Me, Myself, My Brain & I

When I was being released from the hospital back on June 18th (less than two weeks ago), Teresa and I sat down with a nurse so she could read through my discharge instructions. Given the confused look on her face, I get the feeling she had never been told “We can skip past that one” before.

It was certainly a valid statement on my part. In the additional hospital orders section, the first thing it mentions is “No driving per Minnesota State Law for 3 months following an event with loss of awareness or inability to maintain voluntary control.” There’s more, but in my case, it didn’t apply—the doctors started weaning me off of my medications almost immediately on Tuesday, my first seizure (a relatively minor one) was on Thursday night, then I had a bunch on Friday. Enough that they decided they had all the data they needed and they started putting me back on my seizures meds again. During that time, I never had a grand mal seizure or any other kind of seizure that involved a loss of consciousness. Thus, that state law didn’t apply. No discussion necessary.

There were activity restrictions that the nurse read to me (for example, no lifting more than 5-10 pounds, walk throughout the day and slowly increase the amount that you are walking, it is normal to have some pain or headaches after surgery and I may experience an increase in these symptoms 2-5 days after surgery due to inflammation and nerve sensitivity), all of which I listened to carefully and the examples listed above… they were disregarded pretty quickly.

I was good about waiting for a few days before lifting much weight, but when you’re home alone, you have a older dog who can’t see well and thus can’t use the stairs on his own, and he’s 16 pounds, you basically have two options. Letting him pee on the carpet seemed like the worse option, so I lifted him up under my arm and broke the rule. Twice because I also needed to get him back up the stairs.

And then there were the pain meds. They gave me a prescription for Tylenol and oxycodone, neither of which I opened. Admittedly, I took one extra-strength Tylenol the first night I was home, but it had nothing to do with surgery—it was because my right knee was sore.

I had wondered just how far I walked on the day I was released from the hospital, then I remembered last night that I had been wearing my Apple Watch with an activity tracker on it. I scrolled back to the 18th: the day I walked out of my hospital room, through the hospital, out to the parking ramp, helped walk the dogs a few times, then took that Tylenol before bed. According to my watch, I walked just under two miles. So yeah, the stuff about pain medication and “slowly increase the amount you are walking” didn’t really apply, either.

I’m not suggesting that anyone ignore their doctors’ orders, but I’m sure I’m not the only patient who’s ever left their hospital room and thought, “I’m fine!” (Thankfully, my body agreed with that assessment.) I got a call last week from a nurse who was checking in to see how I was doing a week after being released, so I told her that I felt fine. The first nurse was puzzled about me telling her to skip instructions; the second nurse got to hear the good news about why some of the instructions… well, I didn’t tell her that I openly ignored the instructions, just that I was feeling fine.

That’s not to say that everything is perfect. My head itches. It started itching pretty quickly, which is a sign that the incisions made to remove the electrodes are healing, but each incision was patched up with a single suture and it felt like some of them were basically being pushed out of my scalp after just a few days. Some people might be fine with that, but me? Even as a kid, I had the bad habit of picking at my scabs. Now I have sutures that are supposed to dissolve or reabsorb within a few weeks and there are a few that already feel like I could pluck them out with just a tiny tug.

When I first got out of the hospital, I was wearing a hat to limit the amount of staring people might do out in public. (My hair was buzzed short and I had 15 small scabs around the sides of my head, which no one would ever notice or stare at.) Now I’m wearing a hat to make sure the sutures stay in long enough for my head to heal and I think that would have been something useful to include in my discharge instructions.

I was writing a letter to a friend earlier this week (yes, sometimes I contact people in other ways than phone calls, texts, emails, or throwing rocks through windows with notes tied around them) and came to kind of a strange realization.

In the letter, I had initially written about how I just got out of the hospital, had a bunch of electrodes inside my head, went through a variety of different tests… and then I realized that all of this might be completely new information. Maybe not to him, given that he knew I took medication for seizures, but definitely for most of the people I knew within a certain (long) period of time.

I don’t always remember what I’ve written here for public consumption, especially given how much I’ve been writing over the last few weeks, but the short version is that I was having uncontrolled seizures for a few years and ended up going through EEG monitoring for the first time in 2001-02. With the data my doctor gathered, he suggested we try two new medications: lamictal and depakote. It was a good combination—my last big seizure after starting the new meds was in April 2002 and I didn’t start having seizures again until 2017.

