Me, Myself, My Brain & I

One of the fun things about cleaning the house and digging through boxes of papers that haven’t been opened up in decades is stumbling across stuff I wrote years ago. In this case, the title of the document (and this post) is referring to “The Story of My Life and Epilepsy”.

I don’t remember exactly when I wrote it, but it was shortly after my diagnosis. It’s eight pages long, so I won’t be posting the entirety of the text anywhere. Not just because it’s so long, but because I’ve learned a lot since then. If I could talk to my younger self, I’d have things I want to tell me.

First off, the title doesn’t quite work. Epilepsy wasn’t a thing back in ancient Greece, so if someone had a seizure—if they started having convulsions—the obvious cause was demonic possession. Demonic possession… the Devil… sorta kinda maybe, but not really.

Also, your writing needs work. Some of the jokes are funny, some things are extremely cringe-worthy, and some of it is as dry as the Sahara Desert and not nearly as interesting.

(Side note: if you work in admissions at a college and a visiting high school student is interested in your creative writing program, DO NOT send him to a remedial writing class. He will be severely underwhelmed and you’ll never get his tuition money. Yes, that actually happened; no, I didn’t attend that school.)

Don’t put a wallet in a person’s mouth if they’re having a grand mal/generalized tonic-clonic seizure. It won’t help their seizure and you could lose a few fingers if they get too close and the person’s jaw suddenly snaps shut.

The numbers are wrong. 1 in 26 people have epilepsy and there are over 40 types of epileptic seizures. As for how many I’ve personally had… definitely more than 1 and fewer than 40.

As for the blackouts I had for a few years (I think they fit in the complex partial seizure category), I had forgotten about the first one. I thought that it was when I was walking into the kitchen and then walking out with a plate of eggs and toast. That happened a number of times, but it wasn’t the first.

The first was a few weeks after graduating from college. Breakfast was still involved: my little brother and I were eating cereal at the table. I was wearing boxers, then my head felt a little fuzzy and I suddenly realized I was wearing a t-shirt, so I asked him what had happened over the last few minutes.

He told me that I stood up and said, “I’m cold.” I went to my bedroom, came back wearing the t-shirt, walked to the table, pointed at my bowl of cereal and asked, “Is this mine?” He said it was, so I sat down and started eating again. A few minutes later, I stopped and asked him what had happened.

I thought it was interesting that I initially referred to epilepsy as a disorder, but when discussing “The Solutions,” it was a condition. And that’s probably the term I’d use these days: a condition. My brain didn’t develop the same as most people’s, but that just means it’s different. Kinda like the difference between calling someone disabled versus differently-abled. The latter sounds more accurate.

The severity of someone’s seizures doesn’t determine the number of medications they might need to take. It’s all about what works with the person’s brain chemistry and what’s most effective. At different times, I’ve taken one, two, and three different medications at the same time; taking just dilantin and taking lamictal and depakote together have been the medications that have prevented my seizures for at least a few years each.

It’s better to call them “medications” rather than “antiepileptic pills.” One that I’ve taken is more commonly given to people who are bipolar. There’s another that I stopped because it didn’t prevent my seizures, but I now take it to treat my restless leg syndrome. (My wife doesn’t appreciate getting kicked under the covers all night… I sleep through it, but she sure doesn’t.)

At the time, I thought that surgery seemed like an extreme form of treatment for epilepsy. “Boy, you’re gonna laugh when I tell you this…” (In younger me’s defense, I didn’t do much research about it and thought that resection—removing brain tissue—was the only kind of brain surgery that existed. Obviously, I know better now.)

One thing I wrote back then that I still believe: be open about your condition. If you tell someone you have epilepsy and they scream and run away, do you really want or need them as friends? And if someone finds out they have epilepsy and writes an eight-page document about it, maybe try some constructive criticism rather than burning the pages and sending them down to the Devil where they belong!!! Um… yeah, that…

“Plus a lot on the sides and in the back, too.”

Connie works at a hair salon and she’s been cutting my hair for over 20 years. Well, had been cutting my hair for over 20 years. Prior to Tuesday (two days ago), the last time I saw her was in mid-May. Between then and my recent visit, I paid for ONE haircut. Because that’s what happens when the neurosurgeon buzzes everything on my head down to nearly stubble.

