Category: Epilepsy

I was trying to think of a good song lyric for the title of this post and the first thing that popped into my head was “One is the loneliest number” (written by Harry Nilsson, made popular by Three Dog Night), but I settled on a line from “Sometimes You Can’t Make It On Your Own” by U2.

Tonight, I spent an hour on a Zoom call with EFMN’s Adult Connect group. A bunch of people with epilepsy get on a call once a month and… be people. With epilepsy.

I honestly can’t imagine what my life would be life if I didn’t have a supportive community around me. Family and friends who know I have epilepsy and it doesn’t phase them. When I couldn’t drive, they could give me a ride to run simple errands. When I’m having a seizure, they’ll wait until I’m able to start talking again. When I’m struggling (physically, mentally, emotionally), I have a lot of people capable of helping to lift me up. Or lift up heavy things when I’m not supposed to carry more than 10 pounds.

I might be capable of being fully independent, but why? Why spend all my time feeling alone and miserable? Even if that Zoom call is full of people’s struggles and frustrations, there’s still a feeling of connection, of togetherness. Being part of a community that can relate to me (and I can relate to them) is more valuable than I can say. “You don’t have to go it alone.”

Seizures are going to happen.

There are exceptions to this rule. It’s possible to have a single seizure in your life, none after that. Some people outgrow their seizures. Finding the right medications or surgery can prevent them from happening in the future. But again, these are the exceptions.

Seizures are going to happen.

But you don’t know when. It might be a minute from now, an hour, a day, a year… even when I was in the hospital, they took me off my meds, then went through sleep deprivation, there was never a guarantee about when I might have a seizure (or the type of seizure it might be when it did eventually happen).

And it’s important to take precautions to some degree. Don’t drive if your seizures cause you to lose consciousness. Take your prescribed medications. Tell people when they can do if you have a seizure (if you collapse, lay you on your side, keep things out of your mouth, etc.). Stay safe.

But don’t take safety to such an extreme degree that you forget to enjoy each day as it comes. There are places people live that can have natural disasters, but if there might be an earthquake, people don’t spend their days running from door frame to door frame. If there could be a tornado, people don’t live in tubs in the bathroom. If a hurricane might come one day, LEAVE FLORIDA NOW. Wait… no, the opposite of that. Don’t live in fear and suck all the joy out of life.

There’s no way to guarantee that bad things won’t happen and that’s fine. Bad things have happened in the past and they’ll happen in the future. You can learn from the past and plan for the future, but each day only happens once, so enjoy it while it’s here. Live for today.

I thought about calling it “status update,” but it’s not really an update if there’s no new information.

Brain surgery to implant the RNS device was October 22nd. One month later, I’m still having seizures (which was expected), I’m still feeling pretty good (also expected), and if we haven’t maxed out our insurance deductible for the year yet (as would be expected), we should be pretty dang close. All and all, the one-month status report is good and I’m hoping it stays that way for many, many months to come. I may not have as many interesting stories to tell that way, but it’s a sacrifice I’m willing to make.

Today was Friday, but even though it wasn’t the day after Thanksgiving, I decided to take the day off from work. That led to me thinking about… a lot of things about brain surgery.

A long, long time ago, I was one of those people who had extremely limited information about epilepsy. I knew about one type of epileptic seizure (grand mal seizures) and one type of brain surgery (resection). Thus, part of the reason why I appreciate National Epilepsy Awareness Month and why I try to share some of that awareness with others.

I’m extremely glad that I now know there’s a wider spectrum of both seizures and surgeries. I’m glad that of all the seizures I’ve had, only three out of how many hundreds over the last 34 years have been grand mal seizures. As for surgeries, the neurosurgeon told me that resection is the most effective kind: if you remove the brain tissue where the seizures start, no more seizures! But that doesn’t make it the best kind, especially for me.

My seizures primarily affect the language center of my brain. Removing a chunk of my brain in that area might eliminate seizures, but removing a chunk of the language center of my brain would have other effects as well. Most likely severely negative effects.

I know I talked about it when building up toward surgery. If I started struggling to remember words all the time, I wouldn’t be nearly as good at telling stories. I certainly wouldn’t be able to write all these blog entries. And I wouldn’t have taken today off from work because it’s extremely unlikely that I’d be capable of being a proofreader anymore.

So I’m glad that my limited knowledge wasn’t accurate. There are more than 40 types of seizures and most of mine haven’t been the grand mal variety. There are multiple kinds of brain surgery that involve implanting something into the body rather than removing something. Getting an RNS device means I can still tell good stories, I can still write blog entries, and I can still take a day off from work. Which is good, because most employers don’t appreciate you taking a long nap in the middle of the afternoon.