A lot happened within those 15 years. I met a lot of people. I went to some different schools and earned some degrees. I was an extra in a handful of movies and TV commercials. I played intermural soccer for a lot of years. I acted in a handful of plays through a local community theater. I was on a reality show in 2005 called Beauty and the Geek. (I may have mentioned earlier that I have a lot of stories that I could share…)

So like I said, I met a lot of people during that time. Among those people, if they never saw me take any seizure medications or never saw me volunteering with the Epilepsy Foundation of Minnesota—that may have led to some questions—then they wouldn’t have had any reason to know that I had epilepsy. Why bring it up as a topic of conversation if it’s a non-issue at the time? Why talk to people about seizures when I’m not having them?

Those questions make complete sense. Of course I’d have no reason to say anything, but given how having epilepsy has become such a huge part of my life recently… and this thought process started before writing the letter to my friend, too. I’ve been posting links to these blog entries on my Facebook page and someone from Beauty and the Geek gave a heart response to the message I wrote to my care staff. She was my partner on the show and we shared a bedroom for about two weeks, so she may have seen me taking meds, but what about everyone else on the show? Or my school classmates or my soccer teammates or…

While it may not be the best mental process to engage in, there have been a number of times where I completed something (school, theater, etc.) and then felt like I was cutting ties and turning the page to a new chapter. There are dozens of people who played a significant part in my life story earlier, but I moved to the next chapter and I’ve never heard from them again. It’s not a great way to develop lasting friendships, which… well, friendships are good and I recommend that you try to maintain at least a few if possible. Trying to get through life on your own can be extremely difficult and generally isn’t good for your mental and emotional wellbeing.

And that’s my TED talk about the benefits of therapy!

I’m only sort of joking when I write that, but the fact remains that if I accidentally bump into someone from my past or if I attend a college reunion at some point, something along those lines… people would be shocked when they heard about what’s happened over the last few weeks. It’d be like an old acquaintance walking up and asking if you’d like to attend a gender reveal party and you’re thinking, “Back up… the last time I saw you, you were 12. Maybe you should fill me in on a few details before I agree to join the celebration.”

But I also want to add that no one has done anything wrong. I’m not upset nor do I feel guilty about losing touch. Some people are friends for a chapter; some are there for the entire story. It just felt a little strange to write a letter to someone who was part of a previous chapter and now he may need to do some homework to understand what’s happening right now. Maybe he can find some Cliff Notes to get a general outline. Or maybe I’ll have to wait until I see him again and then he’ll have to sit through an extended session of Story Time to find out what the heck has been going on recently. If it’s the last one, well, I’m sure that I could share a multitude of stories, but I’ll need to remember that he’s listening to me as a friend, not a therapist.

The neuropsychologist and his assistant had finished their part of the testing, now it was just the person watching the screen that monitored my brain waves and Dr. White, the man with the button. Thankfully, I’ve been working with Dr. White for many years and we’re on very good terms, so there were no concerns about him randomly deciding, “Hey, let’s crank it up to 20 and see how he reacts…”

No, the rules were still the same: there were maybe seven places per electrode where they could apply a small charge that ranged from 2-8 microvolts and each charge would be applied for five seconds. (For the sake of simplicity, I’m going to refer to each location on an electrode as “the next place.” Because I’m a fan of simplicity when I write. Or I’m lazy, take your pick.) But while the neuropsychologist was doing tests similar to Friday, telling me to identify images and what not, this was more of a “Tell us if something feels unusual.”

I know, that’s extremely open-ended and there were a number of places where the charge didn’t cause any reaction at all. Moreover, there were no sham trials. Regardless of whether I felt anything or not, we went through all four stages—2, 4, 6, and 8—and then moved to the next place on that electrode or on to the next electrode.

Actually, there was one exception to that process. We did the test at 2 and I wasn’t sure if I felt anything (that happened a lot), but when we did the test at 4, the feeling in my head was really similar to when I start having one of those seizures where I can’t process language for about 30 seconds. It wasn’t actually one of those seizures, given that I was able to say, “The feeling in my head is like when I’m starting to have a seizure.” Given that the purpose of this testing wasn’t to induce seizures, we just stopped at 4 and moved to the next place.

Actually, it’s been a week, so I don’t remember if Dr. White actually said “feels unusual,” but he said that I might noticed tingling sensations, things like that. In some places, that was most definitely the case. I might not notice anything at 2, but at 4, I could feel a tingling sensation on the outside of my left cheek and the back of my left shoulder blade. At 6 and 8, the tingling felt stronger, but still in the same places on my body. We moved to the next place on the electrode and the charges caused tingling sensations on the outside of my left cheek and the outside of my left shoulder down to the elbow. Sometimes I wondered if maybe Dr. White said he was applying the charge and I was unconsciously making myself feel a reaction that wasn’t really happening. (He limited that possibility as much as possible by not pressing the button immediately after saying he was applying the charge.) In cases like feeling tingling in my cheek and shoulder, that was most definitely not me unconscious causing a sensation of my own—those tingles could start to sting when the charge got stronger.

