Me, Myself, My Brain & I

  • NEAM, Day 2: She said yes!

    Back in 2018, I was volunteering at Camp Oz, a week-long summer camp for kids with epilepsy. Aside from camp counselors, adults volunteer were assigned to help with smaller groups (I was tagging along with a group of about 10 boys in the same grade who were sharing a cabin).

    Volunteers met together at the beginning of the day to get their group assignments and receive a camp t-shirt. I also spoke to someone from EFMN who was in charge of organizing the volunteers and she told me a story from a few years ago about a young camper who was really depressed. He was thinking about his future and believed without a doubt that because he had epilepsy, there was no way that he’d ever get married. The volunteer working with the camper’s group that day? A man with epilepsy who showed the boy his wedding ring.

    Thankfully, I never had to deal with any children suffering from that level of existential crisis. I think the worst thing that came up while I was there was when the group went to the archery range and offered to let me participate—more of my arrows stuck in the ground rather than the target. That said, in a situation similar to that one from years ago, I could have showed a camper my wedding ring as well.

    Being married has truly been a blessing (and not because I have epilepsy). For a long time, I was convinced that I was going to be an eternal bachelor (and not because I have epilepsy). But I met Teresa and that mindset eventually went out the window. I didn’t want to be single anymore—I wanted her to be my wife. I know that’s true because not only did I ask her to marry me, I went the traditional route and first asked her father for his permission to marry her; in both cases, even though I was pretty sure the answer would be yes, actually asking the question was terrifying.

    When I was going to ask Teresa’s father for permission, we were spending the weekend at her parents’ house (they live about three hours away, so it makes more sense to stay for a few nights rather than trying to make it a one-day visit). I was struggling to think of how to bring up the topic with him without just blurting it out over the dinner table. And then a window of opportunity revealed itself.

    Our car had shown a warning light indicating that the air in one of the tires was low. I decided to ask for his help: the two of us could go out to the car with an air compressor and I could ask him for his permission to marry Teresa then. So what happened?

    He told me about a nearby gas station that had an air hose I could use.

    Since that plan didn’t work, I eventually asked him while he was helping me load our bags into the car to head home. I had no idea that so many butterflies could exist in a single stomach, but of course he said yes and gave me his blessing to marry his daughter.

    One question down, one to go.

    But before describing how “one to go” eventually happened, I want to explain that it was a happy event, but the jewelry store that sold us Teresa’s engagement and wedding rings… I’m not mentioning its name for a reason.

    She and I had talked about picking up the engagement ring, then going to eat at a fancy restaurant where I could pop the question. I was at a complete loss about how I might do it, but before going into panic mode, we had to pick up the ring.

    We had worked with a salesperson there named Izzy: she helped Teresa design the engagement and wedding rings, she helped me pick out the big diamond for the middle of the wedding ring… she was thoroughly engaged with us throughout the entire process and we’re extremely grateful for her help.

    Then we got to the jeweler that morning, asked to see Izzy, and were told that she no longer worked at their establishment. “But you can work with this lady who smells like booze at 10:00 in the morning instead!” Thankfully, the design process was over, it was just a matter of picking up the engagement ring that day and the wedding ring when it was finally constructed.

    When they found out we were picking up an engagement ring, someone offered to get a little pillow that I could kneel on when proposing. The lady could have just as easily said, “Do you want to prove to your future wife that romance is dead?” Needless to say, I declined the offer. We just picked up the ring and left.

    Since Teresa had Izzy’s number, we called her as soon as we got out to the car, which is how we found out that Izzy had called in sick earlier that morning because she was suffering from severe back pain. While she was in her chiropractor’s waiting room, she got a call from the jeweler… they fired her over the phone. So yeah, that’s why Izzy wasn’t there to help and they offered us the cheap boozy substitute in her place.

    While that didn’t prove that romance was dead, it still really ruined the mood of the day for both of us. As a result, instead of going to a fancy restaurant, we picked up food from Panda Express on the drive home. And instead of worrying about getting down on one knee in front of a bunch of strangers, I proposed to her while sitting on our bed with our two dogs, which (not surprisingly) wasn’t nearly as scary.

    She said yes!

    And it turned out that none of those strange and somewhat unfortunate circumstances mattered. We got engaged, we got married, and we’ve stayed that way for close to seven years now. So if there are any young kids with epilepsy out there who are concerned that they might never get married, don’t worry about having epilepsy, how many butterflies your stomach can hold, or whether romance is alive or dead. If you and your partner love each other, you’re off to the best start possible.

