Author: Shawn

These words of wisdom are courtesy of my grandfather Folke (for anyone who likes to read things out loud, it’s pronounced FOHL-kee), who built houses for many, many years. And sure, they say you’re supposed to measure twice and cut once. But sometimes it doesn’t matter whether you measure once, twice, seventeen times… sometimes after you cut, it just ain’t gonna fit, so you have to make it fit. That’s why he had a hammer that may have looked like a regular hammer, but if you could find a way to roll it straight, it could have doubled pretty well as a bowling ball.

And the words of wisdom came into my head earlier tonight because we were sitting in the loveseat watching TV when I realized I was having a seizure and wanted to get the little magnet off my belt loop to swipe over my head. Unfortunately, “we were sitting in the loveseat” entailed Teresa and me sitting next to each other with one dog by our feet and the other sleeping in my lap. I’m fully aware that he’s only about 10 pounds, but when those 10 pounds are strategically placed on top of the location you’re trying to reach and he has no intent on sitting up to make your life easier, you have to figure out something. I couldn’t exactly fling him to the side (if I did, that’d be just asking for a close encounter with the wrath of the dog mama sitting next to me…), so I tried to wriggle my hand underneath him to get to the carabiner hooked onto my belt loop.

For some reason, I couldn’t get the carabiner detached. I’m not sure if it wasn’t opening under the dog’s weight or if something on the belt loop was getting snagged, but it didn’t matter how much I tried to open the carabiner and remove it, that thing wasn’t going anywhere.

So I thought about Grandpa Folke and his policy about construction, then decided to apply that rule to my belt loop. I yanked it, heard the thread snap, then swiped the magnet over my head.

Honestly, I think that’s the first time I’ve intentionally damaged a pair of jeans before. I mean, when I was a teenager, if the legs were just a little too long, I’d end up just stepping on the back of the hem with my heels and it’d eventually start to fall apart, at which point I’d start tearing off the loose threads and it’d slowly form a divot in the back until I wasn’t stepping on them anymore. But they usually seem pretty much invincible. Wear them for a few weeks or until I spill something on them, wash them, repeat as necessary. Which meant I was shocked when I was getting ready to wash a pair of jeans and found that the seam going between my legs had torn wide open. Wide enough that I could fit my hand through the hole. So it was probably good that I wasn’t going out in public and practicing judo moves that I haven’t done in about 40 years.

Does this mean it’s just a matter of time before the thread holding the belt loop onto my jeans comes unraveled and starts flapping around in the wind if I don’t start tucking it under my belt? Maybe. But sometimes, extreme circumstances arise, you have to throw caution to the wind, and then you start snapping threads like a total badass. One thing I can promise you: this magnet isn’t heavy enough to knock down bowling pins. Plus if I tried rolling it down the alley, there’s a lot of metal stuff at the far end to attach to and I’d never see it again.

And before you ask, no, this doesn’t mean I don’t actually have epilepsy. Due the extent of my knowledge, all of the stories I’ve been telling are true. My first seizure was in 1991, I was diagnosed with epilepsy in 2000, and I had a doohickey named Sparky implanted in my noggin three weeks ago.

Imposter syndrome in this particular case is because of NEAM Days 1-10 and beyond. Because of 39 blog posts and counting. Because of a handful of videos posted on YouTube. And why?

Where did I get the nerve to think that what I have to write matters? That it’ll have any impact on anyone at all? Am I wasting your time and my time and anyone else’s time who stumbles upon something I’ve written or recorded? What gives me the right to get up on a soapbox and start preaching to people about epilepsy and how they should be more aware about it?

This isn’t the first time I’ve had this feeling of “Who do you think you are?” and I doubt it’ll be the last. Although generally not in the second person—I usually stick to first or third person… because that’s how Shawn rolls.