But they weren’t all physical reactions. In a few places, he’d say he was applying the charge and then it was like I was having a “Eureka!” moment. Like my brain was putting two ideas together in a way that I’d never understood before, I couldn’t quite say what it was, and then it was gone at the end of the five second charge. No idea what the idea was. At each level, the same idea came into my head and I could never explain it before the five seconds ended and it was gone again. In one instance, I really wanted to be able to say what the idea was and had him apply the level 8 charge three more times, but I was never able to say anything and the idea was always gone when the five seconds was up. I eventually gave up and we moved on, but I still sometimes wonder if it was a brilliant idea that I might have been able to explain if I’d had more than five seconds to process it.

During this part of the testing, the person monitoring my brain waves asked the nurse if she’d like to come over and look at the computer screen. When Dr. White pushed the button, he pointed out how it was affecting the brain waves shown there. I looked at where the nurse had been sitting and a nursing student was still sitting there. I thought it was kind of impolite to not invite her over as well, so I asked her if she wanted to take a look as well. Of course she did! She quickly walked over and started observing the monitor as well for a while.

“For science!” That phrase came out of my mouth a few times toward the end of stimulation testing. Dr. White said that we could stop and finish on Tuesday, but why? Let’s keep going! For science! But it was the second-to-last place on the second-to-last electrode that I regretted my decision to some degree. Probably multiple degrees. And I wish that I’d had some kind of experience or sensation in the past that I could use as a source of comparison: “It felt like…” But I didn’t have that. I just knew it felt awful.

Dr. White hit the button at level 4 and there was no mistake about when the charge actually started. I may have let an “Uuugh” escape my lips when it started. I just felt physically uncomfortable and unpleasant for the full five seconds. Unfortunately, that sensation became less powerful, but didn’t go away at the end. I think Dr. White would have understood if I’d asked him to stop at that point, but I held up my finger and said, “Let’s do it! For science!” And he pushed the button and I felt worse for another five seconds. “For science!” Man, I must love science more than I realized to go all the way up to 8 in that particular instance because it just felt wretched. Thankfully, the last place on that electrode wasn’t nearly as unpleasant when Dr. White pushed the button, but I absolutely needed to take a break when that electrode was finished, try to regain my composure a little bit.

And since there was just one electrode left, we went through it. I don’t think I felt much of anything for most (or all) of all of those places on the electrode because I think he jumped from 2 to 5 to 8 a few times. If I’m not feeling any reaction and the person monitoring my brain waves isn’t seeing any reaction, there’s not much point in checking all four levels like usual. If the lowest and the highest don’t cause a reaction, odds are pretty good that any middle level won’t cause something different. So I was extremely grateful that it was the last electrode and the final experience from the testing wasn’t just an awful physical reaction like the previous electrode. I was also grateful that we finished all of the stimulation testing that evening (I think all of the testing lasted somewhere in the 4-5 hour range) because it meant that I was essentially done. They were able to remove all of the electrodes from my head on Tuesday and I was able to leave the hospital on Wednesday.

But when the testing was over, Dr. White seemed almost giddy because of all of the data we gathered over the course of testing, which makes sense. Aside from the fact that he really loves his work and he’s fascinated by how the brain functions in general, he probably doesn’t have many patients who can explain in pretty descriptive terms what the heck he/she is feeling after that button gets pushed. Moreover, no two patients are going to have exactly the same brain functions with seizures that start in the same location of the brain, etc. Which means that odds are good that any data he gets from these tests is fresh data that he wouldn’t be able to gather from anyone else. He was describing some of the results to Teresa and me, but it was starting to get late, so he just ended the evening by saying that he’d present a lot of that data to the surgical conference at Minnesota Epilepsy Group, they’d discuss the results, and I’ll eventually hear from him and the neurosurgeon what kind of surgery they’ll recommend a few months from now. While I may not have felt the same level of giddiness as Dr. White, I was glad that I made it through all of the testing and provided him with as much good data as possible. For science!