I got on Facebook earlier this evening, started scrolling through my feed, and saw a bunch of stuff about epilepsy. I decided to check out some of those pages—given that this is NEAM, some have put out a high volume of images providing information (and thus creating awareness) about epilepsy. Take this one, for example:

Those are some severe-looking symptoms… and how many do I suffer from?

ZERO.

So this isn’t suffering from imposter syndrome or feeling like a fraud. I’m not claiming to be an amputee after losing a pinkie toe to frostbite. I’m not a 15-year-old kid trying to buy dirty magazines at the local gas station. I’m not a dude holding a leadership position with Mothers Against Drunk Driving.

I’m legit, I have epilepsy. (I didn’t get Sparky installed in my head just for kicks and giggles.) But the symptoms I deal with are so minor that it feels like some of the things I’ve written may be minimizing the impact that epilepsy can have on some people’s lives. “Do this, it’s a piece of cake!”

I take medications three times a day and I set an alarm around 3:00 to remind me to take the midday dose. Some days, I turn off the alarm and forget to take my meds until bedtime and I don’t want to double up the dosage at that point. The consequences? Sometimes there aren’t any. Meanwhile, there are others who set multiple alarms and if they don’t take their pills at the same time every day, the inside of their head turns into a giant electrical storm.

So I want to acknowledge that I’ve been extremely fortunate during my epilepsy journey. As such, the level of awareness about epilepsy that I can provide may not be the highest or more thorough, but in my defense, it’s not like I’m trying to become a card-carrying member of MADD.

I got an email from the Epilepsy Foundation of Minnesota earlier this month to tell me about their Day of Advocacy, which is in April instead of November for some reason… maybe that’s the day when all the special interest groups come out to advocate for themselves and try to convince their legislators that the state’s money would be better served with us!

But on the Advocacy page of the EFMN website, you can scroll down to the Resources section where it describes a Telling Your Story app like this: “The Minnesota Governor’s Council on Disabilities has a free tool for advocates to compose and practice their story. The app guides users through the steps, from introducing yourself to identifying the specific issue, to the best methods for presenting a compelling story.”

I haven’t looked at the app myself, but it sounds interesting. It also sounds like something I’d never be able to use. I might be able to identify a specific issue quickly, but introducing myself? Presenting a compelling story? If you’ve been reading some of the blog posts on here, you’ll know that odds are pretty good that the legislator’s office would shut down for the night before I finished talking.

According to Merriam-Webster, disabled is defined as “impaired or limited by a physical, mental, cognitive, or developmental condition.” I can only speak for myself, but the only reason I feel impaired or limited at the moment is because of doctor’s orders.

The after-hospital notes say that I wasn’t supposed to lift more than 5-10 pounds (about a full jug of milk). I got that note after surgery for SEEG testing and after getting Sparky implanted. We have a dog who’s 15 years old and can’t get up and down the stairs on his own. He weighs 18 pounds. After SEEG testing, I was carrying him on the stairs after about two days. After getting Sparky, it was about a week.

Surgery was four weeks ago… I feel fine! Sure, I probably deserved a severe finger wagging after carrying a box holding a bunch of cans of dog food up the stairs yesterday, but I feel fine! I think if I was feeling injured or sick or miserable or something, it’d be much more difficult to forget some of those after-hospital notes.

I may be misremembering the details—it’s probably been 25-30 years since I saw the movie—but I keep thinking about One Flew Over the Cuckoo’s Nest starring Jack Nicholson. What I remember is that it takes place in a mental institution. The mental patients are treated like mental patients, so that’s how they behave. When Jack starts treating them like normal people, guess how they start behaving? Like normal people!

And it feels like the line between “abled” and “disabled” is really thin and wavy, not nearly as concrete as the language might make it seem. I don’t feel impaired or limited while carrying my dog up and down the stairs. While writing blog entries. While acting like a human being. So am I truly disabled? Or are we just debating semantics?

Here’s what I suggest: find someone who has epilepsy, treat them like a normal person, then see how their behavior compares to other “normal people.” But if you find that person, decide ahead of time that they’re disabled, then treat them like they’re disabled, there’s nothing they’ll be able to do to change your mind or your behavior.

