Category: Epilepsy

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Epilepsy Awareness Month, Day 1

Given my penchant for storytelling, we’re starting this month off with a story from last summer. I was working a shift at the Minnesota Epilepsy Foundation’s State Fair booth and they had a game of Plinko set up: drop a disk into a slot, watch it bounce off a bunch of posts on the way down until it eventually lands in one of four spots at the bottom. If you’ve ever seen The Price Is Right, you should know exactly what I’m talking about.

But in this case, people didn’t win any money. Each of those four spots indicated a question that we would ask the person (they were either multiple choice with three choices or true/false, so your odds of answering correctly were pretty decent whether you knew anything about epilepsy or not). The question that made me a little uncomfortable was talking about calling an ambulance if a person has a seizure that lasts for longer than four minutes. Why? Because it reinforces the idea some people might have that there’s only one type of seizure. It’s sometimes called a grand mal seizure, a generalized tonic-clonic seizure or the kind of seizure that makes you fall down, go boom and start knocking lamps off of tables.

I don’t know what they did this year, but I suggested that they change that particular question to a multiple choice question: How many different kinds of epileptic seizures are there?

A) 4
B) 10
C) More than 40

If you guessed C, you would have been right and won yourself a nifty new Minnesota Epilepsy Foundation pencil! I speak from personal experience when I say that there are a lot of different seizures that people with epilepsy can have. If this is new information for you, then as the month goes along, perhaps you’ll learn about a few more that don’t involve damaging lamps.

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Epilepsy Awareness Month, Day 30: The End… until tomorrow.

“It’s November 30th already? Okay, time to wrap it up, no more seizures for the next 11 months!”

This is the last day of Epilepsy Awareness Month, but that doesn’t mean the end of epilepsy. You won’t get the same ads and billboards and Facebook posts reminding you about epilepsy, but even though it’s not in your face anymore, it’s still here.

African Americans have accomplished a lot of things outside of Black History Month. People are frequently thankful when it’s not November 25th. Christmas… is a monster that’ll eventually consume the entire year if it isn’t stopped.

But my point is that the calendar shouldn’t dictate our behavior, you know? Yay for black people making history during the summer! Yay for being thankful during the summer! Yay for Christmas… No! Not okay! The song is called 12 DAYS of Christmas, not MONTHS! Go back to December where you belong!

…

Ahem.

As I was saying, the calendar shouldn’t dictate our behavior. Awareness, understanding and acceptance of epilepsy shouldn’t stop when Awareness Month is over.

If you feel the desire to help, there are plenty of ways to support people with epilepsy. It doesn’t have to involve advocacy at the capitol or donating your life savings. You can talk to people, listen to their stories, lend them a hand… hell, even remembering not to stuff your wallet in someone’s mouth when they’re having a grand mal seizure is a step in the right direction.

I’m aware of it every day. It’s part of me and we have a constantly evolving relationship. (I just started a new medication today, so three cheers for the next stage of evolution!) For everyone else… who knows? Maybe they’ll think about epilepsy over the next 11 months, maybe they won’t, but either way, it’s here. It’s here today, it’ll be here tomorrow and the next day and the next day and even on Christmas, too. Especially if the holiday eventually reaches its peak and then every day will be Christmas!

Welcome to Christmas Awareness Month, Day 30: The End… until tomorrow.

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Epilepsy Awareness Monday, Day 29: If it ain’t broke, you can’t fit it.

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

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

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

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

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

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

… meow?

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

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

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Epilepsy Awareness Month, Day 22: Gratitude Edition

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

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

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

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

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

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

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

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Epilepsy Awareness Month, Day 16: What’s wrong with New Jersey?!

I see an ad on Facebook occasionally from the Epilepsy Foundation of Minnesota and onein26.org. A few days ago, someone left a comment there lamenting the fact that if someone has cancer, heart problems or diabetes, people want to help out. When they hear “epilepsy” or “seizures”, it’s “RUN FOR THE HILLS!” (Okay, maybe not that bad, but it’s certainly not the same level of empathy.)

I can understand why, really. Epilepsy and seizures are kinda scary. You can be having a conversation with someone, then suddenly, they collapse onto the floor, flopping around like a fish and knocking lamps off the tables. And a lot of times, that’s the only thing they know when they hear “seizure”. Not many people realize that there are over forty kinds of seizures and they only know about one of ’em.

What’s more, there’s nothing concrete about it. You can’t just point your finger at something and say, “That’s epilepsy, here’s how to fix it.” If someone has cancer, “There’s the tumor, time for chemo and radiation.” Heart disease? “There’s the blockage, time for bypass surgery.” Diabetes? “Good God, man, start drinking coffee with your sugar!” And then there’s epilepsy.

About 60% of the time, doctors can’t find a cause. It just happens. Everything is fine, then you have a seizure. And more than half the time, you also have a lot of unanswerable questions. I’ve had a handful of MRIs done on my head and my brain looks quite healthy, thank you very much. We don’t know why my left temporal lobe sometimes acts like an 8-year-old after stealing his father’s coffee mug filled with sugar, but it does.

Look at it this way: with all of the gajillions of neurons in the brain, it’s like a network of all of the computers in the United States. Everything runs smoothly, all of the computers function as a single unit to perform all of the necessary functions and it doesn’t matter that 2/3 of them are constantly surfing for porn on the Internet.

