In honor of Epilepsy Awareness Day on March 26 (tomorrow!) I created this post to highlight this condition. As many of you know, the posts I create can be about anything; networking advice, embarrassing stories, psychology topics, and accidentally launching black bean burger patties off a 6th floor balcony and almost hitting an old lady…I’ll stop at that. When it comes to health and awareness related posts I’ve written the past five years, it has been about Functional Neurological Disorder (FND). Well, the joke is on all of us, as the ONE thing I was told I for sure didn’t have all my life even after staying in the Epilepsy unit at Mayo Clinic is the ONE diagnosis that has been correct all along: Frontal Lobe Epilepsy. Don’t get me wrong, I am proud of the awareness I’ve created over the years for FND because it barely got any attention as is. But now, I am shifting gears in many ways; one being shifting awareness colors from orange and blue, to purple for Epilepsy. I’m also shifting to the mindset that I have a way to manage this now, therefore, have to keep up with my medications daily. I also have a concrete diagnosis I can finally tell people, and the fact I have been misdiagnosed for 14 years. Being misdiagnosed has left me with a lot of learning and catching up to do, including debunking the myths that even I believed about Epilepsy and disabilities in general. So now, it’s time to start creating awareness and learn about what the end of my long winded story looks like. I’ve prayed so long for an answer, and now that I finally have it, I don’t know how I feel. I’m not sure if I am happy yet, but the relief of having a name to the monster that has been moving me all these years is an odd feeling of freedom. Of course, I still have to deal with challenges, and maybe some more due to the potential stigma Epilepsy carries, so with that, here’s some common myths about Epilepsy. And, stay tuned for an announcement at the end!
Myth 1. Epilepsy is caused by looking at strobe lights
Let me set this straight right off the bat. A cause, and a trigger, are two important/very different words when it comes to Epilepsy. Yes, strobe lights are a trigger for some, but not a cause. And even so, strobe lights are not a trigger for all. I passed the strobe light test unfazed and with flying colors (no pun intended…maybe). My triggers have nothing to do with lights, but everything to do with stress, lack of sleep, sickness, and not getting exercise. The strobe light and Epilepsy connection is a stereotype that we see in the movies all the time. It is a stereotype just like blondes are thought to be dumb, tall people should play basketball, Kentuckians eat a lot of KFC (I can tell you first hand this is not true), etc. The word Epilepsy in itself carries a stereotype. When I mentioned my diagnosis above in my intro, what did your mind picture? Perhaps excessive shaking? Foaming mouth? Unconsciousness? It’s okay, a lot of people’s minds jump to that. But how about we just go ahead and start fresh; forget the fact that all Epilepsy is caused by the music video ‘All of the Lights” by Kanye (all y’all my age will know exactly what I am referring to).
Myth 2. There is one type of Epilepsy, and having a seizure means someone has Epilepsy
Fun fact: there are four types of Epilepsy, and each type includes different kinds of seizures. Wasn’t that fun? For Epilepsy to be considered Epilepsy, the electrical activity has to look a certain way in a pattern in the brain over and over- not just having a seizure. When people think of Epilepsy, most think of the seizures they see in Gray’s Anatomy where people are being rolled in on stretchers shaking uncontrollably. While some seizures do look like this, there are actually 40+ kinds of seizures, not just one. Don’t get seizures mixed up with Epilepsy. The kind of Epilepsy I have is Focal Onset Epilepsy of the Frontal Lobe. This is fancy talk for “it starts in one side of my brain in the frontal lobe, but can spread to both sides of the brain.” It was found after a 24 hour EEG where, thankfully, both kinds of my seizures were captured and all the pieces were finally put together. The rareness of both of these seizures happening in one night is incredible since I can’t manifest them to happen. It was worth looking like I was wearing a fruit bowl on my head. Again, there are so many stereotypes around seizures, and that every seizure looks the same. The four kinds of Epilepsy are as follows: Focal Epilepsy, Generalized Epilepsy, Combined Generalized & Focal Epilepsy, and Unknown. It can get pretty confusing even trying to wrap my head around the fact that I have one kind of Epilepsy, but I have two kinds of seizures: focal seizures (fully conscious and only on one side of my body), and Grand Mal seizures (unconscious, and the kind you see in Gray’s Anatomy). That last part may not be helping my point I am trying to make that not all seizures are Grand Mal even though they are the most common in adults, but bottom line, seizures are not always Epileptic activity, and Epilepsy contains many kinds of seizures!