I know, anyone who’s read the most recent thing I wrote is waiting for Part 2 of stimulation testing. I’m kinda waiting for it myself—I know that I was there, but as for what ends up in the blog post… that’s an excellent question. I’m trying to be as honest and thorough as possible, which is why it takes hours upon hours to write something that for me seems relatively short. It’s not a term paper and I’m not being graded (judged, perhaps, but not graded), but I’m still trying to hold myself and my writing to a very high standard under the circumstances.

However, things have been a bit… unusual since I left the hospital. It’s only been a few days, less than a week since I had the electrodes removed from my head. I noticed a little something different not long after getting in the car and leaving the hospital’s parking ramp. (And I don’t think it’s just because Teresa was driving when I’m normally the one behind the wheel—I don’t think being required to ride shotgun requires much of a mental or emotional adjustment.)

There’s one side-effect to electrocution that I’m aware of due to an incident as a child. I was standing in front of a wire fence with my older brother and looking at some cows on the other side. I reached out and grabbed one of the wires, felt some odd tingling sensation, then pulled my hand away and saw a stripe of green across my palm. My immediate thought: “I think I’m turning into the Incredible Hulk…”

No, I didn’t think earlier in 2025 that grabbing an electric fence could turn me into a giant gamma-powered rage monster. I’m guessing I was closer to age 6 and wouldn’t know anything about the reaction that copper (sometimes used in electric fences) can have when making contact with a young child’s skin. I’m just guessing about the copper causing the green discoloration, but it seems more likely than the result of hulking out, but just in the palm of one hand.

Anyway! The reason that I’ve been wondering about this is because I’ve been through seizure testing three times previously and none of them seemed to cause any sort of change in perspective or affecting my mental state in any significant way. I mean, they took me off all of my medications too quickly the second time and I ended up having withdrawal symptoms—rocking in a chair because I couldn’t stop my muscles from twitching and hyperventilating for an hour straight can make a person really reconsider developing an illegal drug addiction.

But in this case, I’ve spent more time enjoying spending time with my dogs. Looking up at the sky while riding in the car. Continually reminding my wife that I love her. Appreciating my life more instead of just idly watching the days go by. That would make sense after a near-death experience, but I never felt like that during SEEG testing. My head hurt because I had very tiny holes in my head and then little things screwed into those holes to keep the electrodes in place, but it’s not the same thing.

Then earlier today, Teresa and I stopped at a restaurant where she got a quick snack after we saw How to Train Your Dragon in the theater (FYI, you probably shouldn’t consider getting a dragon if you have small pets in the house that could either be brothers and sisters to the dragon or delicious treats…). The restaurant had little jars with slips of paper inside that could be used as conversation starters, so I pulled one out that asked about something I might like to do if I could be good at it (a certain sport, music, crafty stuff, etc.)

I thought for a moment, then thought that I might like to be good at drawing. I thought back to a time when I drew the head of a skunk Beanie Baby (including how the ceiling light glinted in its glassy eyes), then when I tried drawing a picture of my dad from a picture I took of him and Mom over 10 years ago… and then I remembered an art class from back in middle school.

We were partnered up with a classmate, sat down at a table face to face, then we were supposed to draw each other. I can’t remember how God awful my drawing looked (I remember it was God awful, but I may have blanked out what the drawing actually looked like), but I remembered seeing my partner’s drawing: my left arm bent and slightly to the side, my right hand holding a pencil against a sheet of paper and the hair on the top of my head because I was looking down as I was drawing my partner (hats off to Tim Bretl, it definitely looked like my hair and probably the rest of me, too). As I kept thinking about the drawing, I suddenly remembered that the art teacher’s name was Pat. She didn’t go by “Mrs. Johnson” or something formal, just “Pat.”

How long ago did I last think of any of that? I’ll be turning 49 later this year, so I’d guess it’s been over 35 years.

And it occurred to me that I’ve been thinking what it might be like to attend a school reunion of some kind. The most recent that I attended? Kenyon College, 10 years, summer of 2009. Why? Because my long-term memory is spotty at best. I’ve assumed that it was because of seizure medication, but whatever the reason, I didn’t want to put myself in a position of having this conversation:

“Hey, remember when we—”

“No. No, I don’t.”

And so to start thinking about what it might be like to potentially engage with people who remember me and I have zero recollection of them… part of my stomach starts churning a little bit at how awkward it could be, but part of me is also intrigued. Because what if I actually remember something?

Well, if I wanted to take the plunge, it might not be too late, given that this year is my high school class’s 30th reunion. There may be some local events planned later in the summer or fall, I might attend and maybe I wouldn’t feel ridiculous while I was there. But if I go and Tim Bretl is there, I am definitely not asking him how bad my drawing of him was.