  • National Epilepsy Awareness Month, Day 1

    Welcome to November 1st, the beginning of National Epilepsy Awareness Month (NEAM). This is my second attempt to write something commemorating today—thankfully, the first attempt was a brief effort that ended when I had to leave to run errands with Teresa and our dogs. (One of the downsides of brain surgery is that the doctors want me to have people around for safety’s sake… thankfully, the dogs are good company when we’re out in the car while their mama is getting a manicure in the nail salon.)

    But that actually is a good segue into what I wanted to write. NEAM is about “epilepsy awareness,” but epilepsy isn’t like some separate entity that’s floating around in the corner of the room. “Epilepsy awareness” means being aware that people have epilepsy.

    That was basically the point of the ONE in 26 campaign. Approximately 1 in 26 people have epilepsy. If you live in a small town of 2,600 people, 10 of them could have epilepsy.

    I’m not suggesting that you need to find those 10 people. My suggestion is actually for those 10 people: be willing to make other people aware of you. It might be easy to convince yourself that telling people would immediately turn you into a burden to everyone who knows you. If that was truly the case, I wouldn’t have spent part of my afternoon in the car with the dogs. My wife is aware that I have epilepsy and she loves me for being me. In that light, here’s a short list of reminders:

    1. Your brain not working the way most people’s do doesn’t make you “less than.”
    2. You shouldn’t try to make your epilepsy journey a solo trip.
    3. People may care more than you give them credit for.
    4. If you think no one else does, know that I care about you.

    So that’s my message for today: don’t just be aware of the existence of epilepsy. Be aware that those 1 in 26 people with epilepsy are still people. If you’re one of those people with epilepsy… you’re still people. Allow people to be aware. Your life will be easier and richer because of it.

  • RNS: YMMV

    There’s a limit to the number of characters that’ll fit in the title of a blog entry, so the initials stand for

    Responsive Neurostimulator: Your Monitor May Vary

    When I was getting prepped for surgery, a representative from NeuroPace showed me the monitor I’d be using during the time when the RNS device is in read-only mode: Model 5106.

    Up to that point, I only had generic information about the function of the monitor. When the rep asked me what I knew about the first part of the process, I could explain exactly what it was supposed to do—the computer won’t actually prevent seizures for the first month or so, etc.—but this was the first time I’d actually seen what I’d be using before the device becomes active. And because it was mildly irritating that I couldn’t find any pictures online and no doctors would tell me what I’d be using, I decided to take some pictures to show all of you. (Just remember that anyone who has an RNS device installed may receive different hardware to work with than what you’re seeing below.)

    First off, the tablet and wand. They said that the RNS device can store about a week’s worth of seizure data, so upload the information up to the cloud every day. Hold the wand (that handheld device above the tablet) against my head next to the RNS device, push the “Get data from your Neurostimulator” button, then just wait as it goes through the uploading process.

    The wand sits comfortably against the curve of the skull—the tablet indicates when it’s close enough to the RNS device to upload the information.

    I think I previously mentioned the bookmarking process when I’m having a seizure. Slowly swipe the thingamabob over where the RNS device is for about three seconds and the computer will be able to identify when the seizure is happening and thus what kind of brain wave activity should cause the device to activate to prevent seizures in the future.

    I was never able to find an image online of the thingamabob. Is it tiny? Is it the size of a computer mouse? Do I need to keep it on a bracelet or something so it’s immediately available to swipe over my head when I’m having a seizure? And it turns out that it’s a little 2″ magnet with a carabiner that I keep attached to the front belt loop of my jeans. I need to be careful when walking near metal things (washing machines, door frames, laptop computers, sinks, etc.), but if the RNS device does what it’s supposed to do effectively, it’ll all be worth the hassle.

    And I just want to clarify again that if you or someone you know receives an RNS device, that monitoring hardware may not be the same is mine. Nevertheless, I thought people might appreciate seeing what NeuroPace gave me to use for this first part of the process that’ll hopefully limit or prevent seizures in the future. Once this first part is over, I’ll need to give it back, but again, if using it effectively limits or prevents seizure activity, I’ll have no problem with returning it.

  • Me, Myself, My Brain & I… and now introducing Sparky!

    As I mentioned before, I was told by multiple people that I need to name my new RNS device. My little brother and his family contacted me via FaceTime while I was in the hospital, so his daughter and son were my focus group when I thought of a possibility. It had popped into my head all of a sudden, seemed to fit, but I’ve had plenty of bad ideas pop into my head in the past and I wanted to make sure it wasn’t one of those. It met with a 100% approval rate from the focus group, so I’d like to introduce to everyone…

    SPARKY!