And then I thought about work this afternoon and the conference call that our department had using Zoom. Louie is one of our dogs and he likes sitting in our laps. He even likes sitting in my lap when I’m at my desk during a conference call, so I’ll usually hold him up a little higher so he’s on-screen with me, sometimes wave his paw at the camera, that sort of thing. (When people ask, I sometimes refer to Louie as my coworker. Someone once suggested that he’s the one doing all the work here… “Well, my name is on all the tax forms.”)

I use the webcam at the top of my laptop screen and it was angled up higher than usual, so Louie’s head was usually covered up by my name at the bottom of my screen. I guess I was moving him around enough that people could see his head pop up sometimes because someone left a comment in the chat about seeing Louie and seriously considering getting herself an emotional support animal. When the call was over, someone wrote to me on Zoom asking what Louie’s name was (the name at the bottom of the screen was just mine, not “Shawn & Louie”), then said it was really cute and she thought it was kinda cool that I’d hold him up so people can see him. I don’t remember exactly what I wrote back, but it was something to the extent of “If it can put a smile on one or two faces during the call, then it’s worth it.”

And there’s my answer. That’s right, I need to start asking for Louie’s help writing all of these blog posts! Wait… no, that wasn’t it. I mean, I’ll be the first to admit that some of the things I write are in no way smile-inducing. That said, if one or two people appreciate something that I’ve written or recorded—regardless of whether they leave a like or a comment or whatever—then it’s worth the effort. Maybe I’m not an expert. Maybe I’m not an authority figure. Maybe I’m just a plain ol’ dude. But I’m a plain ol’ dude who’s providing information and content that probably wouldn’t exist otherwise. And if its existence is useful or helpful or even possibly puts a smile on someone’s face, I think Louie would agree that it’s a good thing and I should keep doing it. Because that’s how Shawn rolls.

I was about to turn this entry into a lesson about economics, but compounding interest is something you can track: you’ve got the original amount, a compounding interest rate (earning interest on the interest as well as the original amount), and after a couple thousand years, your nickel investment turns into a billion dollars. That’s my get-rich-slow scheme and you’re all welcome to try it.

But when it comes to seizures, the only part of that equation that exists is time, so not really applicable. I also don’t know how everything builds up over time, I just know that it’s only happened maybe four times that I can recall.

Previously, there’s been talking involved, so it’s much more noticeable. When I’m having a seizure, my ability to comprehend language is pretty much nil. After maybe 30 seconds, words start making sense again. I might need prompting to remember what I was saying, but I can usually get back to my original line of thought pretty quickly. When these other rare instances have happened, though, it’s like seizures are flashing on and off and it can last for an hour or two.

It’s beyond frustrating to think that my seizure is ending, I can say maybe two sentences, then it starts all over again. And when that’s happening, it’s hard to say who’s more frustrated: me or the person I’m trying to talk to. Or when it happens back in 2019 when it happened during a script reading. Teresa and I had been cast together in a community theater play as a married couple—when the entire cast got together to read through the script for the first time, I was struggling to follow along in the script, then say whatever my line was supposed to be… I can only imagine what some of my castmates who were meeting me for the first time might have thought. “Is the guy illiterate? Is English not his first language?” (I think the next rehearsal was the only time I can remember people being relieved that I have epileptic seizures.)

But I was right at the end of writing yesterday’s blog post, my thought process was moving pretty smoothly, and then it was gone. I know I should have grabbed the magnet and swiped my head, but part of me kept thinking, “It’s almost over, so if I wait for too long after the seizure, it won’t make a very good bookmark.” So I just scrolled back a sentence or two, then tried reading what I’d just written, see if I could get back to the original thought process. That might have worked if the words started making sense again, but they didn’t. I tried going back another sentence and start reading again, but still nothing. I managed to get brief moments of clarity, but not long enough to get a strong grasp of what I’d been trying to write. And that went on for maybe 45 minutes and I barely managed to squeeze out the last few sentences just before midnight.