In this context, it’s short for “search engine optimization” and the blog keeps reminding me that my SEO rankings are probably two steps below wretched. I just Googled “Shawn Bakken” epilepsy and this website came up 7th on the list, which I wouldn’t have minded as much if my YouTube page hadn’t been 5th.

So I’m taking a little SEO for Beginners course because one of the best ways to make people aware about epilepsy… well, they can’t become aware of something that they can’t find. I don’t know how effective it’ll be—the odds of claiming the top spot from a blog that has about 16 years of content isn’t likely—but leapfrogging my YouTube page would be a good start.

[I was looking at my memories page on Facebook today and found something that I wrote back in 2018. I’ve taken a lot of different medications that didn’t work since then and I certainly never expected to have brain surgery at that point, but if you put my outdated personal history with epilepsy aside… hopefully, you’ll enjoy reading it as much as I did.]

I see an ad on Facebook occasionally from the Epilepsy Foundation of Minnesota and onein26.org. A few days ago, someone left a comment there lamenting the fact that if someone has cancer, heart problems or diabetes, people want to help out. When they hear “epilepsy” or “seizures”, it’s “RUN FOR THE HILLS!” (Okay, maybe not that bad, but it’s certainly not the same level of empathy.)

I can understand why, really. Epilepsy and seizures are kinda scary. You can be having a conversation with someone, then suddenly, they collapse onto the floor, flopping around like a fish and knocking lamps off the tables. And a lot of times, that’s the only thing they know when they hear “seizure”. Not many people realize that there are over forty kinds of seizures and they only know about one of ’em.

What’s more, there’s nothing concrete about it. You can’t just point your finger at something and say, “That’s epilepsy, here’s how to fix it.” If someone has cancer, “There’s the tumor, time for chemo and radiation.” Heart disease? “There’s the blockage, time for bypass surgery.” Diabetes? “Good God, man, start drinking coffee with your sugar!” And then there’s epilepsy.

About 60% of the time, doctors can’t find a cause. It just happens. Everything is fine, then you have a seizure. And more than half the time, you also have a lot of unanswerable questions. I’ve had a handful of MRIs done on my head and my brain looks quite healthy, thank you very much. We don’t know why my left temporal lobe sometimes acts like an 8-year-old after stealing his father’s coffee mug filled with sugar, but it does.

Look at it this way: with all of the gajillions of neurons in the brain, it’s like a network of all of the computers in the United States. Everything runs smoothly, all of the computers function as a single unit to perform all of the necessary functions and it doesn’t matter that 2/3 of them are constantly surfing for porn on the Internet.

And then one day, when everything is running smoothly, there’s one bad batch of code in New Jersey. Just a few ones and zeros in the wrong order and there’s an instant chain reaction that shoots through the entire network and all of those smoothly-running computers are now stuck on the blue screen of death for thirty seconds. And then it stops, the computers all reboot and everything is running smoothly again.

Obviously, this isn’t how all seizures happen or how much of the brain they affect. Sometimes it’s a nation-wide disaster scenario. Sometimes it makes the monitor screens in a small neighborhood flutter for a few seconds. Sometimes it’s a massive blackout across the entire state of New Jersey. All because of one bad batch of code that repeats itself from time to time… but no one knows when it’ll happen or how often.

How do you treat epilepsy? It might go away on its own, but a lot of people take medication. Types and quantities vary, side effects vary and success rates vary as well. I think I’ve been on… eight different meds at different times. There were two that kept me seizure-free for almost fifteen years, but since then? Time to get out the dartboard, throw a dart and see which medication I start next!

Or some people have brain surgery. If you think open heart surgery or removing tumors is scary, imagine extracting the entire state of New Jersey from your head. How does that affect someone’s personality? Aside from the existential question of “Am I still me if I have part of my mental capacity removed?”, you just lost a big chunk of the eastern coastline. (For the record, I know several people who’ve had brain surgery and they’re doing just fine. No mental or emotional scars, just the physical ones on their head from the incision.)

So there are a lot of unknowns about epilepsy. Who, what, where, when, how and why? We know the who and the what: one in 26 have epilepsy. There’s usually no where or when until after a seizure happens; how they happen or why? Not many answers there, either. And without answers, people think it’s scarier than things that kill a lot more people. Things like cancer, heart disease and diabetes.

But it doesn’t have to be scary. More research is constantly being done for different kinds of treatment: different medications, different surgeries, different implants (you may be able to keep New Jersey on your neural map). They can limit or prevent seizures altogether. They can help people function on a daily basis. They can allow those of us with epilepsy to live relatively normal lives. That’s the hope, anyway.