Myth 3. People with Epilepsy are disabled
On paper, yes it is a disability, but let me remind you that before I found out I had Epilepsy for over a decade, the literal day before that, it was believed I did not have a disability all this time, therefore, carried no potential stigma. Before I found out about this diagnosis I’ve also held a full time job since graduation and am in a program created for the top 5% of consultants at my company. I thrived in college by being president of the psychology honor society, I’m in the Phi Beta Kappa Honor Society, Order of Omega Honor Society, held internships in the summers, was on the Varsity Gymnastics Team in college, and a lot of other things that I honestly don’t remember what those cords are for anymore. In high school I was in the National Honor Society, and served as Captain of the gymnastics team for two years. I also did competitive club/high school gymnastics for more than half my life which included flips on beams/swinging on bars 9 feet off the ground/hurling myself in the air off stationary objects; all while not having any treatment because I truly had no clue I had this condition. So I don’t know about you, but I am just one great example of how not all Epileptics are physically or mentally disabled. This wasn’t meant as a brag fest, I just wanted to bring attention to the fact that abilities are definitely not dampened with Epilepsy without treatment. Fun fact: Prince, Elton John, Neil Young and Lil Wayne are just a few celebrities with Epilepsy (that fact may have been a little more fun than the other one).
I want to pause and recognize that this is not the case for everyone and their families. I am truly blessed that I don’t have the kind of Epilepsy that leaves me in a spot where I didn’t have the ability to achieve what I have. But I also know that those who are disabled with this condition can often be the face of Epilepsy, and those who are uneducated about it put everyone in the same boat when really, we should be in many different kinds of boats (can I be on a pontoon at sunset, please?). Epilepsy may be called a disability, but it doesn’t play out like one for a lot of people, including me. Sure, my road to where I have gotten now hasn’t been easy and hasn’t been traditional in some cases, but as I’ve said in past posts, I can do what everyone else can, it may just take me a different route to get there. If anything, the minor inconveniences that I have run into regarding my health have revealed a lot of true colors in people and situations. So the next time you hear someone has Epilepsy, don’t be quick to form a picture in your head, because the picture I form in my head post diagnosis is still one of me flipping on a four inch piece of wood the width of your phone (I know you just looked at it now), being a high performer at work, trying to be a good fiance by cooking but butchering the whole thing in the process…and that’s not going to change now that I have a diagnosis. Although, I wish the fact that I now have a diagnosis could change my cooking skills.
Myth 4. Epilepsy can’t be managed once you have it
This was one of the myths that I believed until I learned otherwise. The sad part is that I had to learn it by being diagnosed myself. This is why I speak up about things when I could be silent, because I strive for others to know about Epilepsy just how people know to take Ibuprofen for a headache, an antihistamine for allergies, or a laxative for constipation…yeah that’s right, let’s get comfortable talking about the uncomfortable! If anything, compared to talking about constipation, Epilepsy isn’t the uncomfortable subject here..I digress. First, Epilepsy cannot be cured (yet), but it certainly can be managed! Just like everyone has to manage their health/weight the rest of their lives otherwise they don’t feel great, this is kind of what it is like to have Epilepsy. It is an ongoing effort, but is ok if managed correctly. Thankfully I have been put on some medications that have helped with the seizures which has allowed me to sleep like “a normal person” after 14 years of being scared to sleep at night and doing everything in my power to stay awake all night out of fear. Sure, the side effects aren’t great at the moment, and until I find the right levels for my body I am currently wondering if there were sloth genes in the Casey family tree at some point. I’m also praying that my skin will stop looking like the sunburnt version of Uncle Fester, but once that is all figured out, I will forget that I even have Epilepsy (just like if you manage your health and eat enough fiber, you won’t need any laxatives and forget about intestinal discomfort!) I couldn’t end this paragraph without circling back to that, you all should know me by now.