But it was time. No, it was past time. The sides of my head were getting poofy, I was tugging on my hair whenever I reached for the stems of my glasses, and the back of my neck was working on trying to grow its own tiny little ponytail.

The first thing I did was explain that I’d had brain surgery because she was going to be able to see the scars on my head as soon as she moved the hairs around to start cutting them. (As a side note, I was surprised that after she finished, even my wife couldn’t see any gaps to indicate where the scars were. It might also be in part because I have really thick hair… probably a combination of the two. Either way, I’m happy.)

Connie asked if the RNS device was preventing all of my seizures, so I explained that wasn’t the case, then told her about the magnet on the carabiner that’s clipped to my belt loop whenever I realize that I’m having one.

Well, we both realized that I was having one. I can feel when my head starts jerking around a little bit—it would have continued getting progressively worse if I was still relying on medications to prevent seizures—and she could feel it jerking around because she was holding onto my hair while cutting it.

I’d told her about the magnet, but now she got to see me take it off my belt loop, then slowly slide it over my head where the RNS device was. (I told her that I was thinking about attaching the magnet to a comb instead so that I could look cool while doing it…) And that was it. I clipped the carabiner back onto my belt loop and she went back to cutting my hair.

But as I thought about it afterward, I don’t think this seizure affected my ability to process language. She told me the head jerking wasn’t bad, I told her when I was reaching for the magnet and explained my willingness to go to desperate measures to look cool… it seemed like the only obvious indicator that was I was having a seizure was the physical effect it had.

Does that mean the RNS device is becoming more effective? Probably not. I think it’s a sign that it’s continuing to be effective. My seizures were pretty consistent before: 30 seconds of words not making sense plus the head jerking that was slowly getting worse. I think it’s also a sign that I can’t rely on the neurosurgeon cutting my hair anymore, so I’ll need to start visiting Connie at the salon every six weeks again.

Sparky was switched to active mode on December 5th and my appointment to make the first round of adjustments is on March 12th, so I’m slightly past the midway point. As expected, I’m still having seizures. Not as expected, my seizures have been changing.

The first thing I should mention is that I’m still using the monitor I described back at the end of October. I should have known that would be the case—how are they going to know what kind of adjustments to make if there’s no data showing how effective the RNS has been? So scanning my head on a consistent basis is going to keep happening as long as said RNS device is operational.

And I apologize for not writing a blog entry each time I had a new type of seizure, but life happens and the blog isn’t always my highest priority. As a result, I don’t remember when these seizures happened and this could be a significantly longer entry.

The first one probably concerned me the most. I could tell I was having a seizure—as I was reaching for the magnet (yes, I’m still using that, too), I thought about something really important that I needed to tell people as soon as I was done swiping it over my head.

When I was done with the magnet, I tried to remember what that really important thing was, but it was gone.

“Oh no… I remember something like this happening before. This was like those ‘Eureka!’ moments during SEEG testing.”

I sent a message to Dr. White to ask if the electrodes that were now actively sending little zaps into my brain were in the same area as the electrodes causing that same effect during SEEG testing. The response?

“It is likely a part of that seizure network- so at least very close to the location of the strip and the depth electrode.”

Mind you, this was just a day or two after my appointment to switch the RNS device to active mode, so now I was wondering if I was going to having “Eureka!” moments every day or two until my next appointment.

Thankfully, that was the only time it happened. The effect of the other seizures have been more of the “What are words?” variety.

Except the time when I was at a family brunch and I could feel the seizure starting. Instead of being unable to understand words for 30 seconds, I spent the next few minutes describing my seizures to my niece and nephew. When I was done talking, my head jerked suddenly—that’s how I knew the seizure lasted so long.

At that point, I was wondering if my seizures were changing so that instead of 30 seconds at level 4, they’d last for 2 minutes at level 1. And no, of course not. That would be way too predictable.

I’ve had a few that were pretty similar to those 30 second level 4 seizures. Same old, same old… but then there were two that hit hard and fast.