And then one day, when everything is running smoothly, there’s one bad batch of code in New Jersey. Just a few ones and zeros in the wrong order and there’s an instant chain reaction that shoots through the entire network and all of those smoothly-running computers are now stuck on the blue screen of death for thirty seconds. And then it stops, the computers all reboot and everything is running smoothly again.

Obviously, this isn’t how all seizures happen or how much of the brain they affect. Sometimes it’s a nation-wide disaster scenario. Sometimes it makes the monitor screens in a small neighborhood flutter for a few seconds. Sometimes it’s a massive blackout across the entire state of New Jersey. All because of one bad batch of code that repeats itself from time to time… but no one knows when it’ll happen or how often.

How do you treat epilepsy? It might go away on its own, but a lot of people take medication. Types and quantities vary, side effects vary and success rates vary as well. I think I’ve been on… eight different meds at different times. There were two that kept me seizure-free for almost fifteen years, but since then? Time to get out the dartboard, throw a dart and see which medication I start next!

Or some people have brain surgery. If you think open heart surgery or removing tumors is scary, imagine extracting the entire state of New Jersey from your head. How does that affect someone’s personality? Aside from the existential question of “Am I still me if I have part of my mental capacity removed?”, you just lost a big chunk of the eastern coastline. (For the record, I know several people who’ve had brain surgery and they’re doing just fine. No mental or emotional scars, just the physical ones on their head from the incision.)

So there are a lot of unknowns about epilepsy. Who, what, where, when, how and why? We know the who and the what: one in 26 have epilepsy. There’s usually no where or when until after a seizure happens; how they happen or why? Not many answers there, either. And without answers, people think it’s scarier than things that kill a lot more people. Things like cancer, heart disease and diabetes.

But it doesn’t have to be scary. More research is constantly being done for different kinds of treatment: different medications, different surgeries, different implants (you may be able to keep New Jersey on your neural map). They can limit or prevent seizures altogether. They can help people function on a daily basis. They can allow those of us with epilepsy to live relatively normal lives. That’s the hope, anyway.

And I think that’s the point of Epilepsy Awareness Month. Talking about it, learning about it, realizing that it’s not as scary as you might think. Sure, sometimes people with epilepsy break lamps, but I was in a play when it happened. I was supposed to bump it with my arm when I ran past, then grab it before it fell… oops. (Thankfully, we had a backup lamp for the remainder of the shows.) So there can be lamp casualties, but that doesn’t change the fact that we’re not that scary.

We’re one in 26. We have epilepsy. And we’re pretty awesome people, too.

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Epilepsy Awareness Month, Day 11: Par for the course

I had originally written the title as “Just another day”, but I think it’s important to acknowledge that epilepsy awareness is pretty dang significant. It’s like Veterans’ Day or Black History Month or any unit of time that deserves a title with capital letters. People who have epilepsy shouldn’t be marginalized or forgotten or ignored. We’re special… maybe not in a good way, but still special.

I thought about “just another day” because it’s also a way of life for us, something that we deal with every day. Something that I deal with every day. And twice a day when I take my medications, too. (I’d say “morning” and “night”, but as long as I take them at least six hours apart, I’m happy. And for the record, a lot of people don’t have that luxury.)

It just seemed to resonate today because I’m having flashbacks to about 18 years ago. That was a time when my seizures were uncontrolled. Infrequent, but still uncontrolled. Every once in a while, I’d have a blackout. No triggers that caused them, no sensation that it was about to happen. I’d just walk into the kitchen and then I was walking out with a plate of eggs and toast for breakfast. Or watch a Vikings game and then it was ten minutes further into the game and the scoreless tie was 7-0. Or I’d be doing something unimportant and then I was in the middle of a conversation with my mother and only stopped talking because I couldn’t remember the word “chart”. I could think of the lines going up and down and side to side, but not the word. And that was par for the course. I got used to them.

But it’s not like we sat back and let it happen. I was “medication hopping” for a while. We tried a variety of different combinations and doses of medications back around 2000-01. I don’t remember all of them, though I recall taking Trileptal and the doc eventually increased it to a toxic dosage. He thought it would be okay because “I was a big guy”, but the seizures kept happening. So we tried another. And another.

Thankfully, after a stay in the epilepsy ward of United Hospital, the doctors found the right combination. (They glued a bunch of electrodes to my head to find where the excess electrical activity was, then picked medications to address that.) And for fifteen years, that became par for the course.

And then it wasn’t anymore. My body started getting acclimated to those medications and I had to try something else. And I was scared. There was some combination in the early 2000s that really messed with my head. My long-term memory suffered. A lot. And so I was scared. I was about to try a new kind of medication and I didn’t know what that would do to me. Would I forget more things from my past? Would my behavior change? Would I still be… me? Thankfully, Teresa was there to comfort me that night because I did a lot of crying. Because I was scared.

I’m not scared now. I’ve done some more medication hopping since last year, but to no avail. Well, not complete avail. Certainly not “fifteen years with no seizures” avail. But really, not even “I can tolerate this level of seizures in the long term” avail. I’ve got an appointment scheduled with my doctor at Minnesota Epilepsy Group at the end of the month and we’ll talk about a different type of treatment. Maybe a different dosage of what I’m taking, but probably a different medication altogether. And I’m not crying this time. I didn’t any of the other times we’ve made medication changes since last year, either. Because I’m still me, I’m still functional and I’m still able to talk about having epilepsy and seizures. I was afraid of starting medication hopping all over again, but now? Now it’s par for the course.