My thought at the time was that I should post it, then go back and fix it in the morning. And then when I got to this morning, I didn’t want to go back and read it again. Maybe just a sense of discomfort, not wanting to read what I eventually bumbled out of my head and onto the computer screen. I’m pretty sure it made sense, but under the circumstances, that’s nowhere close to a guarantee.

And given that we’re in the midst of NEAM, it seems more appropriate to leave it the way it was originally written. If it’s a bunch of gibberish, well, now a lot of people are aware of what having a long string of minor seizures back to back will do to my writing ability (or lack thereof, depending on who you ask). But if I can figure out a way to use those seizures to create another get-rich-slow scheme… I think I’ll keep this one for myself.

I’m writing off the cuff a bit tonight and don’t want anyone to think that I’m making fun of their religion. And even if I was, I doubt God would care (or any other religious entity, for that matter, but it’s a lot easier to write “God” without including the other “entity” stuff). Serious, God’s got a great sense of humor! He created the duck-billed platypus, the blue-footed boobie, and allowed Snooki from Jersey Shore to become a published author.

But I’m fully aware that people can take their religious beliefs very seriously. They can pray for blessings, good health, miracles, or preventing Snooki from publishing any more books. And it’s actually the second-to-last one that I wanted to address today.

Given the circumstances, it would have made sense for me to start folding my hands, bowing my head, and praying to anything that would listen to make my seizures go away. “Fix my epilepsy! Cure me of this affliction!” But I never have for two reasons.

The first is because I believe in the concept of “imperfectly perfect.” You may be able to conceive of something that’s ideal, something that’s flawless, something that’s perfect. And it only exists as a concept. Nothing is like that out in the real world. Nothing matches that ideal. Everything has flaws. But if everything is inherently flawed and God doesn’t make mistakes, what does that make us? Just the way we’re supposed to be. Perfect in the eyes of God. Imperfectly perfect. And who am I to want to mess with perfection?

Okay, I only believe that to an extent. There are things that are broken, things that can (and should) be fixed. When I someone kicked me in the knee during a soccer game, there was no question that I was going to have surgery to replace my torn ACL. On the other hand, even though my brain doesn’t function in the same way that an “ideal brain” should, it works the way it’s supposed to work.

And I think that’s the second part of the equation. It works the way it’s supposed to work. If people want to know more, I can tell them. If they don’t want to know more, I can tell them anyway. I’ve been writing about epilepsy awareness every day in November so far and while I’m hoping that I’ve positively impacted people’s ability to discuss it, I haven’t wanted to outsource the message. The easiest way for me to make people aware about epilepsy is to tell them myself. And aside from the fact that I like to think I’m a good storyteller, my case is one that doesn’t seem scary or horrifying… it feels like I can present the details in a factual, objective manner without triggering any strong emotional reactions. Would that be the case if my epilepsy was miraculously cured? I have no idea. But if I keep writing about this for a long enough period of time, maybe God will have enough of a sense of humor to make me a published author, too.

The company I work for is based in California and a lot of us work remotely. As a way to stay connected and get to know our coworkers, they have a thing called “Community Chat” for 30 minutes on the first Friday of every month. People call in on Zoom and they’re broken into smaller chat rooms at random, so even if there are dozens of people participating, each chat room will have 5-6 people in it to make it easier to have a conversation.

The subject of the conversation? Whatever the heck we want. We could talk about pets, kids, weekend plans, significant recent events… it’s completely up in the air. One of the other five people in my room yesterday is also someone who knows about all of my recent health news, so I asked him if he thought I should mention “it” when someone asked about significant events. He didn’t care, so I told everyone that I had brain surgery 2 1/2 weeks ago.

I probably could have talked for the full half hour at that point. I explained that I had an RNS device implanted and described the general idea of what it was supposed to do. Since we were on a Zoom call, I leaned my head toward the camera on my laptop so they could see my scars. Overall, I only talked for maybe five minutes before the subject changed to people’s kids and how someone’s daughter was 10 years old and thought that the tooth fairy should give her ten bucks for each tooth.

