I Take Pills

(Sarah with pacifier, me in pink dress)

It’s 1985. These two little girls are happy and by all means quite normal indeed. They’re twins, identical, born two weeks late, each weighing in at about six pounds. They have a brother who is eighteen months older than them who will later graduate as a computer science major from WWU and work at Microsoft before age 24.
These little girls have epilepsy, and will struggle in school their whole lives–more or less anyway, not reading until age 9. Their mom will notice that they often seem distracted, sometimes completely vacant. She will notice that their eyes are open but not seeing, only for a millisecond, but hundreds of times throughout the day. Their eyes flutter but it’s a mystery why. They are taken to doctors, no one knows why they flutter or why their heads visibly jerk at random moments.

(Sarah in white, me wearing red)

Age three: Others notice the jerking and fluttering. Is it a “twin thing?” Multiples often have similar habits and a special language shared only between themselves, maybe it’s just something like that.

2001: A new family doctor notices the girls’ eyes rapidly blinking under his florescent lights. Epilepsy. Amazing that he made the connection. Aren’t everyone’s eyes bothered by nearly dead florescent lights? :P
Twin A is sent off for an EEG (Electroencephalography), the results say that she indeed has epilepsy.

The twins go to see a neurologist. That was one of the best days of my life–I now had a name for the problem that had limited my life. I could take a drug that would make me normal–that would give my mind and my body limitless ability to learn. My salvation upon earth.

Juvenile Myoclonic Epilepsy and Absence Spells.

Honestly, I (Twin A), didn’t care at all what the official symptoms of either were. All I knew was that I’d spend all the previous years of my life thinking I was the stupid and now there was a solution–there was a name, a medicine and there were OTHER PEOPLE who had the same problem.

Sarah and I were put on 25 mgs of Depakote. Like I said, I expected an immediate cure. Sadly I felt nothing but sadness and hair loss. We both gained weight and decided to get off that medication.

2004: I am on 450 mgs of Lamictal and 50 mgs of Zonegran. I had never felt healthier or happier, my grades (I was in my second year of collage). The prospect of ever being able to drive had been ruled out because our seizures are too small to really count. But since I was feeling so great I decided to count them–if I could go six months without a single one I could learn to drive.

2006: I am engaged to be married. Since not even lab rats can successfully carried young while pumped full of Zonegran I don’t want to take any chances and choose to get off it. Week One of weaning myself off Zonegran: my seizures worsen and I stay home from work for a couple days, I feel depressed and confused over just the smallest details in my life.
I remember then how I planned to completely cut medication out of my life after graduation. How wrong I had been. After cutting that small bit of a medication that had made my life nicer I saw how dependent my body had become on anti-epileptic drugs. Every month $720 of Lamictal goes into my body just so that I can feel OK.
My pregnancy was perfect, well I hated the weight gain–but epilepsy wise it was quite comfortable and surprisingly seizure free.

Just putting this up for you fortunate people to see who weren’t with me for the belly pic days. I can’t believe that was me and I wish I could acquire a baby without ever having to be that big again! Sadly, not the case and really in the long run it’s worth every ounce. :P

2007: Twin A is healthy and safe, so is her sister many many miles away. When they feel stress or are very very tired their eyes flicker still. Perhaps in a moment they stop and stare, just because. That’s just how the girls are, and as far as they know, that’s how they will always be.
At 65 years old, chances are high that they will still have Juvenile Myoclonic Epilepsy and Absence Spells despite both of these being described as childhood illnesses.

The doctor doesn’t know why we both have it, or why a genetic disorder like this isn’t seen in either side of our families–it’s just the way it is.

me, Deeder, and Sarah fall 2006

Some days epilepsy feels like a very oppressive handicap, others I forget that it’s with me.

