NEAM, Day 7: My brain works like an Etch A Sketch

I considered trying to write this yesterday so I could have something written every day this month, but by the time I was sitting down with my laptop, I would have had maybe an hour and a half left and it’ll likely take longer than that to situate my thoughts under the circumstances. And not just because my brain works like an Etch A Sketch.

I doubt this is a universal problem for people with epilepsy, but it’s definitely not exclusively a Shawn problem. The issue is that my long-term memory is… it’s bad. Maybe not to the point of shaking my head and I suddenly can’t remember my brothers’ names, but it’s bad enough that I’m actively self-conscious about it.

It wouldn’t surprise me if the problem is medication-related, especially given that back when we were medication hopping before my first stint in the epilepsy ward, the doctor would pick one, then increase the dosage until determining that it wasn’t going to prevent my seizures, at which point we’d taper off that medication and start up a different kind. I think trileptal was the one that we increased until I was taking toxic levels, but the doctor said I was a pretty big guy, so I should be okay.

Or it could have been after my first grand mal seizure. The doctors said that a person can have a single one and that’s it, but they gave me a prescription for dilantin as a precautionary measure. That stuff might work for other people, but I hate it with a passion. It was difficult for me to focus when I started taking it, I had trouble doing homework for longer than 10 or 15 minutes at a time… this happened on September 30th of my freshman year in high school, which isn’t the best way to start the school year. My grades dropped and some advance-level classes simply weren’t an option over time. Consider these factoids:

• I was on the math team in 7th and 8th grade (our team placed 3rd in state that first year)
• I coasted through algebra as a freshman because I learned it on the math team, but by the time my teammates were taking calculus senior year, I couldn’t do it: I took Art of Math and Computer Math instead

But aside from classes and grades, I simply don’t remember much about high school and college. There are some things that managed to lock themselves somewhere in the back of my mind, but a lot of it? I’d say “it’s gone,” but that’s assuming I was able to remember it in the first place. I kept a journal for a little while in high school—when I flip through the pages, I could easily be reading someone else’s biography.

As a result, I’ve only been to two reunions: high school in 2005 and college in 2009 (someone worked pretty hard to convince me to attend the latter or I would have skipped that one, too). One of the downsides for me being on Beauty and the Geek in 2005 is that people wanted to talk to their classmate who’s a vaguely recognizable reality TV show participant.

In my mind, the scariest two words of the English language during those reunions were “Remember when…?” Because the answer was almost guaranteed to be “No. No, I don’t remember.” And why expose myself to that emotional stress? Much easier to just hide in the basement as each reunion comes and goes and now I haven’t seen anyone from any level of school in decades. Okay, “decades” for high school and law school; about a decade and a half for college and grad school. (Yes, that’s right, I can wallpaper one of the walls in my bedroom with all of my degrees.)

And now that I just missed my 30-year reunion for high school, it occurred to me that I’ve been cutting myself off at the proverbial knees. If I walked into a room with a bunch of old classmates, what’s the likelihood that anyone will utter the words “Remember when” and follow that with something that happened over 30 years ago? That fear of exposure, of not being able to remember, of having an Etch A Sketch brain has kept me isolated beyond a very tiny circle of family and friends. Maybe I won’t be able to talk about “the good ol’ days,” but is hiding in the basement really a better option?

Human beings are social creatures. We’re not meant to exist in isolation. The pictures in a person’s life story shouldn’t be nothing but selfies.

That’s one reason why I appreciate EFMN and their monthly calendar. There are a number of recurring events and social gatherings for people with epilepsy, kids with epilepsy, partners of people with epilepsy… a lot of people.(I’m sure that the Epilepsy Foundation in other states have similar events as well.) I don’t think there are specific rules about uttering the words “Remember when,” but no one there will have any expectations in that regard. I’d say that the most important thing is to bring your smiling face, but sometimes, you don’t feel like smiling. That’s okay, too. The actual most important thing is to show up (in person or virtually) and interact instead of isolate. Or just show up instead of isolating. Having epilepsy isn’t a reason to hide from the world.

But like a lot of things in life, it’s really easy for me to say that. You actually doing it? Maybe not as easy. Which means we may be back to epilepsy awareness and walking the fine line between helping someone to leave their basement versus dragging them out kicking and screaming. I wish I had a good answer about how to walk that fine line, but I don’t. Just remember that if someone whose brain works like an Etch A Sketch might start forgetting things whenever there’s kicking and screaming involved.

… I finished writing this in the wee hours of last night/this morning and wanted to wait until I wasn’t holding my eyelids open with toothpicks before posting it. I thought about it more and realized that some people don’t isolate because they have difficulty remembering things. If someone feels stuck in the basement because of physical symptoms caused by their seizures, I get it. And I’m not writing that just to create an emotional bond with a larger percentage of the people reading this.

During that first stay in the epilepsy ward, they let me wear soccer shorts instead of being stuck in a hospital gown all the time. Maybe rules were a little more lax back then, I don’t know. What I do know is that my head was feeling kinda fuzzy when I woke up on the morning of January 2nd. What I didn’t realize right away was that my clothes had changed since going to bed. Instead of my shorts, I was wearing a hospital gown. They explained to me that I woke up, immediately had a massive grand mal seizure (no meds, stress, and sleep deprivation can have that effect on a person), then pointed to the corner of the room where my soccer shorts were soaked in urine. Full bladder, all of my muscles clenching… you can imagine the result.

So I get it. Very few people want to walk around in public wearing clothes that smell like pee. But technology allows us to attend virtual gatherings. We can call friends and family on the phone. There are people who don’t care what you smell like because they understand. Hiding in the basement and cutting off ties with the world because you’re ashamed, you’re embarrassed, you shook your head too hard and can’t remember how the doorknob works anymore… I can’t recommend highly enough that you get past those concerns and find some way to be part of the world again, even if it’s just a tiny bit. You all have something to offer whether you realize it or not, but people may not be aware of that until you show them.