I will grant you that this may be the most ridiculous blog entry title I’ve ever written, but it’s not without logic.

After gathering plenty of data from having seizures last week, Monday was all about stimulation testing: sending small electric charges into my brain through the electrodes that had been implanted when I first arrived at the hospital. Each electrode had maybe seven different places that could produce a charge; since each place in the electrode was next to a slightly different place in the brain, each could have a different effect. For each test, they’d indicate the location on an electrode, then 2, 4, 6, or 8 (I think that referred to the number of microvolts being applied). Each small charge would last for five seconds and then I’d do my best to explain what the heck just happened.

The first half of testing was a flashback to neuropsychology testing, but I felt quite a bit different this time around. On Friday, I knew everything was simple and I should have been able to identify whatever showed up on the iPad, so not being able to say “funnel” or “clipboard” would make me upset, resulting in a number of seizures in a short period of time. I knew there might be similar issues this time around, but if it happened, it was extremely unlikely that I was the reason why. It would be because of something done to me. The brain has its own electrical signals that are constantly firing—if adding an extra little zap causes things to misfire, there’s absolutely nothing I can do but sit back and marvel at the intricate workings of the human brain.

And that’s essentially what happened. We started with essays that might have been used for children’s standardized testing. They’d indicate the electrode and level 2, I’d start to read about how wool is used to make sweaters and they might stop me after a few sentences. (Not everything we tested affected my language abilities…) They’d go to levels 4, 6, and 8, record the results, then move to the next location on the electrode. They’d indicate level 2, I’d start reading… this time, I might stumble over my words a little bit. Move to level 4, start reading… then I had to stop because the words on the page weren’t making sense. For five seconds. Levels 6 and 8, same result, then move to the next test.

The worst part about that portion of the testing? We moved from wool sweaters to an essay about the moon landing, but I only finished reading about half of it before we moved on to some different testing, so I may never know if the astronauts made it from the moon back to Earth.

I had to identify more images (say “This is a” and what the image was) and I had a few failures, but again, I never got upset. Why? Because if we reached a point when I struggled and the doctors were satisfied with that electrode location and the level of charge applied, they’d do an “s-trial.” The next image: “This is a hammer.” No hesitation. It wasn’t until later that I asked what “s-trial” meant. They said it was a sham trial. When a charge was applied, I couldn’t identify a simple image; when they ran a sham trial and didn’t apply a charge, zero issues. Like I said, there was absolutely nothing I could have done to change the results—something being done to me was causing the failures—so there was no reason to be angry about the test.

There were also some sections of nonsense words, but it wasn’t as smooth as the last time around. On Friday, they weren’t words that I might be unable to recognize at any given moment, so I just had to mimic the sounds. Piece of cake. This time around, applying a charge meant I couldn’t always hear noises as clearly as I’d expected. Sometimes I could repeat the nonsense word with no problem. Sometimes… it was like the sound was muffled. I might be able to repeat the word, but I might pause for just an instant (almost as if deciding whether I heard it accurately or not) or finish the word and end with “… at least I think that’s what it was.” And there was times when I was wrong. I listened, repeated it as closely as I could, but it wasn’t identical. They’d tell me and we’d move to the next step, whether that be an increased charge, a different section of an electrode or an s-trial.

I hadn’t planned on making this a two-part blog post, but what I’ve written so far was just the first part of testing. The neuropsychologist said that he was satisfied, he and his assistant packed up, said goodbye, then all of the doctors left the room to talk in the hallway for a while as I took a break, a nurse sitting near the door came over and handed me some water to drink, then it was just a matter of time before the remaining testers came back into the room and it was time to get back to work.

For people undergoing SEEG testing at Abbott Northwestern, they have a 24-hour monitoring policy. I always needed to have at least one staff member in the room with me at all times. Sometimes it was a nurse, sometimes it was a nursing assistant, sometimes it was a handful of people (especially if it involved me needing to use the bathroom). I could have buried my face in a book, spent my time staring at my phone or laptop, or chosen a number of other ways to distract myself until eventually being allowed to leave the hospital. So what did I do?

I talked to people. I told stories. I listened to stories. I used what was in some sense a captive audience to help pass the time. (Thankfully, no one covered their ears and yelled “LA LA LA LA LA!” to try to get me to stop talking, which I appreciated.) I plan to write more about events that occurred during SEEG testing, but I wanted to take some time to write directly to them.

