Category: Epilepsy

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Epilepsy Awareness Month, Day 2

November is NaNoWriMo (National Novel Writing Month). I’d like to be consistent and focused enough to write 50,000 words in here during the next couple weeks, but I’m aiming for at least something each day. If I can’t, I can’t, but even Day 2 is more than the last year and a half, so I think I’m already doing a great job.

I was officially diagnosed with epilepsy in 2000 and we found a good medication combination to treat them by the beginning of 2002. I’d been having blackouts every few months (during those times, I’d function relatively normally—I even told my mother how to recognize if I was having a blackout while having one). Over fifteen years without seizures has been a true blessing, one that only some people with epilepsy receive. Some find medications that reduce their seizures to two or three a day and that’s as good as it gets. I sometimes take my situation for granted, but I should always remember how fortunate I’ve been that my epilepsy has been controlled and it’s not creating limits for me. I can drive, I can travel, I can run errands on my own. Many, many things that are simple and average and completely normal, yet also blessings.

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Epilepsy Awareness Month, Day 1

There is plenty that I can write about this topic, but I wanted to start out by making sure I had changed the name of the category “Head Case” to “Epilepsy.” It was kind of a cute pun when I thought of it—a clever play on words, hee hee hee—but epilepsy isn’t a joke. It’s a condition that one in 26 people have, which is why I posted a link to the website below. Plus if you take the time to watch the video, you might see someone familiar. And you might see me in it, too.

onein26.org

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Share your stories

I went to a Thai restaurant last week and they gave us fortune cookies at the end of the meal. I opened mine up and was really disappointed: it was no good for the “in bed” game and seemed to imply that I’ll be developing Alzheimer’s Disease when I get older. It wasn’t until a couple days later during a long walk that I wished I had kept the fortune instead of leaving it on the table when we left. It said something along these lines:

Share your stories with others so they can remind you when you forget.

“Great, I’m going to forget everything when I’m old.”

But during that long walk is when it occurred to me how poignant that fortune actually was, given how much of my past I’ve already forgotten.

I know I’ve probably talked about this before and also probably mentioned that it makes me a little uncomfortable, but I’m sharing nonetheless. This may be intriguing, it may be relatable, it may be nonsensical. I may be sharing it with you, I may be sharing it with others, I may be sharing it with “The Cloud”. (Given that the Internet is forever, that’ll help me remember just as well as telling other people.)

Anyway! The shortest and most likely explanation for the lack of memories is because of drugs. More specifically, medications to prevent epileptic seizures. And as a reminder, epileptic seizures are caused by excess brain activity, like neurons shooting sparks all over the place so that other neurons can’t fire properly.

As great as technology has become over the years, there are a lot of things we don’t know about brains and brain chemistry. Thus, when the doctors weren’t sure exactly what was causing my seizures (I’ve had CAT scans done on my head that show a very pleasant and non-damaged-looking brain), they tried a handful of different medications to see what would work.

I honestly don’t know how many we tried. I’d guess five, but that’s just a guess. One thing I do remember is that I was taking toxic doses of a medication at one time, but the doctor thought it’d be okay because I was “a big guy.” Turned out that wasn’t the winning combination for preventing seizures, so we moved on to a different kind from there.

Lots of different chemicals plus lots of brain cells, stir up the pot, see what kind of mixture we get and the result was a hack job on my long-term memory pre-2002. (I spent about a week and a half in the United Hospital epilepsy ward with a bunch of wires glued to my head and we were trying to induce seizures, figure out where the excess activity was originating. It worked well enough that we found two medications—lamictal and depakote—that have kept me seizure-free since April of 2002.)

As a side-note, if any of you has ever wondered why I don’t attend any of my high school (’95) or college (’99) reunions… there’s a reason.

Someone once tried to tell me that my problem wasn’t out of the ordinary, that a lot of people forget stuff from their high school and college years when they get older. I think an apt comparison to that conversation would be to tell someone with depression, “Hey, everyone gets sad once in a while.” Not at all offensive and trivializing, right?