They thought that what I told them was interesting, but no one blurted out, “Oh my God, brain surgery because you have epilepsy? How do you get out of bed every morning?” Instead, we just moved on to another interesting topic: someone was planning on traveling to London and see an Arsenal game (a soccer team that plays in the English Premier League), but he was thinking of canceling the trip because he was going to be a father soon. And by “soon,” I mean in March. “That’s plenty of time to fly to London for the game and get home!”

We’re all the main character in our own stories. The details of those stories are HUGE in our own minds. Other people? They’re the main character in their own stories and what we have to say isn’t nearly as significant to them than to ourselves. Tell people you have epilepsy and odds are good that some of them will get nervous, worried, and possibly run out of the room like their hair was on fire. I can’t speak for the odds about people who will be curious, understanding, and possibly want to provide you with comfort and support, but I can guarantee that the number is higher than zero. And then there are people who fit somewhere in the middle of those two extremes. People who don’t care about the fact that you have epilepsy and are waiting for you to finish talking so they can start telling their own story. There’s only room for one main character in their story and you ain’t it. And as long as they’re not running out of the room because you set their hair on fire, you may have a bit part and having epilepsy doesn’t change the fact that you fit into the background just fine.

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.

That’s been the reason for medication hopping in the past; it’s the reason for undergoing brain surgery now.

I don’t have my medical records in front of me, but I think I had tried four or five different individual medications that had failed to prevent the blackout-style seizures that I was having from 1999-2001. (My epileptologist at the time, Dr. Gates, once asked if having them only once every two months was an acceptable goal for the meds I was taking. Ummm… no.) I don’t think how he’d decide the next one to try was completely random, but it kinda felt like it at times.

Then the non-random next step was spending a week and a half in the epilepsy ward at United Hospital with a bunch of electrodes glued to my head. (I was there on New Year’s Eve, 2001—one of the highlights of my time in the hospital was a group of people who came through singing Christmas carols that night.) The data we gathered from that led to a combination of lamictal and depakote, which resulted in zero seizures for close to 15 years.

It was the first time that I’d taken more than a single medication. After I started having seizures again, it felt like we went back to medication hopping, usually taking three at a time (plus a fourth that wasn’t effective prior to 2002, but now I take it for restless leg syndrome because Teresa doesn’t like getting kicked in the middle of the night). And it wasn’t just additional medications. I started taking additional doses as well: taking them midday as well as morning and night.

I want to take a moment to acknowledge the fact that some people have to take even more medications more frequently to prevent seizures, which can cause additional side-effects. My older brother is a nurse and I think he’s the one who told me that taking eight medications will guarantee a reaction between at least two of them, which could require additional medications to counteract that reaction… I don’t envy the people who need to buy industrial-size pill cases to hold everything that constitutes their daily medication regimen.

Moreover, some of those people have to take different meds at specific times. When recovering from knee surgery, I could take a certain amount of ibuprofen every six hours, so I set alarms on my phone to make sure I wouldn’t forget. Thankfully, my current medications don’t require that specific length of time between doses, but that can also been a problem: I have an alarm to remind me to take my midday meds that I’ll sometimes turn off and immediately forget to take them, which kinda defeats the purpose of setting an alarm.

Missing a dose can frequently lead to having seizures the following day or maybe a day later. That said, I’ve turned off the alarm and missed that midday dose three times over the last two weeks. And I think it’s led to additional seizures once. Well, once so far… the third time was yesterday. Any negative results are yet to be determined.