To my care staff:

The English language includes a large number of very important sentences. Sentences like “You’re really funny” and “This picture of your dog is so cute” and “You bumped my toe and now I can’t feel my right arm!” But perhaps the most important is “Thank you.”

Thank you for keeping me healthy and safe, for bringing me things to eat and drink in the middle of the night, and for making my stay here much nicer and more enjoyable than if I’d been just sitting around and waiting for SEEG testing to be over.

(Some of this blog entry applies to my wife as well. Teresa spent a large amount of time here in my hospital room with me, but she was also driving back and forth between the hospital and home, taking care of our dogs, spending a few nights sleeping on a lumpy chair here instead of our comfy bed, and doing her best to watch over me and make sure I was okay. I’m extremely glad that I married up.)

You all did a great job making sure that I was comfortable, tending to my needs, and I always felt like you truly cared about my well-being rather than making me feel like you had to do these things because it was part of your job description. (While Teresa isn’t here to back me up, I’m sure she appreciates what you did for her, too.)

I may have joked about it with you in person or in this blog entry (see: “my captive audience”), but I truly appreciate everyone’s willingness and even eagerness to listen to my stories. I like to think I’ve lived an interesting and unusual life and I truly enjoy being able to share with others. Usually for entertainment, occasionally for wisdom, but rarely just to hear the sound of my own voice. I definitely appreciate people not automatically clumping me into that last category.

I’d also add that while most of you may never have a “captive audience” to talk to, you have some amazingly interesting stories of your own and I’m glad that you were willing to share them with me.

Some of the nursing assistants talked about going back to school to earn a nursing degree. Do it. There are a few good reasons to wait (young children, ailing family members, money, etc.). There are also a lot of not-so-good excuses to wait. Don’t listen to the excuses. Do it. I’m completely confident in your ability to succeed.

I wish I could have said goodbye to a lot more of you (including some who visited just long enough for someone else to take a 15-minute break), but that simply wasn’t possible. If you’re reading this and we met during my stay, please pass along my best wishes and gratitude to anyone I missed who spent some time in Room 6029.

As a final note, I don’t know if a blog entry can provide written permission to share information without violating HIPAA guidelines, but you’re welcome to tell people that you met Shawn, the Assistant Scout Master from Season 1 of Beauty and the Geek, he was hard to recognize because of the large wrap of bandages around his head due to SEEG testing, and there’s a Beauty and the Geek channel on YouTube where you can watch the source of some of his stories. (That said, he isn’t planning to visit the hospital again for the sake of answering questions about the show, so you may be out of luck in that regard.)

I arrived at the hospital on Tuesday morning, they started reducing my medication levels fairly rapidly, and the test was scheduled for Friday at 11:00am.

I had one small seizure on Thursday night, barely enough to interrupt the middle of my sentence before I remembered what I was saying. There was another Friday morning where I paused while speaking, the nurse asked me if I was okay, and instead of answering her (I may or may not have been able to in the moment), I just pointed at the button by the bed that the doctors told me to press if I was having a seizure.

Then we got to neuropsych testing on Friday morning and everything kinda went off the rails from there. In the grand scheme of things, it might be difficult to categorize different parts of the experience within a scale of “good — bad — ugly”, given that all of my seizures are providing useful data about their point of origin and what our options will be to affect that specific point to reduce or eliminate future seizures.

During my previous visits to the hospital for seizure monitoring, we’ve used standard EEG testing: the little electrodes glued to my scalp. In those situations, the only seizures that registered during the testing were the big grand mal seizures where everything in my brain would flare up in the process. I got a phone call on Thursday night to explain that the tiny seizure I had, the one that barely affected me at all, was a really useful source of data.

By barely having an effect, that meant there was a flare of brain activity in a very small area. It didn’t expand to the point of affecting everything in my brain, just that one small area, which makes it easier to isolate the area where the seizure originated. (I had pushed the button, so they knew approximately when in the recording to view the brain wave patterns… what I didn’t realize is that the seizure that actively affected my speech for maybe 2-3 seconds actually lasted for 16 seconds from start to finish. Which means that all of the seizures I personally experience is just a fraction of the abnormal brain activity that occurs on a regular basis.)

So the doctor said that if I had a few more relatively minor seizures like that, we could potentially put me back on my medications soon rather than waiting for some bigger seizures to show up on the scans. Well, I knew that sounded good, so I was glad I didn’t have long to wait before neuropsych testing the next morning.