I actually kept a journal for a while in high school. I found it in my desk one afternoon, opened it up and read what might as well have been someone else’s autobiography. Aside from my handwriting, there was nothing familiar about it.

When I was eating my lunch one day during law school, someone snuck up to my table and sat down. She was a sophomore at Blake (high school) when I was a senior and we were on the verge of being an item at one point. We talked for a couple minutes and at one point, she asked for my forgiveness. Apparently, she had done some really shitty things to me that year. As it turns out, it’s really easy to forgive someone for something when you have no idea what it was. (Conversely, it can make other people really pissed off when they ask for an explanation about something and you have no idea what they’re talking about.)

Will my memories ever come back? I doubt it, but like with any problem, you accept that it happened and move forward from there. Share the few stories I remember, share the new stories I’m experiencing… this could be like writing a new version of my autobiography. Except this time, I’ll be starting in the middle of Chapter 12.

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What are you most proud of?

Someone once asked me in a job interview that question: “What are you most proud of?” It was surprisingly one of the most difficult questions anyone’s ever asked me. Not because I don’t have things in my life to be proud of, but because of how few I actually remember.

I imagine it’s somehow related to my having epilepsy. The most likely cause—my own theory and what I usually tell other people—is that I did a lot of medication-hopping during the early 2000’s. My body was becoming acclimated to dilantin, which I started taking in 1991, and I’d been having minor seizures for a few years that escalated to blackouts that would last a couple minutes.

We needed to find a replacement since the older stuff wasn’t working well enough anymore, so we tried a variety of different drugs and different combinations. At one point, the doctor increased the dosage of one medication (I think it was Trileptal) to toxic levels, but thought it would be okay since I was “a big guy.” Nothing worked. I was still having seizures every two months or so.

After having a bunch of wires glued to my head for a week and a half in the epilepsy ward at United Hospital in St. Paul, the doctors found the area in my brain that was the source of the overactivity (flare-ups of overactivity that spread to other areas of the brain is what was causing the seizures) and found a pair of medications at dosages that have kept me seizure-free for almost 12 years.

But the point of this story isn’t “Yay, no more seizures!” It’s “I don’t remember a lot of stuff before medication-hopping!”

I was chatting with someone online about this once and she had no idea how frustrating it gets. I tried to explain that I don’t remember a lot from high school and college. People will tell me stories about things we did together and I’d have to smile and nod because it’s a complete blank. I kept a journal for a while when I was younger and reading it is like reading someone else’s autobiography.

She insisted that a lot of people forget things from when they were younger, but it’s not the same. Most people would remember standing on top of a mountain and looking off into the distance when you’ve been hiking in New Mexico for ten days. Three times. (I vaguely remember part of the second trek because there were dark clouds passing below us and one adult in our group was talking on his cell phone.)

I’ve been scuba diving in the Florida Keys for a week or so and remember that our guide gave me the nickname “Indy” (I was standing next to a kid wearing an Indiana Jones t-shirt) and he had one of those safari-style hats with a strap under his chin so he could wear it while we were underwater. That’s pretty much it. My dad was my diving buddy and has plenty of stories to share about what we did. I smile and nod. That’s all I can do.

When the interviewer asked me what I’m most proud of, I told her it was earning my Eagle award in Boy Scouts. It’s an easy default answer, but I don’t remember it. I don’t remember my high school graduation or getting my degree from Kenyon. I vaguely remember the graduation ceremony from law school, but that could be in part because the featured speaker was putting people to sleep. Literally. People were falling asleep while he was talking about “justice” and “rule of law”. That’s all I remember, but that’s one thing I don’t blame my brain for—a majority of the audience was completely zoned out.