    (He’d take a bow, but he’s in a fixed position, doesn’t have a waist, and is too modest to want that level of attention anyway.)

  • “She’s got a wicked right cross…”

    The most recent issue technically started happening yesterday, but became much more noticeable today. It was a little surprising in the moment, but not surprising in retrospect.

    About 15 years ago, I was playing soccer and put myself in an exposed position with someone who was obviously a dirty player. He had no issues with running into people rather than trying to play the ball, so in my case, my leg and the soccer ball were close enough that he decided to make my knee his primary target. I was able to limp off the field under my own power, but not much more than that.

    I woke up the next morning and knew that something was wrong because I had a kneecap when I went to bed. The swelling was so severe around my knee that you could barely see it. (That’s what happens when someone kicks you right above the kneecap and a scan of what used to be your ACL looks like the bottom of a jellyfish instead.)

    But what was unexpected was how in maybe a week, I started developing a bruise around my ankle and heel. Courtesy of gravity, the fluid that had originally pooled around my knee moved further down my leg, making a bruise show up there.

    After surgery on the left side of my head, I’ve been sleeping on my right side. We saw a little color and a little swelling in my left eyelid yesterday. No pain, just a little discomfort from the pressure from the extra fluid there. This morning, I can see a slight pinkish arc in the bottom of my left eye’s field of vision because my lower lid has started swelling to match the upper lid. The coloration is getting darker… it’s starting to look like a pretty respectable black eye. (Rumors inside the house have been swirling around about how if I tell people that Teresa gave it to me, I may end up with a real one.)

    And in a way, it’s almost worse than the scars on my head. Those may be more severe and scary-looking, but they can also be covered up by a hat. What can I use to cover up a black eye? My glasses? Nope, that thing’s on full display until it eventually fades. How long will that take? Much like a lot of things in this whole process, I’ll find out when it happens and I have absolutely zero power to speed up the process. But on the plus side, at least my eye is fully functional and I don’t need crutches to get my face to move around.

  • “Excuse me, I believe you have my stapler…”

    According to the release notes, I was allowed to remove the bandages on my head after two days. Wake up the second day after surgery, realize that the bandage is flopping around at the top of your head, decide it’s time to remove it. Made sense in my head, so that’s what we did. (Note that if seeing staples in a person’s head might make you feel squeamish, you should move on to a different blog post…)

    And then I was immensely glad to have someone to move the bandages because while it was able to flop around at the top of my head, other parts were stuck significantly more securely. Maybe it was because of additional adhesive, maybe there was dried blood caked in the gauze… it wasn’t a smooth removal process. But it was eventually removed and we got to see my new scars in all their glory!

    Well, scars contained within the confines of the staplers attached to my head, anyway… but still glorious! If you don’t believe me, you can take a look for yourselves in some no-dried-blood-caked-in-the-gauze pictures, courtesy of Teresa:

    I suppose I could have called this something like “Chicks dig scars, right?” But before I saw what was under the bandages, Teresa mentioned something about the fact that they used staples. That wasn’t a big deal to me.

    Flash back to December 2001. I was in the epilepsy ward in United Hospital undergoing EEG testing and met someone else there who’d had brain surgery shortly before I arrived. In his case, they did a resection—removing a section of brain tissue—in an attempt to limit or prevent his seizures. The amount of cutting his surgery required was pretty extensive, so there was a number of curvy scars on his head that were closed up with staples, something I’d never seen before. And he almost wore it like a badge of honor to say there were 60 staples in his head.

    “You might have 60 staples here…”

    It’s a possibility, I haven’t zoomed in on the pictures to check, but there’s a very large difference between my head and his back in 2001. Think of it like the difference between staples that can hold a maximum of 12 pages together and staples that can be used to attach upholstery to furniture. What that guy’s head looked like and what mine currently looks like are very, very different in scale.

    So I was walking the dog earlier tonight, thinking about writing this blog post and whether the pictures above might lend to potential dry heaves in potential readers, then I thought about Milton’s red Swingline stapler in Office Space. It’s quite possible that the only common denominator between this post and that movie is staples, but sometimes that’s all you need to hold two things together.