That’s not to say that they were painful. The first happened when I was walking the dog. Everything was normal, then BOOM. My head jerked and… it was like if someone suddenly threw a bucket of cold water in my face. Shocking and slightly disorienting, but then it was done.

I knew I was supposed to do something at that point, but it took a moment to remember the thing was swiping the magnet over my head. (Like I said, it was disorienting.) Thankfully, I was able to reach my right belt loop with my left hand to grab the carabiner with the magnet—I was holding the dog’s leash with my right hand and he was too busy pulling on the leash for me to use that hand.

Then just a few days ago, I had one of those extended on-off seizures (thankfully, it didn’t last as long as the others like it). I wasn’t having a conversation or trying to read or write, so it wasn’t as obvious that I was having a seizure.

However, my wife Teresa was in a nearby room… I think she was scrolling through Instagram on her phone. I could tell something was happening because I would have a thought, then a second later, it sounded like the audio on her phone was repeating the same words I just thought. And then the thought was gone and I had no idea what the words had been.

So to quote Teresa’s favorite word, I’ve had a plethora of different kinds of seizures since the RNS device became active. It seems like the frequency and intensity of my seizures have decreased, so I’m pretty sure that it’s working. As for the different kinds, well, let’s hope that stops when we increase the power coming up in March. If it doesn’t and my brain starts misfiring in new and unusual ways, I’ll try to do a better job of writing new blog entries as they happen.

According to Ohm’s Law, I feel like I should have smoke coming out of my ears now that the RNS device has been switched into active mode.

The equation above signifies Volts = Amps x Ohms. And no, I don’t know why amps = current = I. (Physics and I didn’t have a great relationship back in school.)

In this case, the equation uses milliamps and ohms. They’re starting out with a very low amperage: the strip of electrodes on the surface is set to 0.5 milliamps and the lead that goes deeper into the brain is 1.0 milliamps. The resistance (ohms) in the strip varies from 1126-1557; the lead is 640-855.

So assuming I’m doing all of the math correctly (using the lowest resistance), the strip is 0.0005 x 1126 = 0.563 volts. The lead is 0.001 x 640 = 0.640 volts. Those don’t seem like large numbers, right?

Flash back to SEEG testing and they were measuring the testing in microvolts. Thus, the highest level they reached was 0.000008 volts. So again, assuming I’m doing all of the math correctly, the lowest voltage of the strip is currently 70,375 times stronger than what I experienced in the hospital.

That said, when we switched the RNS device to active mode this morning, we sent some test jolts to the strip and the lead to make sure my eyes wouldn’t roll into the back of my head or my hair lit on fire. The result: I didn’t notice anything happening. Dr. White gave me a medical information sheet to read and I had no problems as we were doing the tests. (I even noticed that one of the sentences was missing an “as”.)

So everything seems to be working so far and no problems with language comprehension. I’ll be going back again in three months so we can recheck the data—we’re starting at a really low amperage, so the RNS device may not be doing a very good job of preventing seizures at this point and we’ll need to turn it up. At that point, I don’t think I’ll try to figure out the math anymore. It seems easier (and less scary) to measure things by doing the burning hair test instead.

Four weeks ago, I had 51 staples removed from my scalp at the neurosurgeon’s office. I came back today for a follow-up appointment so they could see how I’ve been doing. Plus one other little thing.

Recently, I’d been feeling something weird on the scar on the side of my head. Ever since I was a kid, I’ve had the nasty habit of picking at scabs before they’re fully healed. Well, I started picking at this thing until I eventually pulled it off. “That’s the weirdest scab I’ve ever seen in my life…”

It turned out that underneath the staples, there were four sutures, so this time, someone removed the remaining three sutures. He pulled out two that had mostly worked themselves out of the skin and cut one—it turned red when he removed it, so I was technically bleeding afterward.

And because he cut one suture, he said I’d need to come back in a few weeks for another follow-up appointment.

That wouldn’t be such a big deal if it weren’t for the fact that getting to their office takes at least 30 minutes, so I’d be driving for over an hour to talk to someone for maybe five minutes.

He then said that given the distance, as long as I’m not having any issues, they might be able to let me take a few pictures of my head and send those instead. (I’m hoping that’s the case… I also hope they’ll be able to see the scars in those pictures, given that my hair has been growing back pretty quickly.)