The testing… it could probably belong in all of the good-bad-ugly categories. It was a relatively simple process broken up into four phases. First, the neuropsychologist propped up an iPad in front of me.

Phase 1: name the image that appeared on the screen (zebra, vacuum cleaner, etc.)

Phase 2: say the word that appeared on the screen

Phase 3: repeat the nonsense word that I heard come from the iPad’s speaker

Phase 4: say the word that appeared on the screen

Probably the worst part of the test was Phase 1 because of the self-applied pressure involved. He said that they were basic images, things that I’d know (zebra, vacuum cleaner, etc.), and I just needed to name them. I knew that if I had a seizure, I might not be able to name something simple, so I bore down and focused really hard, trying to make sure that I wouldn’t have any trouble naming anything. And we knew that I was having a seizure when I couldn’t remember the word “funnel.” Or “clipboard.” Or “skunk” or “tiger.” (I think it was while the tiger was still on the screen that the tester asked if I heard him tell me to point at the ceiling. “No.” Did I hear him tell me to point at the door? “No.” Did he actually say those things? All I can say is that in that particular moment, if there were sounds coming out of his mouth, I haven’t the slightest idea what they meant.) So overall, in that first phase of the test, I think there were seven or eight individual seizures.

Things continued in Phase 2 as I stayed extremely focused on being able to reach aloud every word that appeared on the screen. Again, that level of focus probably led to additional seizure activity. And just like in Phase 1, every time the tester suspected I was having a seizure, he’d pause, hand me a sheet with some other images I was supposed to identify, then a sheet with some text that I was supposed to read out loud. The level of aggravation that all of this was causing… it was extreme. “I know all of these words and not being able to say words that I obviously know is really irritating!” Should we stop for a bit? “Nope, let’s keep rolling and get this over with!”

And then we got to Phase 3. Phrase 3… completely different. I was supposed to repeat the nonsense words that played on the iPad’s speaker and had zero problems the whole time. Why? No pressure. No stress about “I need to make sure I say the words that I definitely already know!” They weren’t words, just word sounds, and I had no problems repeating all of them.

Toward the end of Phase 3, someone came into the room with a syringe. In the syringe? Valium. “I don’t need valium to calm me down, let’s just keep going.” But the valium wasn’t for me—it was for my brain. The seizure activity they were detecting with the sensors inside my skull was pretty significant at that point and they didn’t want to push me into having a grand mal seizure, something that would be more detrimental than helpful, so the nurse connected the syringe to the IV in my forearm and started pressing down on the plunger. I could feel kind of an uncomfortable pressure in my arm as more of the Valium was forced into my system… and then I woke up several hours later.

In between those two moments, there was a (thankfully not grand mal) seizure that lasted over six minutes, the neuropsychologist took me through Phase 4 of the test, some people moved me from the chair where I was sitting back to the bed… I’m told I said some things about “pledging my undying love and affection” and “promising to always take care of the dishes,” but given that Phase 2 used single words, I’m a tad skeptical. That said, I haven’t seen any video to confirm or deny those statements, so without some form of proof to the contrary, I may have to make sure we’re constantly stocked up on dish soap.

I’ve spent a lot of time sleeping since we finished testing. Sure, some of that was due to a second dose of Valium administered through the IV, but the experience was extremely draining overall, both mentally and emotionally. But I’m also pleased to report that they’ve since started giving me all of my usual medications at their usual doses. We’ll be engaging in some different kinds of testing on Monday and possibly Tuesday, after which they could remove the electrodes from my skull, then send me home with 15 sutures in my head (one for each electrode insertion point) by the end of the week. Then there’ll be some analysis of the data, discussion about the best way to treat my seizures… and maybe some additional information about undying love and doing the dishes.

Overall, there are still a lot of unknowns about what’s coming over the next few months, but I think about it the same way I thought about what might happen after being admitted into the hospital for SEEG testing: “We’ll know when we get there.”

Could I have written something earlier? Of course.

Should I have written something earlier? Possibly.

Am I writing something now? … Pretty sure, yes.

Yesterday, I arrived at Abbott Northwestern Hospital at 5:30 in the morning. Fast forward about seven hours and I was awake and ready to be rolled up to my new hospital room where I’ll be residing for… for as long as it takes.

That’s the unfortunate thing about this process: I don’t know how long it’s going to last. I’m here, they’re reducing my medication levels, I’ll start having seizures, then they’ll eventually decide they have the data they need and I’ll be done. What’ll happen during that time and how long it lasts will be known when it happens.