  • There’s no place like home

    I passed all the benchmarks they set, so Teresa and I arrived home around 4:30 on the 23rd. (We were was ready to leave by 3:00—about 24 hours after surgery ended. Staying to get pain meds could have potentially taken an hour or more in the hospital’s busy pharmacy, which would have put us in the middle of rush hour traffic. Since I had taken a total of 4 extra-strength Tylenol for the post-surgical pain that spiked at about level 3 out of 10, we skipped it, avoided rush hour, then added some time by stopping at a restaurant for a late lunch.)

    We had to take care of some packages (and by “we,” I mean “her” for the most part, given my 10-pound lifting restriction for the time being), pick up the dogs to bring home from daycare, then catch up on some TV shows that we hadn’t had the time to watch before tonight.

    I also took an hour to attend an online Adult Connect Group with EFMN, use Zoom to show off all the nifty bandages stuck to the left side of my head, teach people a little about the whole RNS system… I made a point of not taking over the group and gave people the chance to talk or ask questions, but dammit, I’m a wealth of information! And I’m happy to share that wealth with other people (whether they’re a captive audience or not…).

    Speaking of which, before we left the hospital, someone came into the room to take out the trash, looked at me, pointed and said “Famous Guy.” I might have only spent one or two shifts with any particular nurse or assistant during SEEG testing, but people who clean the rooms stop by way more and this lady remembered my spending a week and a half there (same hospital, same floor) back in June.

    I’ve now had multiple people tell me that I need to give my RNS device a name. One person had two separate devices that she called “Zippy” and “Zappy,” but if I’m gonna do this, I’m gonna do it right. And no, I’m not calling it “Right” to make some kind of meta statement about my usual level of rightness plus the fact that it’s on the left side of my head.

    Even though it’s late and I’m tired and ready to sleep in my own bed tonight, I need to make sure I can unload RNS data up into the cloud using a certain tablet that they gave me. Unfortunately, the manual says that it can take two hours to charge fully… which I didn’t read until about 10:30, then spent ten minutes figuring why the stupid thing wouldn’t start. Why, yes, user error is a thing! And that would make it a little too ironic to call my RNS device “Right.”

  • “And it’s not just because of the hospital food.”

    That’s right, I’m ready, eager, willing, and potentially allowed to go home later today. The surgeon’s assistant came to visit me this morning and explain that there are a few benchmarks they want me to reach. So far, I’ve only taken Tylenol a few times for pain, nothing stronger; I ate a good dinner and breakfast with no nausea (some of the bacon was crispy enough to make my head hurt a little, but it wasn’t like SEEG testing where the implanted electrodes made chewing uncomfortable enough that I couldn’t eat the crust on a PB&J). They also want me to start walking around without getting dizzy and use the bathroom (which wasn’t really an option until they removed the catheter this morning)… there may have been one or two other things, but reaching those benchmarks could mean I’ll get to sleep in my own bed tonight. I’ll just want to be sure that I sleep on my right side and keep the left side of my head off the pillow.

  • I have a doohickey in my noggin

    Although not surprisingly, some medical staff members don’t consider that a sufficient response to the question, “Do you know why you’re in here today?”

    The current worse parts of the day: relatively mild discomfort in said noggin and keeping a little oxygen sensor over the tip of my right ring finger, making the process of typing blog entries a lesson in patience and a reminder of what might happen if I lost that finger and could only count up to 19 using my fingers and toes for the rest of my life.

    Some of the current best parts of the day (a very incomplete list): brain surgery is finally in the past rather than looming in the near future; Teresa has been keeping me company all day (with the exception of in the OR during the surgical procedure… at least that’s what I’ve been told…); I have my laptop, which allows me to provide people with an update about how me, my noggin, and my new doohickey are getting along together, and I’m easy to take care of.

    That last statement is according to the nurse who was getting me prepped before surgery. I had no problem answering her questions, aced the cognitive test (I’m exceptionally good at providing my name, birthday, squeezing people’s fingers, etc.), and was pretty relaxed when going through each step of the process.

    “You’re pretty easy to take care of… that’s a compliment.”

    “I figured. ‘You’re pretty easy to take care of and it sucks!“

    But I had nowhere else to go this morning and Lord knows being a nurse in a hospital can be a gigantic bundle of nerves, irritation, frustration, whispering quietly to yourself that they’d never find the body… why make things worse?

    So overall, it’s been an exceptionally unusual and not terrible awful day—the first of many, many more to come.

  • No animal sacrifices, please

    A lot of people have reached out since hearing about surgery on the 22nd and offered a variety of things that I’m happy to accept: thoughts, prayers, love, blessings, best wishes…

    But a man has to draw the line somewhere.