The good news is that I’m now officially allowed to resume all regular physical activity, so I won’t be bending doctor’s orders when carrying a 50-pound Amazon delivery from the front door up a flight of stairs to the kitchen, which I may or may not have done about two weeks ago.

He had also asked how the RNS device was working now that it was switched to active mode. Well, that was supposed to happen yesterday, but I got a call the day before from Dr. White, who apologized because he was too sick to come to the office. The nerve of that guy, letting himself get sick like a normal human being…

So we rescheduled and that’s supposed to happen two days from now. At that point, I shouldn’t need to keep using the tablet and wand to scan my head every night. Dr. White said I won’t need to give it back, but given that it has one very specific purpose, maybe it’ll make a good paperweight? Or a doorstop? Hopefully, I can use it for something other than taking up space in the closet.

If you’re reading this blog, you’ve been getting wave after wave of ideas and opinions from yours truly and that’s about it. Given that I have a limited viewpoint, I wanted to get a few more voices in here to provide additional perspectives, give you some additional awareness from other people who have epilepsy. And just remember that while today may be the final day of NEAM, don’t decide that you don’t need to be aware anymore because we’ve reached the end of November. Everyone who has had epilepsy over the last 30 days will likely have epilepsy during the other 11 months of the year as well. We don’t want your pity, just your understanding and acceptance.

It’s not a disability, it’s a challenge.

Knowing you’re not alone in this journey is important.

Since 1990, I have been approaching my seizures from a variety of ways: physical, emotional, mental and spiritual. I trust and have faith this is all part of my classroom.

This is another post that I wrote back in 2018. Man, I was insightful back then…

This is something that occurred to me earlier today at the doctor’s office. (It had been over a year since my last appointment at Minnesota Epilepsy Group, so it was time to see Dr. White to talk about medications and what might work better than what I’m taking now.) I don’t remember if anything triggered this particular thought process, but I know I thought about some friends of mine, Marie and Porter.

I like them, they’re a nice couple and they’re both on the autism spectrum. They have to deal with a constant barrage of people who think they’re broken or damaged, who want to find a cure to fix them and make them “whole” and they think it sucks. As it turns out, they don’t feel broken or damaged. They feel like themselves. They embrace their own existence and they’re happy.

I know of people who pray for me to be fixed, too. I have seizures, so they hope I get cured! And that’s not how it works. I understand that now.

I can’t be cured because there’s nothing wrong with me. Yeah, I have epilepsy, so what? Just because I don’t match someone else’s expectations of what “healthy” or “complete” or “whole” should be doesn’t mean I’m in need of repair. I just am. This is me, plain and simple. This is what you get. I’m Shawn, I have epilepsy, pleased to meet you.

I absolutely wish that I can find something to prevent me from having seizures, but that doesn’t mean I need to be “fixed”. I’m not in a state of broken-ness. You look at Shawn and you see someone with epilepsy. It’s part of who I am and that part of me ain’t goin’ away.

I accept that. I’m not searching for a cure. I don’t want one. I don’t *need* one. There’s no part of me that needs a cure. Something is causing abnormal activity in my brain just like it’s supposed to. You can look at it from a religious perspective if you’d like: God made me just the way I’m supposed to be. I’m perfectly imperfect. I’m Shawn, hear me roar!

… meow?

I feel like I should try to make this clearer, but I don’t think I can. I don’t fit the norm. I’m not like you or him or her or anyone else. I’m 6’3″. I have a cowlick on my chest. I have black hairs that grow on the fronts of my ears. They’re very strange, but will you ever hear anyone calling for a cure for cowlicks? No. Because it’s close enough to generic personhood that they don’t worry about it.

Even though epilepsy might not fit within that mold of generic personhood, it doesn’t mean there’s something wrong or broken about me. I’m just different. And that’s okay. I’m okay. I want to find a way to prevent my seizures, but ultimately, I ain’t broke, so don’t try to fix me.