And I think that’s the point of Epilepsy Awareness Month. Talking about it, learning about it, realizing that it’s not as scary as you might think. Sure, sometimes people with epilepsy break lamps, but I was in a play when it happened. I was supposed to bump it with my arm when I ran past, then grab it before it fell… oops. (Thankfully, we had a backup lamp for the remainder of the shows.) So there can be lamp casualties, but that doesn’t change the fact that we’re not that scary.

We’re one in 26. We have epilepsy. And we’re pretty awesome people, too.

First off, a confession: I started writing this post on the 13th. I’ve had plenty of time to think about what to write the last two days, but having all the time in the world doesn’t guarantee that my brain will cooperate when I’m trying to formulate a good idea. Sure, a little nugget of inspiration might pop into my head, but I may hit a proverbial brick wall or my line of thought might start heading in the wrong direction. Usually, I’ll grind it out, work with what I’ve got, but sometimes… sometimes that just won’t work. Suffice it to say that I’ve gone scorched-earth on this blog post three times so far and this is my fourth attempt. I know there’s something here worth saying, but getting from point A to point B can be a long and winding road and as a man, I think I’m morally obligated to not ask for directions.

The idea that I’ve been trying to build upon is forgiveness. But not just any forgiveness. Self-forgiveness.

That first nugget of inspiration came because at some point, I had thought about trying to write something for each day of NEAM. It seemed like a ridiculous idea initially, especially since I’d tried it several times before and might last for a few days before skipping one or two or just flaming out for the entire month. However, as I kept successfully writing blog posts days after day, it was become a realistic possibility. Maybe I can do this!

And then I reached November 13th. I had about an hour left in the day, didn’t have a really good idea to work with… then I thought that I could let it slide for a day. Intentionally. Because yes, I was starting to put a little bit of pressure on myself to get it done each day, so what happens if it doesn’t get done? Does that mean I failed, which makes me a failure?

I had started writing that the night of the 13th, then thought I could try to work on it on the morning of the 14th, but after about an hour and a half of trying to edit what I’d written, I deleted all of it. It just wasn’t working. And does that mean I failed, which makes me a failure? Then I was planning on trying to write something the night of the 14th and again the morning of the 15th, but I was never able to put together a solid narrative, something that I liked and something that made sense. Now we’re giving it another try.

So how does this relate to epilepsy? A lot of time, things are out of our hands. We might have the best of intentions, but whether it’s external circumstances or our own brains, those best of intentions don’t mean squat. Stuff happens and we have to figure out a way to work around it.

And then we get back to the failure part. During SEEG testing, I remember when the doctor was showing me pictures of objects on a screen and told me to say, “This is a [insert name of object here].” In retrospect… how stupid was it to not be able to say, “This is a clipboard”? Such a simple thing, so as we kept going and I kept being unable to identify simple things, I was getting angrier and angrier about it.

During the second round of testing when they were shooting little jolts of electricity into the electrodes in my brain, I wasn’t concerned because something was being done to me—I couldn’t say the word because of those jolts of electricity. But why was the first round of testing so much more upsetting? Does the fact that no one was zapping my brain make me a failure?

So it was a reminder to myself that could then be passed along to anyone reading this: give yourself some grace. Of course it’s simple and easy and not being able to do something simple and easy is just ridiculous. But when we have a condition like epilepsy (or any other mental or physical disability, for that matter), we don’t choose to have it. I never blew out the candles on my birthday cake one year and wished to have my brain start misfiring in ways that could make my life more difficult. It just happened that way. We accept things the way that they are, then we figure out a way to manage and keep moving forward.

I could sit down in the corner and pout. I could curl up in the fetal position with my thumb in my mouth. I could keep getting angrier and angrier until the only thing between me and a grand mal seizure is an injection of Valium into my IV. They’re all optional responses to our circumstances, though I don’t recommend any of them. Better to respond like I did after the first blackout-type seizure when I walked into the kitchen and then was walking out with a plate of eggs and toast, zero recollection of making them: “Oh, so this is a part of my life now.”

It’s hard to do. It’s extremely hard to do. But the most important thing to remember is that we very rarely decide to make our brains fire in a strange way. So whether you want to forgive yourself or forgive your brain, it amounts to the same thing. Self-forgiveness. Cut yourself some slack. Give yourself some grace. Skip writing for one day of NEAM so that the next day is even better. And if that doesn’t work… there’s always the final option of going scorched-earth and starting the blog post all over again. (I don’t recommend doing that, either.)