Myth 5. Those who have Epilepsy should keep it to themselves for protection
Epilepsy is a hidden disability a lot of the times- mine primarily happens while I sleep at night unless I run into one of my triggers during the day, or don’t do my practices to manage it. This gives me the ability to hide it easily, which I did for years out of embarrassment that I couldn’t control my body, not out of the chance that others would potentially treat me differently. The thought of being treated differently never crossed my mind, and honestly, never has. To me I’m just Lauren, and maybe that is naive to say, but I will always be “just Lauren,” because I know what I bring to the table outweighs all this. While some believe that the need to keep something like this hidden is true, I fully believe there is no reason to keep it hidden. The word disability comes with a lot of stigma, and it is true that some types of Epilepsy require tapping into disability advantages. I bet you some people don’t take advantage of those and suffer because they don’t want anyone to find out. But as we learned there are some types, like mine, that should more be classified as adversity, or more like an annoyance to be completely honest. Why can’t those be categories? And who hasn’t experienced adversity or annoyances in their lives? As I’ve said in previous FND posts, the adversity I have endured is what has made me into the resilient, strong, faithful, and persistent employee/consultant/significant other/athlete that I am. I’ve had some clients tell me (pre Epilepsy) that I should look into accommodations, needed a doctor’s notes as proof, or to take Long Term Disability when that would not help me at all. I just need understanding that not every day is always the same for me, but that doesn’t change my work ethic or quality! This is why I don’t hide what has made me who I am regardless of the risk I know I run due to other people’s unconscious or conscious biases. I don’t identify as disabled even though I now have to check a little box on a piece of paper that tells me I am. It bugs me that so many people let the fact that a little spot of ink in a box dictate what they think about a person, a candidate, their brain or body, etc, without even meeting them. So with that, I will not keep my invisible disability, invisible. Epilepsy will not be cured or known if its name is not said out loud, or if no one normalizes that it doesn’t aways change people’s abilities! Maybe it will affect how others view me now, maybe it won’t, but if it does, why would I want to work for them? Be friends with them? Epilepsy/all the other diagnoses I had before have been quite the weed whacker all these years in the best way possible. I was not silent when I didn’t have a disability, and I will not be silent now that I do. If only I could transfer the weed whacking capabilities to my front yard.
Myth 6. Epilepsy medications are dangerous
So maybe they do make me look a version of Uncle Fester at the moment that causes everyone at the gym look at me weird…but that’s just temporary…I hope. Epilepsy medications have come a long way. I actually was put on the same medication in 5th grade when the doctor suspected I may be having focal seizures the first night I ever had a “spell” as I used to call them. (That’s the picture on the right if you didn’t figure that out yet…I have aged a bit since then). If only the rest of the doctors trusted their gut, it would have saved me all this time (but hey, I wouldn’t have all this great material to write a book about how an alpaca farm changed my life). When I was told I was going back on the same medication, I was terrified I would turn into the shell of myself that I was back in 5th grade. I immediately had a lump in my throat as I started to have flashbacks of my dad pulling me aside during practice to administer the nasty liquid medicine that I utilized Kix cereal as a chaser for the taste, and remembered it made me super tired and weak. I’ve realized that medications truly do improve, and Epilepsy research has come a long way. While it still has a ways to go considering it took them so long to find mine (deep in the brain = hard to uncover). My liver appreciates the progress of going through the kidneys now!
Myth 7. Those with Epilepsy can’t live a full life
This one just irks me whenever this stigma comes up, or I see posts about Epilepsy being such an intrusion. As the great Hannah Montana once said: “life is what you make it, so let’s make it rock.” The fact that I now have a label to all this madness isn’t about to change anything about me or my future. For example, I could take the label off a container of M&Ms or *insert your favorite sweet of choice,* and that would not change the taste of them at all. As mentioned before, I am just one form of proof that Epilepsy doesn’t have to impose on dreams, goals, abilities, love life, sports, etc. I didn’t just wake up the day after being diagnosed and no longer was able to do a cartwheel, couldn’t pull Tableau reports, or change the fact I’m getting married soon. A lot of people let labels get to their heads, and that is what self sabotages their mindset. When one starts to let their condition control them and the beliefs about themselves, that is when it consumes them mentally and physically, and that’s when it is easy to feel down. Of course I have my down days, but that’s when I stop and remember all I have done, who I am, and all the little things I am grateful for. I for one, will not let a label tell me what I can or can’t do. I mean look at boxes of Girl Scout cookies. They have labels, and Samoas and Tagalongs (no, no, it is not Caramel deLites or Peanut Butter Patties) are some of the best labeled cookies I know – sorry Thin Mint people.
