Me, Myself, My Brain & I

  • Catching up: Case Study 2.0

    With all of the data that Dr. White gathered during SEEG testing, I became a case study for the second time. Back on August 27th.

    Yes, that’s how long ago I could have provided a legitimate update. Well, maybe August 28th, since that’s when I had an appointment with Dr. White to discuss the results of the surgical conference the day before. Thankfully, I wrote down some notes that night, so I can reference that to describe our conversation.

    For starters, he explained how his presentation involved a 33-slide PowerPoint presentation. Some of it was extensive data, but one slide displayed my advanced college degrees, the fact that I’m married, and I work as a proofreader. (The slide didn’t have Teresa’s picture on it, so Dr. White apologized for it being an incomplete presentation.)

    Everyone involved in the conference agreed that the RNS device was the best surgical option. However, there was an extensive discussion about where to place the electrode(s) to best prevent seizures in the future. (The wording of this sentence is intentional, which I’ll explain a little later.)

    The final decision was to place a narrow strip on the surface of the brain with a single electrode going further inside. Dr. White explained that once you get below the surface, a lot of the brain is “white matter,” which he said was similar to a network of wires that send signals in all different directions throughout the brain. In my case, a scan showed some gray spots in that white matter (going all the way back to my time in the womb, my brain didn’t develop properly and those gray spots are the lesions that formed in the process). The single electrode will end up right next to that batch of gray spots.

    Thus, I’ll end up with two holes in my skull: one for the electrode and one for the strip (it can be folded over and slid inside, so it won’t require cutting a chunk out to put it in place). The RNS device itself will be located on the outside of the skull. The neurosurgeon will make sort of a groove for the device that curves to match the curve of the skull; it’s the size of a large postage stamp and maybe a quarter inch thick. Not very large, so it won’t require a gaping hole in my head.

    The fact that it’s on the outside will also make it easier to replace the battery from time to time. Depending on how active the device is, the battery can last for 5-10 years, then they’ll just need to make an incision in the scalp to replace the battery. (I asked about buying a hat with solar panels to keep it continuously charged, but it sounds like that technology hasn’t been developed yet.)

    As I said earlier, “in the future” was intentional because for the first month or so, the computer will basically be in “read-only” mode. It’ll detect seizure activity, gathering information about what happens when my seizures start. (I’m also supposed to have something that I can swipe over my head when I’m having a seizure so it knows that it should be gathering information at that moment in particular. Exactly what that thing will look like or how I’m supposed to keep it handy for swiping at any given time is up in the air—someone will be able to give me that information shortly before the surgery actually happens.)

    After that initial stretch of time, they’ll make the computer active, at which point it’ll act like a defibrillator: detect brainwaves misfiring in a way that it was detecting previously, then send a little shock to the electrodes that should jolt that activity back into a more normal pattern. Mind you, the computer can detect that activity immediately, whereas it takes a few seconds for things to flare up to the point where I realize anything is happening, so if everything is working properly, the only indication I’ll have that the device is doing anything will be a reduction or possibly a lack of seizures.

    After about a year of the device being active, we can talk about a reduction of seizure medication (I’m currently taking three different kinds at different times of the day, so the less I have to take, the happier I’ll be). Also, as it limits seizure flareups, those flareups will probably get smaller and smaller over time. My brain activity may never stabilize entirely, but the abnormal activity should decrease in intensity.

    Post-surgery, I’ll likely be in the hospital for just a day or two. When I get home, I’ll have a lifting restriction of 10 pounds (I had the same restriction after SEEG testing and I broke it after just a few days for the sake of carrying dogs up and down stairs, but I definitely don’t want to strain and cause something to pop, so I’ll probably be more diligent about following weight restrictions this time around). I’m also not supposed to drive until I get a doctor’s permission—I have no idea how long that restriction might last, so it’s probably for the best that I currently work from home.

    That appointment was scheduled for an hour; it lasted for an hour and twenty minutes. (That’s what happens when your doctor is both extremely thorough and extremely excited when talking about seizures, brain surgery, etc.) The time between the appointment and writing this? Much, much longer than an hour. Other things have happened between then and now, but I think this was the most significant event that I wanted to write about. Whether I have enough time to catch up on anything else before surgery tomorrow… you’ll find out when you start reading the next blog post.

