

  3. I appreciate your candor, and believe me, I know (some of) how you feel. I had my first grand mal when I was pregnant with my first child. My doctor diagnosed MS or muscular dystrophy, a bunch of things, but it was really from hormone stress. Second seizure – with second pregnancy. Since then I’ve had grand mal seizures intermittently (and the neurologist suggested they are ‘stress’ seizures that occur when I’m stressed physically or emotionally). I have been able to function beautifully with no medication using, instead, meditation and yoga and eating right and watching my stress, of course. I think so many of us have disabilities that we don’t talk about in public, fearful that it will drive people away. The majority of people who know me, know nothing about my seizure disorder. But I’m fortunate in that they occur seldom.

    The right medication helps so many with seizure disorders. I hope you can continue to get stronger, believe in your abilities, and communicate with your child about your condition in a non-scary way. And keep writing!

    March 26, 2013 at 9:16 am

    • Thanks for sharing your personal story as well. I haven’t had a seizure in almost four years (knock on wood) but before that I had the grand mal type like you said you had. When I got pregnant my family freaked out (it had to do with the hormone thing increasing the chance of seizures) because I’m not very healthy. I did have one when I was pregnant but my bf was there and he’s awesome at taking care of me (and still is). He stopped it quickly by giving me juice or something (mine don’t stop until you do) and luckily I wasn’t alone because I will sometimes stop breathing and all that other scary stuff. I actually never told my family about that one because they get stupid about stuff like that, like I’m a kid or something. I fortunately am on meds now that ward them off pretty well but they have bad side effects that mess with my focus and the like. I still get the trigger feeling of them a lot, (you may or may not know what that that feels like if you haven’t had many) when I’m upset, nervous or just plain tired, which sucks but is manageable.

      Living with something like epilepsy makes me thankful for everyday because I know what it feels like to think you’re going to die or to be afraid of losing everything. I know the value of life and I wish all those people who whine about how bad their life would see that. The thing about writing is that even at the time I was sickest, I could still write. I could still produce beautiful words and stories and that was my hope-the thing I held onto when my body let me down. I knew I’d be okay then-and now I am.

      March 26, 2013 at 2:21 pm

      • Yes, writing is a savior in many ways – it’s our way of expressing ourselves, even if no other way works. Thank goodness for that gift, and yes, for the gift of appreciating each and every day. Stay well!

        March 26, 2013 at 4:56 pm

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