National Epilepsy Awareness Month is almost over and I have yet to post anything about what to do if you see someone having a seizure. I wanted to find a video that fit two guidelines: it offered visual examples (not just spoken or written instructions) and was made within the last 10 years or so. It was surprisingly hard to do, but consider this your guide for seizure first aid:

Here’s another post that I found from Thanksgiving 2017. Along with the general “giving thanks” on that particular day, I referred to gratitudes.

The idea of gratitudes is fairly simple: each day, write down three things that you’re grateful for. They don’t need to be the things you’re most grateful for. They can be as simple as “sunshine” or “big hugs” or “pizza.” But if the thing you’re most grateful for is pizza, I understand.

Doing that—writing down three gratitudes each day—will help remind you of all the amazing things around you, all the things worth appreciating, and that can improve your general outlook on life. I know it’s worked for me: I eventually started writing five (or more) things and described why I was grateful for them. Hopefully, it can work for you, too.

So I hope you all have a happy Thanksgiving and I hope you consider starting the practice of gratitudes. Much like having epilepsy isn’t restricted to November, you should be thankful tomorrow and the day after that and the day after that…

_______________

I’ve managed to write a lot of gratitudes this year and acknowledge a lot of blessings in my life. Given that today is Thanksgiving, which is in the middle of Epilepsy Awareness Month, why not put together a batch of epilepsy gratitudes? A lot of people might see “epilepsy” and think, “How could there possibly be anything related to epilepsy that’s worthy of gratitude?” Well, we’re about to find out!

1. My support network (aka, my family and friends). I don’t talk about having epilepsy much—it’s not something that comes up in conversation over Thanksgiving dinner—but when people I care about find out, they’ve always been extremely supportive. No one’s been scared off, no one’s tried to chase me away… it hasn’t cost me any relationships and not everyone with epilepsy has had that luxury.

2. Medications. Even when they haven’t prevented my seizures altogether (that was a good 15-year stretch…), they’ve limited their frequency and severity. I stopped taking my medication once. I was in the epilepsy ward at United Hospital and they were trying to induce seizures. It worked. I had seizures. And I have no plans to let that happen again, so I’m grateful for my meds.

3. United Hospital’s epilepsy ward. I spent about a week and a half there back in 2001-02 (yes, I spent that New Years Eve with a bunch of wires glued to my head and a not-very-festive-looking football helmet on top of that). I don’t know how many seizures I had or how many different types, but those wires helped us find the problem area in my brain: the left temporal lobe. That in turn helped us find the medications that prevented my seizures for 15 years.

4. Minnesota Epilepsy Group. I’ve worked with a lot of smart doctors there and they’ve been really helpful trying to keep my epilepsy under control.

5. Epilepsy Foundation of Minnesota. I’ve done volunteer work with them for about a year and a half: reading at an arts showcase, working at their State Fair booth, volunteering at Camp Oz (a summer camp for kids), attending their monthly support group… being able to help others with epilepsy has been good for my heart and soul.

6. Having epilepsy. Yes, that’s right, having epilepsy. It’s absolutely a frustrating condition at times, but it’s also given me the opportunity to do a lot of things and meet a lot of people I never would have otherwise. It’s a big part of who I am today and I’m very grateful for that.

It was raining when I went to bed last night and I woke up to snow on the ground. That meant the temperature dropped below freezing overnight, which meant that my car (which was parked in the driveway) had a thin layer of ice on it when I needed to drive somewhere this afternoon.

I needed to get the ice scraper out of the garage, then clear the ice off the windshield and windows so I could see, all the while thinking that I was probably going to be late for my appointment. I really would have appreciated not having to deal with that kind of inconvenience.

But go back about 25 years and I would have been thrilled for that kind of inconvenience. The epileptic seizures I was having at the time involved an involuntary loss of consciousness, so my driver’s license was suspended indefinitely. If I needed to run an errand, I had to ask for a ride. If I wanted to travel somewhere, same deal. And that says nothing about the 20-mile drive to and from law school most weekdays.

That created some serious problems. I sat in the passenger seat with my parents, my brothers, some of my classmates… it was both frustrating and embarrassing. I was in my mid 20s and basically stuck at home unless someone else went out of their way to do me a favor. Today, I was scraping ice off a car that I could drive on my own. Compared to back then, I truly felt blessed to be dealing with such a minor inconvenience.