There are plenty of things I can recall since then, but I’m not sure whether they fill me up with a sense of pride. That’s not to say they haven’t been significant:

  • Being on TV.
  • Throwing up on TV.
  • Various encounters with people who recognized me from TV.
  • Auditioning at the local community theater for the first time and getting the lead role.
  • Celebrating after scoring my first goal in an adult soccer league. I played defense, so it took me two years. (I don’t remember the goal itself, just celebrating.)
  • Screwing a video camera down onto a tripod, finding out it wouldn’t sit flat and I didn’t have time to adjust it, so I filmed my older brother’s wedding at a slight angle.
  • My graduation ceremony from Augsburg, even though I wasn’t actually done for another few months. (My final MBA course ended in December, but graduation ceremonies were only in the summer.)

So the question remains: What am I most proud of? Or rather, what can I remember that I should be most proud of? Unfortunately, my answer is still that I’m just not sure. But who knows? Maybe someone will read this, think of a good story about my past, tell me about it and I can start using that as my default answer instead.

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A reason for me to celebrate V-Day

A conversation with my uncle this afternoon brought me back to high school when we performed the musical Do Black Patent Leather Shoes Really Reflect Up? I played Father O’Reilly (I know, I totally look like an Irish Catholic priest) and I had a few solo lines during one of our big numbers:

The patron saints want your veneration.
They can give you a hand if you give ’em a call.

Why did this pop into my head? Because he informed me that St. Valentine is also the patron saint of epilepsy.

Regardless of my relationship status, that’s something that I have a lifelong bond with. Unfortunate, but I’ve survived this far. Survived to the point of not having a seizure in close to 12 years. It’s possible that my brain has become addled during that time—St. Valentine isn’t the patron saint of brain-addling, so he’s no help there—but at least I’m functional and that’s something I’ll always appreciate.

I promised myself I wouldn’t make any callous seizure jokes at the end of this because I really am happy that things are going as well as they are. I met someone in the United Hospital epilepsy ward back in 2001 who had dozens of staples in his head because they cut out a chunk of his brain. I’ve got a small scar on my forehead from running into a volleyball standard in fifth grade. That’s how well things are going for me.

So now I’ve missed two holidays that I’ll have to celebrate belatedly. One is St. Valentine’s Day and giving thanks to the patron saint (or just giving thanks in general). The other is 50% Off Chocolates Day because I didn’t make it to the store today and it’s too late to head out there now. That’s one I’ll definitely be celebrating tomorrow.

P.S. — In case you’re wondering, the collision with the volleyball standard didn’t cause any brain trauma. I’ve had a couple of CAT scans done on my head and they’ve revealed no physical abnormalities. Plus the scar is on the left side and the excess brain activity is on the right side. We don’t know why the seizures are happening, but they happen. Happened, past tense. I think life is better that way.

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Ten seizure-free years and counting…

This might not be the actual date, but it’s the one I’ve chosen to celebrate the 10th anniversary of my last “involuntary loss of consciousness.” I haven’t had a blackout in a decade. My anti-seizure meds seem to be working…

It’s strange that I can remember the exact dates of my two generalized tonic-clonic (grand mal) seizures: 9/30/91 and 1/2/02. Beyond those, I’m lucky if I can pin them down to a specific month. Except for this one, of course. April 16th was a special date, primarily because Minnesota suspends your driver’s license for six months after an involuntary loss of consciousness. If my last seizure had happened after April 19th, that six months could have carried over past my 26th birthday and I would have had to retake my driver’s test. At age 26.

So when the necessary time had passed and it was a few days before my birthday, we were scurrying around to fill out paperwork so I could get my license back without sitting in a room full of teenagers for an entire day, facing a constant battle of wanting to bash my head against a table, hopefully leading to a voluntary loss of consciousness.

I don’t think I’ve written about my seizure in ’02 before, so I’ll try to give you all an abridged version of the story. Keep in mind that some of this is a little fuzzy, especially the order in which stuff happened, but 1 1/2 weeks in the hospital tends to blend things together a bit. Continue reading “Ten seizure-free years and counting…”

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