  • The downsides of distraction

    Over three months and nary a peep from me on here. That’s not to say that nothing’s happened since then—far from it. However, I’ve managed to keep myself busy doing stuff that’s been pretty inconsequential. I think things started going downhill when I found a new game for my phone that I found on the App Store.

    Two things to note: It’s very rare for me to pay money for a game, either to get rid of ads or to get bonuses that help me advance in the game. It’s also very common for me to play a game on my phone to excess, which can enable me to advance just as well as people who are coughing up loads of cash to play.

    That said, playing a game for hours per day takes a toll. I didn’t have as much time in the day to do things; I didn’t have much motivation to accomplish much more than what little I was doing. It’s much easier to see in retrospect that while I may have felt some level of accomplishment because of what I was doing, it wasn’t worth the time I was using to do so.

    Putting aside that feeling of accomplishment, what did I actually accomplish? Not much. Any progress I made is stored in the app; if I never open it again, the progress is basically worthless. (Three times now, I’ve gone through the process of investing a lot of time and zero money into playing a game, then finally deciding that it’s not worth all of those hours per day. Given the level of progress I made, I don’t quite have the heart to delete it entirely, but I tuck the game into a folder several layers back on the second screen of my phone. Three apps that I haven’t opened since I finally decided to stop playing and regain all of that time I was using each day for what was essentially a distraction. Nothing to show for all of that time and effort outside of pixels on my phone screen.)

    Spending several hours a day over a long period of time means there are many days, possibly weeks that I’ve invested into staring at my phone and tapping the screen over and over again with very little (if anything) to show for it. How much of that time can I get back? Zero. Zilch. Nada. None of it.

    Could I have put that time to better use? Most likely. Is it too late to apply the time to said better use? Most definitely. So I have to shrug it off, accept my losses, and move forward. And part of that moving forward means doing a lot of writing in the next two days.

    Why two days? Because on the third day, I’m rising from the dead. Wait… no, sorry, my bad. It’s because on the third day, I’m going back to the hospital for another visit with the neurosurgeon in the OR. Which means I have a lot of stories to tell and not much time to tell them before then, so distractions will be thoroughly unwelcome for the next few days. I like to think that the upside of avoiding distractions will be worth it.

  • Where do our stories go when we die?

    I’m not trying to be fatalistic when I ask that question, but it’s something that popped into my head recently. I spent hours upon hours talking to nurses and nursing assistants in the hospital, telling them stories about different aspects of my life: seizures, times I’ve been in the hospital, all of my years in school, being on Beauty and the Geek… who knows what else? And now that I’m out of the hospital, those same people might hear similar stories, but only similar stories. Mine? Never again.

    When I’m finally gone (hopefully not anytime soon), if they don’t remember any of my extended monologues, said monologues are gone with me. Admittedly, some of the listeners might disagree, but I like to think I was sharing some really good stories with them. So what are my options?

    1. Hope they remember the stories and share them with others.
    2. Hope that my brain survives when me, myself, and I all die.
    3. Share the stories with more people now that I’m out of the hospital.
    4. Let the stories die with me.

    1 and 2 seem unlikely at best, but I can still choose between 3 and 4. The third option has a nice ring to it, especially since I rewrote it multiple times (my first few attempts didn’t ring nearly as nicely). So even though I created this blog so I could talk about my journey toward brain surgery, hoping that maybe it could provide some insight and/or comfort to someone else who is or who knows someone taking a similar journey, I may end up being self-indulgent and write about some other topics in the future. While people reading this blog might not be a captive audience like the nurses and nursing assistants in the hospital, this may be the only way for me to share any stories before they all die with me. Unless someone reading this blog finds a way to preserve a person’s brain after they die, in which case… I don’t know how well my brain might be able to share stories without the rest of me (especially since I don’t think it has fingers for typing on a keyboard), so this may still be my best option. You all have both my apologies and appreciation in advance.

  • Let’s call them “Discharge Suggestions”

    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.

  • The book of life has many chapters

    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.

  • 2-4-6-8, Part 2

    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!

  • Every story has a beginning

    Since I enjoyed telling stories in the hospital so much, I decided maybe I could tell some stories to a webcam at home, too:

    https://www.youtube.com/@shawnbakken6048

  • Potential side-effects of electrocution

    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.

  • 2-4-6-8, now it’s time to stimulate!

    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.

  • To my care staff

    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.)