I'm kind of a medical mystery.
Publish date:
May 16, 2013

Seeing "Iron Man 3" probably wasn't the smartest thing I did that day.

I hadn't been sleeping well, due to a number of projects hanging ominously in the air. I'd been a bundle of anxiety for about a week, and I kept forgetting to eat. If I'd been in my right mind, I would have realized that I was ticking time bomb.

Going into the movie, I felt OK. A little dull -- like I was moving through soup.

To my husband's credit, he's like one of those helper labradors that can sense when their owner is going to have a seizure. (I don't have seizures…not really, more on that later). He kept squeezing my hand and asking me if it was a good idea that we were at the theater. I assured him that I was just tired and that I was just really relieved to be doing something mindless.

But every time I sort of slowed down for a second to search through the foggy recesses of my brain to find a simple word like, "seat" or "butter," I could feel his spidey-senses tingling and that look of "Something's up" cross his face. Before the movie started, he asked me one last time if I was okay and I wanted to stay. I said yes.

If you haven't seen "Iron Man 3" or really "Iron Man" movies, prepare yourself for a spoiler alert: lots of shit blows up.

It's loud, it's bright, it's fast, Robert Downey Jr. and friends zip around in metal suits and it's generally a feast for the senses. Normally I'm down to sidle up for second helpings, but this time something was wrong.

As the movie progressed, I could feel myself getting more agitated. I don't know if other people who have such "episodes" feel this way, but I felt like every inch of me had Restless Leg Syndrome, while the dullness behind my eyes, and in my brain began to get "soupier." I'm not sure if I'm explaining this entirely accurately, but I often know an episode is coming when my brain feels like it's "itching."

When the movie ended and the crowd-pleasing easter egg (yes there is one, stay til after the credits, y'all) was over, we got up to exit the theater. By this time, something definitely felt wrong, and I just prayed that I'd make it to the car before my body betrayed me.

As we pushed our way through the throng of people, my nails were digging into my husband's hand. The world was starting to feel a little unstable.

I actually thought I might be having a panic attack, but when we got outside the doors of the theater everything sort of went blank.

For a second I lost my balance. It was like I was seeing things through a video camera, and the Blair Witch or the Cloverfield monster had smacked it out of my hand.

Then everything was kind of slow and disjointed. I was aware I was "there" but it was like I wasn't in my body. I don't really remember about a minute of time. My husband was holding me up, he said my head kept twitching.

The worst was coming out of it -- all the thoughts and sensations and nerves rushing back all at once. In my mind I was saying, "I'm OK, I'm OK, can we please go?" but what my husband said actually came out of my mouth was a jumble of slurred words punctuated by random laughter.

The worst was that I looked around and saw that people had noticed what was going on. Some people stared, others tried not to stare. There was a wide berth around us where people slowly walked by. I felt like a medical mysteries side show. My poor friend looked so scared, she sweetly put a reassuring hand on my shoulder. My husband was so seemingly calm. I was so embarrassed.

As I started to get my bearings more, I could feel the tears starting to well up. More than anything I felt sorry for my husband and my friend. My husband says that when these episodes happen, it looks like all the life drains out of my face and my eyes look "unseeing." That descriptions scares me, I can't imagine what it must be like to see your friend or wife get all zombie-like.

Disoriented, mortified, teary and intermittently laughing uncontrollably (this is one of the more disconcerting side effects), we made our way back to the car where I kept trying to apologize to everyone. That was the first time this had ever happened at a movie.

I went home and calmed myself, ate a little something and got a good night's sleep. By the next morning I felt almost normal, still a little soupy, but much less unglued. I made it a point to eat meals that day and get six hours of sleep that night (six hours is my optimal sleep time, 8 hours and I feel "overslept.")

So I have these "seizure-like" episodes.

I say "seizure-like" episodes because I'm not sure if the word "seizure" is accurate. I've been to some of the best neurologists, Epilepsy specialists and psychiatrists around, but nobody can figure out what's quite wrong with me. I'm kind of a medical mystery.

These episodes started happening almost three years ago and while I've become better at thwarting them and recognizing the conditions under which they occur (stress, lack of sleep, not eating, bright flashing lights, generally not taking care of myself), I still cannot fully get rid of them.

Epilepsy has been tossed around in trying to diagnose me, but I do not fit all the criteria. There's a test that I still need to undergo, I forgot what it's called but it has something to do with checking into a hospital for a week and having my brain monitored while doctors try to make me have a seizure.

I haven't done this test yet for a variety of reasons, but mostly because I'm scared. Scared not only of being alone in a hospital for a week while being subjected to seizure-causing stimuli, but even more scared that nothing will happen, they won't find anything.

Then where will I be?

If everything tests "inconclusive" again, will I be a medical mystery forever? Will I ever be able to put a name or cause to my episodes? Or will I be forever having to explain to people, "Well, I don't have Epilepsy, but I sort of have these 'episodes' that seem like seizures, but we're not SURE, if they're seizures, but it's kind of like my brain reboots? Or something? Yes, I've been to doctors…no, it's not 'just stress'…no, I'm not on drugs."

The hardest part, aside from the whole "zombie Louise twitching" stuff, is that it is a total loss of control. More than anything, when I feel an episode coming on, the dread that fills me has to do with the fact that for a few minutes, I will not be myself, and I will be at the mercy of some unknown boogeyman lurking in my brain. I know he's there, but I can't fight him, I can only hope he leaves quickly.

I've built so much of my life on an image. The image of the capable, strong, witty, independent woman whom people lean on, not the other way around. I can take care of myself and can take care of you too.

But when an episode hits I am reduced to a person who needs one thing: help.

This terrifies me.

Thoughts of like, "What do they think of me? How will anybody ever be able to depend on me now? Do they think there's something wrong with my mind? Will they be afraid to be around me? Do I gross them out? Will they ever be able to unsee my slurring, blabbering mess of a self?" I really need to give people more credit, but in the moment I can only think of the worst.

As silly as it sounds, I treat my "condition" as a secret -- a secret that everybody knows, but nobody talks about. There's something purgative, and hopeful about beaming this out to the interweb for everyone to see. No shame, no self-judgment, just how things are. Maybe even some of you will read this and say, "Me too!"

So I share this with you, xoJaners, because I share all my "weirdo" body things with you, and this is the most "weirdo" of them all.

This is me, whether I like it or not.