Becoming a GREMLIN!!

If it seems like all I did as a kid is eat cereal in a basement in Ohio (get it together LeBron!) during my summer breaks and watch 80s movies over and over so that they have crept so deeply into my psyche that I can't relate this struggle to anything else...


Well...you'd be close.  I also ate a lot of "Schwan - man" french toast sticks and personal pan pizzas that we microwaved frequently as well.  You gotta have lunch when you wake up at noon. Even if the pepperoni is square and everything tastes like salt.

So, this movie right?  There's this thing called a mogwai, and the one from the movies (because the first was so great they had to make more) is called Gizmo. Now, the owner of Gizmo has several rules he must follow in order for Gizmo not to become a gremlin. At the beginning of the story we don't really know what that is, and frankly we just know the rules and in case you don't remember, here they are:

• Never expose it to bright light (it will kill it)
• Never let it touch water (it will multiply)
• Never (ever...we are warned) feed it after midnight. (this is how we get gremlins)

Other than a love for a classic tale of an irresponsible inventor, his son, and a cute mogwai, the story has some personal significance.

Several months back, (like last August), so almost a year back, I started to notice that several things started to make my seizures worse.

•  Sounds (loud noises, low frequencies, high pitched repetitive noises, multiple conversations happening at the same time)
• Stress
• Lack of sleep
• Bright lights
• Foods, (there's a long list her so bare with me: sugar, foods with preservatives, artificial colors, wheat, sugar substitutes...basically fake foods in any format)

A lot of people are curious about the food thing - not sure why, but they like to ask and sometimes challenge the specific diet changes I  made while I was figuring out triggers. Sometimes people criticized, people thought I was doing it to lose weight (like that was a big concern) but whatever. The food part became the biggest "tell" for a seizure. If I ate something that was "fake enough" to cause a problem my feet would tingle.  And it didn't take long.  I would normally just stop eating the food, that was usually enough to stop the issue.  At first I didn't know what was happening and ate through the tingle which led to a seizure at restaurants. Plus, during the first couple of months one of my meds took away my desire to eat, which also didn't help the weight loss, so the result was a lot of weight loss really fast.

It's funny... I've been on meds before that which made me gain weight. When I told people that I'm on meds that had this side effect people had so much sympathy due to the lack of control, they'd say things like "I'm sorry, you know it's not your fault, I hope that things normalize for you soon."  But telling people I've lost weight and it's kind of scary because it happened fast and it was out of my control, well, there's no sympathy, as a matter of fact, people act like you're annoying...like oh, poor you, you've lost weight, BIG PROBLEM.  We have so many double standards as humans.

(Sometimes - that's called getting sick.)

But I won't deny that being healthy and getting to a weight that works for me is a focus in my life now, mainly because being healthy helps with my stress level and my sleep, and really my overall health. It helps with my disorder. I'm not perfect at it, but I try.

The nice thing is that when the medicines leveled out they helped make most of these rules less important. I mean, I can eat some things that aren't pure and not get into any trouble.  (Health nuts are shaking their heads) LOL.  Moderation right?  But, I just want to live a normal life and make healthy choices for myself because I want to not because I am following a list of rules that where I "have to."

But if you've read my last blog, you know that my meds haven't been working 100% and last weekend at a friend's lake house I had a seizure. That's the return of 2 seizures. I had a blood test the last couple of weeks and my levels are all low. This is not good news.  What's been different?

I haven't been following all of the rules.

Hang head.

Mostly...foods.  I delighted in a little ice cream. Then I tried a little more.  After I had the first seizure I was so mad and so convinced that nothing was working anyway I just threw caution to the wind and decided I was going to go on a bender!  I ate chocolate and smores, and a whole bunch of fun stuff.

IT WAS GLORIOUS!!!!  Breaking the rules was so much fun.

But the seizure sucked and I felt ashamed like I couldn't tell anyone, because my rules weren't a secret and people saw me break the rules. No one judged me. Friends have been great.

I got my levels checked again this morning. Last night was my last rule-breaking moment.  I'm back off the good stuff....tear. I have no idea why that has such an effect on me. I don't even think it's related to the medicine.

My friends have often described me as a "rule follower" sometimes I think it was good preparation. I don't know how I would have gotten through the last few months without that discipline. My doctor believes days without any of these rules are coming up, well because I asked. LOL. I just feel tied down, by medicine, and by my choices.

I still don't know how Gizmo managed to save himself through what - 3 movies?  2? I don't even remember. I just know that rule-following was very important and as a kid that message was received loud and clear. I was totally afraid of those gremlins and made sure to listen to the cautionary ending of that movie...

"Well, that's the story. So if your air conditioner goes on the fritz, or your washing machine blows up, or your video recorder conks out; before you call the repairman turn on all the lights, check all the closets and cupboards, look under all the beds, 'cause you never can tell; there just might be a gremlin in your house".

In all fairness, I may not be to blame, but these rules are all I have to cling to right now, they seem to be the only thing to making a difference.  I think everyone has rules or guidelines in their lives that keep them from becoming a "gremlin," I think we all get off course and struggle to find a way back, find a way to stay on track. Sometimes we lean on family or friends, we dig in and find strength to pick ourselves back up, or we rely on God for strength, knowing we can't do it alone. Sometimes we have to change the rules, modify them, work with them, I think the best thing we have are people in our lives where we can be our true selves once we've gone over the edge and need to find our way back. They understand us, forgive us, show us grace and understanding for breaking the rules. My husband and I have struggled to meet there in the past, but now he's the master of this. He understands how to hold my hand and lead me back to that place. My strength and his love and grace has helped keep me a mogwai. I wouldn't want to go through this journey without both of our learning and love.