Which means I’m currently a little worried that the RNS device is already in active mode and preventing any negative results. And I’m worried because of that’s the case, if the computer isn’t gathering data for six weeks as intended, will it be as effective over the long term? Or maybe it’s because after surgery, the threat of an active RNS device has cowed my brain into submission. Even with all of the scans and all of the data we’ve gathered over the years, treatment options are guesswork to some extent. And I guess what’s currently happening is good? I mean, even if I can’t understand why, I really shouldn’t complain about attaining the optimal result of zero seizures.

Sadly, there wasn’t anyone in the neurology office who could take a video of the staple-removing process, so maybe letting me keep these was some sort of consolation prize? So here are pictures of my head after getting home from surgery and then after the doctor removed the staples.

The doctor initially asked how I was feeling, I said I was fine, and she was a little surprised. I guess a lot of people who come into the office at this point in the process are dealing with headaches, things like that. She also added that she was surprised how long my hair was after just two weeks of having it buzzed down to barely more than stubble. Given that information, the scars could be almost entirely concealed by the time they switch the computer to active mode in December. (I’m hoping that it’ll be a simple process and they won’t need to buzz all of my hair off a third time.)

Things I’ve learned since this afternoon: when uploading seizure data to the cloud, it was easier to figure out where to place the wand against my head when I could just line it up to the edge of the staples. Ever since I was a kid, I’ve had the terrible habit of picking at scabs before they’re fully healed and that habit apparently applies to scabs on the top of my head as well. And when a doctor says no one can take a video of her removing the staples from your head because the only other person in the office is at the front desk and she’s not supposed to leave there, it’s not a guarantee that she’ll be at the front desk when you leave said office.

A handful of people told me “You should be Frankenstein’s monster for Halloween! You’re already, like, halfway there!”

It’s true, part of my costume would have been preinstalled. But that may have been the only benefit to having staples in my head. (Well, that plus the fact that they’re doing an excellent job of holding the skin on my head together.)

Consider: I live in Minnesota. When I woke up this morning, it was 35 degrees outside. My head currently has very little hair and pieces of metal in it, which means my head has minimal insulation and pieces of metal that suck the heat out of my scalp when exposed to low temps and cold breezes. There’s no way I would have gone trick-or-treating without wearing something to keep my head warm, thus covering up what would make my costume already, like, halfway there!

And cold weather isn’t the only reason why I’m looking forward to having these staples removed. Using the wand that uploads seizure data into the cloud requires putting pressure on those staples against my scalp. I have some over-ear headphones that are currently sitting in the closet because they squeeze against my head that has metal pieces in it and almost no cushioning. I also have sleep apnea and the straps on my CPAP press against the staples on both the top and side of my head all night long.

Are these first-world problems? Perhaps. Are they really problems? Perhaps not. But we all have our struggles in life and one of mine involved not bowing to peer pressure even though my costume was already, like, halfway there!

When I first got that magnet from NeuroPace to use with my RNS device during this “read-only” phase, it seemed like the best way to have it accessible whenever I’m having a seizure would be to attach the carabiner to the belt loop of my jeans. Open the carabiner, pull it off while still looped in the hole of the magnet, swipe it over my head, put it back on the belt loop, repeat as necessary. The biggest downside?

Finding out all the different things in the house that are magnetic.

Some aren’t surprising: the washing machine and dryer, the refrigerator, the hood of the car, the lamp on my bedside table… get my belt loop a little too close and there’s a loud CLINK! to remind me.

Then earlier tonight, I decided to switch the carabiner from the belt loop in the front of my jeans to the one on my right hip. (It’s easier to grab it if I’m seated plus it doesn’t get attached to the button on the front of my jeans when I’m sitting on the toilet.) The large CLANK! that spooked Teresa on a different floor of the house is how I discovered that the door to our garage has a metal core.

As for the title of this blog post, well, it’s a lie. Washing my hands in the kitchen sink earns me the aforementioned clink as well. I suppose I should be grateful: if the staples in my head were made of a different kind of metal, swiping the magnet could lead to a number of new dents in my head to go along with my surgical scars.