Myth 8. All Epilepsy is caused by structural issues in the brain
Due to the number of MRIs I have gotten in the past looking for issues, and always passing the “no structural damage test”- this said myth is not the case. My Epilepsy most likely stems from the tick that bit me when I was six, and the unknown infection that had a grand old time running around my brain like it was the playground in McDonalds unsupervised. In case you all thought I’d go a whole post without addressing the whole “I found out after visiting an alpaca farm that I’ve had Lyme Disease for 16 years” thing, you thought wrong. Yes, this is all most likely still Lyme related, which gives me even more reason to tell everyone to watch for ticks whenever they mention forests, camping, long grass, or really just going outside. But Epilepsy can stem from much more than structural problems and stupid tick bites, in fact, sometimes the cause of Epilepsy can be fully unknown. While the underlying cause can be fixed sometimes, unfortunately, once the Epilepsy “light switch” has been turned on, it can’t be turned off again.
Myth 9. Epilepsy damages the brain the longer you have it
I’ve heard a few times, and thought myself, that Epilepsy will eventually cause damage to the brain. You’d think that as a Psychology Graduate I’d learn SOMETHING about Epilepsy throughout the four years I studied the brain, but nope! The part that has some truth to that is if Grand Mal seizures are not managed, they can be hard on the brain, but as I have myth-busted, there is a way to manage seizures to prevent that. The last MRI I had was last February after having a Grand Mal seizure, and guess how it came back? Perfectly fine- no damage or sign of a seizure. I will admit, I still have a lot to learn about Epilepsy, and maybe the small number of Grand Mal seizures that I have had in my life compared to some people doesn’t reveal the significant damage they can cause to the brain. I started having Grand Mal seizures after my Lyme Disease came out of its dormant state in 2020 post alpaca farm (PAF), and have had probably around a dozen in my lifetime. I won’t say much more on this topic because I still am so premature in my knowledge, and just goes to show that the public, and even someone with neurological issues for more than half my life doesn’t even know much about this condition!
Myth 10. Seizure protocol
Look, I know that people have the best intentions with this, but there is just some information out there that is flat out wrong. First, do not put anything in their mouth to prevent tongue biting. You go try and put something in your mouth right now and try to breathe or swallow. It is like trying to swallow at the dentist when they have their hands in your mouth, aka, it’s not that easy while conscious, so why would an unconscious person want that? Also, not all people go unconscious while having a seizure. Since most of my seizures are focal and I stay conscious, please, don’t stuff one of my good dish towels with the cute dog pattern in my mouth when I am still fully conscious. The only part that changes about me is the fact that my left side now looks like one of those blow up people that flail around at car dealerships. Second, don’t restrain the person. This can make it worse, and stress the person, brain, and nervous system even more. A seizure is actually a very “put together” process and the brain and nervous system know what they are doing to protect the brain as weird as it sounds. Lastly, I know I have been talking about myths this whole time, but I want to address a common protocol that is not wrong– turning someone on their side! The reason for this is because sometimes seizures can cause the person to vomit. Truthfully, this has happened to me while alone, and I did not have someone there to turn me. It was probably one of the scariest moments of my life to become conscious again struggling to breathe. Becoming conscious again and waking up are a whole different scary ballgame. I also was not able to use my limbs to grab my phone and call for help, speak, or move myself because after a Grand Mal seizure, it can take a few minutes for the brain and body to communicate with each other again. If I didn’t “come to” when I did, it would have been a lot worse. Did I need to include this graphic scene? No, but it just emphasized that this can happen to anyone, and knowing seizure protocol can save someone’s life. Well, that got heavy, so let’s end this point with a joke shall we? What do computers do to de-stress after work? They go to the bar and take screen shots…cheesy right? Alright, hopefully that lightened the mood a bit.
Well folks, this is my first Epilepsy Awareness Day while knowing I have Epilepsy, and I hope next year I am able to share even more information with you…(and hopefully am not sharing a new diagnosis). I finally believe that this truly is the end of my story, one that I know a lot of you have been invested in, too. I simply cannot thank you enough for all the support and encouragement that I have received all these years. It means more to me than you know and has kept me fired up to keep going and to trust there was an end. Lastly, my love for lighting up bridges has not ended, it has just spread! Check out the Lowry Avenue Bridge glowing purple TOMORROW, and the St. Anthony Bridge lit up purple MONDAY (3/27) for Epilepsy!