My "Sea Monster" Is Broken

Dear Uncle George,

I have been meaning to talk to you about this.  But I forgot.

I don't speak of it in public often.  Those who are close to me know that I still battle it, regularly, but overall, you would not know.  But since this is part of my story that impacts my life, you should know it, too.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I have epilepsy.  And it sucks.

I was not born with a seizure disorder.  It showed up when I was 38.  At first, it was passing out.  Then it was passing out with elevation changes (getting out of an elevator).  I had three concussions in 9 months.

I saw 8 neurologists in the city.  I took at 5 day seizure test.  The results of that test is that the neurologist who administered it to me said that I was essentially nuts.  He was an ass--and there is worse names for him I am sure, but I am a good Mormon girl and I don't know them.  :)

It took almost two years to figure out but  I have Catamenial Epilepsy.  It is hormonal imbalance which for me, impacts my cerebral cortex....which controls my speech.  My movement.  And to add insult to injury, those hundreds of seizures has impacted my hippo campus-- (Latin for sea monster.)

Freaky likeness, huh?!

The worse part of my brain problems is now the way my short-term memory works.

Better yet, doesn't work.

I used to have a pretty stellar memory.  At one period in my life, I could remember the goings on and calendar of 8 different peoples lives.  Without a calendar.

Now, I am unable to recall most things in my short term memory.  Especially conversations.  My family is so sick of me repeating things, not remembering talking points, forgetting daily life, that I am sure they ready to put me out to pasture (Missouri talk).  They are never going to be as sick of it as I am.

The bad thing about losing my memory skills is that I haven't lost enough to not know I am losing it.  And it makes me sad.  It brings commotion to my brain and my heart, for sure.

I have never been a super great speller, but now...especially at night, when I am tired, it is horrible.=.  As the years go on, my ability to spell and punctuate correctly is getting noticeably worse.  To the point where it is not just "Oh, she's a bad speller" anymore.  I just can't remember how to spell words.   Even little words.  It makes me feel dumb.  Inferior.

I have a university degree, for pete's sake, that I paid a butt load of money for.  And I feel like a second class citizen in my heart.

The physical symptoms are not only scary to see I am sure, but scarier to be in them.  I have had 8 grand mals (one about a month ago that lasted 40 minutes).  I have had hundreds of petites.

When I have a seizure, it begins with a tingling in the back of my head, inside my brain.  It travels up to the top.  Then I can feel myself start to clench my jaws.  I feel like my vision is narrowing and I feel like my body is melting into the earth into a puddle.  I stiffen and I cannot look at you or speak.  I have to put my head down...I think it is some sort of subconscious embarrassment to be looked at.  I feel as though I am trapped in my body and I cannot escape.

But most importantly, for my peace of mind,  I have to hold someone's hand.

Nothing says "Happy Birthday Val"
like a seizure and bag on your face...

who took this picture, anyway?

When I am in seizure, I can hear everything and am conscious the whole time.  I can recall everything that is said around me.  Strange, since I can barely tell you what I did yesterday.  Even though I know and can hear that everyone knows I am having a seizure, I am afraid.

I am afraid that I will not come back from "that one."  That I will be trapped, permanently.  But by holding someone's hand, it tells me that they know where I am and that will not forgot to get me help if I do get trapped.  It makes no sense in my sea monster brain, but it makes sense in my heart.

Metallica, several years ago, made a music video called "One."  It is based off a movie from 1971 about a man who blows up in a war from a land mine.  He loses basically everything of his body, except his mind.  He suffers from what is called Locked-In Syndrome, where the brain is functional but the body is not or cannot be.  While this syndrome is used to define a permanent disability, I feel like when I am seizing, I am living it momentarily, as well.

My brother loves Metallica.

This is when James, on the right, got his hair cut.  

They are family men now.

As we used to say in the art museum I was a tour guide for, what is the "so what" of all this?  Why am I choosing to share this with you, here?

Because I am happy.  I know that I have taken advantage of some pretty amazing opportunities that have come my way in this life.   And I have had the health to do them.  

I am happy because despite how much I may sound like an idiot on what can be any given day, my family and those close to me still try to exercise patience for the changes that have come to me.

I am happy because I am loved.  By some really great people on this planet.

I know I tend to write light-hearted and fun.  But in all seriousness, I want to testify that there is a loving Heavenly Father who truly has sustained me.  I know that some may feel that if He were really loving, I would not have an illness at all.  Or I would be miraculously healed.

Life is hard.  Things break.  

So in my mind, it is just some broken chemistry.  Literally.  :)  

Lvoe, (just kidding)

Valsy