In the meantime, my head is mostly covered in gauze—they inserted 12 electrodes into the left side of my head and 3 in the right side. (I don’t remember if I mentioned it earlier, but during my MSI testing, they did some language testing that normally only causes brain activity in the left side of the brain, but part of the right side of my brain was activated as well. Since the part of my brain that’s responsible for language is where these seizures are starting… juuuuuust in case, check and see if things might be starting on the right side as well.)

Aside from the gauze, there’s some discomfort from having things inserted into my skull and some swelling caused by foreign objects being inserted in places they technically don’t belong, all of which will go away over time. For right now, though, one of the sensors in my left temple doesn’t like it when I eat really solid or crunchy food, so my diet consists of things like pudding, ice cream, cottage cheese, sandwiches without eating the crust… all I need is to be maybe four feet shorter to become a toddler again.

Especially since I’m spending most of my time in bed with the exception of getting help to sit down on a toilet that they can roll up next to my bed. I opted to sit on my plastic throne for 10-15 minutes earlier tonight both to be somewhere besides my bed and also to appreciate a slightly different view. I’m fully aware that all of this is temporary: eventually, I’ll be able to eat whatever’s on the menu and walk to an actual bathroom under my own power, in which cause I’ll feel like a new boy! Or at least someone who can order a hamburger instead of pudding for each meal. When? Like everything else here in the hospital during seizure monitoring, it’s all just a matter of time.

I don’t remember how long ago the timeline got changed, but it’s been a while. And then life starts happening and writing blog entries gets shoved into the back of your head until a month later when you start thinking, “When’s the last time I wrote something? Oh gosh… life definitely started happening…”

The original date for the start of SEEG testing was June 17th, which didn’t work for the neurosurgeon, so it got pushed back until July 8th. And I don’t know where the scheduling conflict arose or for whom, but I got a call saying that July 8th wasn’t going to work anymore, so they were rescheduling the testing to start on June 10th instead. Is that coming up soon? Yes, it’s coming up very soon.

My current concern isn’t related to being nervous—my current concern is finishing everything that needs to be done before the 10th. I had a dental appointment about a week ago for the first time in two years, during which time they decided I needed a few fillings as well as a root canal. (So go get your routine dental cleanings done, kids!) That in itself isn’t a problem—this isn’t the first time my teeth have required some excessive work—but given the circumstances, it means I’m suddenly in a time crunch.

For those of you who’ve never had surgery before, a lot of dentists have policies regarding surgical procedures: you have to wait for six months before they start poking around in your month again. It’s not an industry-wide rule, but it makes sense: if you somehow get an infection from getting your teeth cleaned, that yucky stuff is going to get in your blood stream and head straight to the place where you recently had surgery. Getting an infection in my knee after having my ACL replaced? Wouldn’t have been a big deal. Getting an infection in my brain after staying in the hospital this summer? Yeah, okay, that could be considered a bigger deal.

And so I needed to schedule two additional dental appointments within the span of about three weeks, ’cause if it ain’t gettin’ done now, it may not get done until 2026. That sounds… unappealing to say the least.

If there’s anywhere I need to drive or errands I need to run, a similar issue arises. State law in Minnesota says that when you have an involuntary loss of consciousness, your driver’s license is supposed to be suspended for three months. Grand mal seizures definitely qualify as a loss of consciousness and they’ll be trying to induce seizures during SEEG testing for the sake of gathering data. So who’s got two thumbs and won’t be driving until mid-September at the earliest?

This guy! (Admittedly, that doesn’t have the same effect when you can’t see my thumbs pointing back at myself, but still…)

So if I need to schedule any other appointments or get something from the store that I’ll need in a month or two or just want to go cruising, I’ve got a limited window of time that seems like it’s closing faster and faster.

Granted, I accept that. I’m not upset with needing to get everything done NOW NOW NOW NOW NOW!!! I much prefer having SEEG testing scheduled a month sooner than originally planned, get it done and move on to the final step of full-blown brain surgery, then see where things go from there. That also means I have a shorter period of time to go shopping for hats or buy sunscreen for my scalp (they’ll need to shave my head so there’s no hair in the way for putting the sensors into my skull in June or putting a device inside there a month or two later…), but I’ll survive. If I don’t—if the lack of something to wear on my head is what finally kills me—then it was bound to happen pretty soon regardless. There are a lot of corners of cupboards to hit or floors to slip on or just swallowing my spit funny… something was gonna do me in. Since it hasn’t yet and presumably won’t soon, I better make plans to survive a little while longer, which means I better not wait until next year to get my teeth fixed.