Today was a day when I had it.
Yesterday was busy and I forgot entirely that my frontal lobe isn’t like yours–that I’m unique. This morning I woke up with a huge headache and twitch fingers, my legs were shaking a little and my eyes were heavy. Darren got Deeder up and brought him into our room, through my heavy eyes they were both a blur. It was the baby who helped himself to breakfast and crawled off the bed when he was done! Ever had a whole pot of coffee when you normally drink just one cup–that’s about how I felt, nothing too serious just annoying enough to give me a bad day!

Through music class I could hardly focus–through the day I delicately overdosed on my medication so that the following day I will feel what I call normal. The normal that never will quite be normal, the normal that is me.
Tomorrow’s another day.

Goodness I’m thankful that Darren had today off! Diederick was in a bad mood and Daddy was here to say no and to take care of naps–good stuff. :D

Oh hey, I have to add that while meds haven’t made me all I’d like to be they have done a lot–I feel that I understand the world more: say 1,2,3,4,5 and I hear all your points–I don’t miss 3 and 5 and walk away thinking you’re an idiot! :P And I can only imagine how my seizures would treat my head and my body if I didn’t have Lamictal running through me.
I take pills, and I’m so thankful God has provided us with nice insurance that covers pre-existing conditions. That’s one of our worries with moving away–not knowing if we’ll find insurance that will take me!

Yep, OK, goodnight :)

7 Responses to “I Take Pills”

  1. Wendy says:

    WOW! I had no idea….I am glad that you FINALLY found out, even if it was a little late. Love the belly picture! You were adorable:o)

  2. Lauren says:

    I, too, am thankful for medications. I have some anxiety issues and thankfully there are meds to help relieve some of that. It got pretty bad in college, but now it’s settling down.
    Anyway, one of my co-workers has had 2 EEG’s in the past week. She easily faints/passes out when her body is stressed (the doctors finally believed her when she had blood drawn around 1pm one day (after not eating past midnight) and she passed out and had a sort of seizure).
    She is always claiming she has seizures, but they seem so minor (used to work with a guy who had severe seizures – scary!), so un-noticeable, that sometimes I just feel she’s making them up. Of course, what do I know?
    Yesterday they performed the Table-tilt test on her to mildly stress her system. She ended up passing out and her heart supposedly stopped beating for 20 seconds! SCARY! Then she followed that up with another EEG.
    She’s 31. All I can say is be glad that you were diagnosed when you were 16-ish, still relatively early enough to lead a successful, “normal” life. Whatever “normal” is :)

    I hope you have a fantastic day, and a great weekend :) Hopefully you’re feeling better, too!

  3. Laura says:

    That’s terrible, Lauren!!! I hope they figure out what’s wrong with your friend–even with all the research that’s been done these days there are still so many mysteries.
    Thanks Wendy–I sure didn’t feel adorable, in fact I still feel fat sometimes despite having lost more than my 60lbs of preggo weight.

  4. Gramma Momma says:

    Hi, Sweetie,

    It’s been so busy here that I just now am getting to read your post. Dr. Braun would be proud of you; that was an accurate and educational post, with links included to further information about the two forms of epilepsy!

    I’m VERY thankful that we finally found out how to help you girls, so that you could get on with the business of learning. I always knew that you were intelligent. I just didn’t know what was interfering with your learning.

    Hope you’re feeling better!

  5. Sarah says:

    I really loved that post about us! It was so cool how the first couple of paragraphs were written from a removed, narrative view-point. When I have a little more time I will read the whole post.

  6. Tater's Mom says:

    This post is beautiful, Laura. I got goosebumps and tears at this part “The normal that never will quite be normal, the normal that is me.”

    My mother suffers from an extremely severe form of multiple sclerosis and is paralyzed from the neck down (including some paralysis in her throat making speech and eating very difficult). Yet, she mirrors your attitude in that some days are good and some are bad and you just have to take what life has given you and do the best you can with it. I know she’ll enjoy this post as much as I did so I am going to lead her to it.

    Thank you for being an inspiration. Attitude is EVERYTHING.

  7. […] take my boy out in the summer and fall weather? I make excuse for it easily enough–I have epilepsy that’s why I can’t let my son live a normal life of regular interaction with peers. […]

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