I am 1 in 26

Did you know that 1 in 26 people will develop Epilepsy in their lifetime?  Did you also know that I am one of those 26?  If you just look at Epilepsy by the numbers you will find that the number of people affected by Epilepsy is more than Multiple Sclerosis, Cerebral Palsy, Muscular Dystrophy and Parkinson’s combined.  You will also learn that the risk of sudden death is 24 times greater than that of the general population.  You might be shocked when you hear that in the United States, people with epilepsy were forbidden to marry in 17 states, until 1956. The last state to repeal this law did so only in 1980.  Your eyes are not playing tricks on you, I said 1980 not 1908!  Even crazier still, in 1956, 18 states provided for the sterilization, on eugenic grounds, of people with epilepsy. (Insert shocked face bug-eyed emoji here). 

I read somewhere that people are more taken by the plight of one child’s struggle versus the collective news of 5,000 children struggling.  I have no idea if that’s even true and while I’m certainly not a child anymore, I was when I was diagnosed with Epilepsy and figured I would share my story today on Epilepsy Awareness Day.  The word epilepsy is derived from the Latin epilepsia, which means “to take hold of”  and that is exactly what it did, it took a hold of my life.

I had been a pretty typical kid up until I was 12 years old.  Sure I was a klutz and had broken a few bones and had been in the hospital to have my tonsils out, but besides that I was healthy.  I was in the “smart kid” classes, spent my afternoons and Saturdays in dance classes and for the most part, had a bunch of great friends that I loved hanging out with.  It was in one of those Saturday morning dance classes that my whole life changed.  I remember being early and being the only one in the studio for a few minutes, but what I don’t remember is having a grand mal seizure in the studio. I don’t remember waking up in tears or even the ride to the hospital in the ambulance.  At the hospital later that day when I as more “with it”, my parents would explain to me what was told to them what had happened. So in reality, none of us knew what the heck had happened.   As they proceeded to tell me all of it, each detail shared made me feel more grotesque than the last.  Foaming at the mouth, turning blue and whaaaat… wetting myself.  While we were all a little scared, the doctors reassured my parents that sometimes girls going through puberty would have seizures or that one seizure did not mean I had epilepsy and we would “just monitor it”.  We didn’t have to wait too long until it happened again, and again and again. 

I remember the day the doctors were finally ready to commit to the actual diagnosis.  If you’re picturing a scene from a movie where my parents and I are sitting across from the doctor waiting to hear a piece of my fate, so far you’ve got it right.  But what happened next felt more like I was there to open up a bank account and not learn how so many parts of my “plan”  (Yes I had a plan at 12) would have to be altered.   The doctor slid a few pamphlets into my hand and basically said we’ll see you at her next blood test or EEG or MRI.  Clearly, this guy slept through Bed Side Manner 101 in med school. As we drove home, I pored through those pamphlets in the backseat, hoping I wasn’t going to be one of those terrifying statistics.  At the time, there was even less research available than there is now and reading about rates for graduating from college and people with epilepsy made my heart sink. 

My dreams of college weren’t the only thing that felt as if they were slowly starting to disappear, so were all those great friendships I had.  I can’t tell you for sure if it was them who got sick of having to be my shadow or if it was I who no longer felt anything like the girl I was even just a few months before. I had no clue how to keep hold of that Caitlin and this new version I had believed myself to have become.  I figured it was easier to not be a part of things. If I wasn’t there, then no one could call me any of the names, I was calling myself in my head.  In an attempt to do the right thing, my school made another student always be with me in case I were to have a seizure. That meant even coming to the bathroom with me. That shit’s embarrassing and weird for everyone involved (pun totally intended).  It wouldn’t be until later in life, that I’d see that this was a common phenomenon between female friends.  You purposely went to the bathroom together.  But in junior high, like when ACTUALLY had to go the bathroom and not just reapply your bonnie bell lip-gloss or talk about your crush in semi-private, it sucked.  As I just mentioned, I don’t know if it was them or if it was me, but the end result was still the same.  I felt like I just didn’t belong anymore.  I mean who’s going to be inviting me over for a sleepover if they happened to hear that at the last sleepover I went to, the Fire Department had to be called and take my friend’s bathroom door off its hinges because I was lying unconscious and limp across the door after coming out of the shower and having a seizure.  Can you imagine how scared that mom must have been to hear me thrashing around in there and not being able to get to me?  I do remember that mom, bless her heart, for her valiant attempts to cover up my naked 13-year-old body as the paramedics were trying to get me out of the house and into the ambulance.  At least someone was concerned with my dignity. Through junior high, I still felt like I had a handle on trying to pretend that there was nothing wrong with me, but in High School, I just kept getting sicker and I didn’t have the energy to pretend.   I totally had friends and was still well liked, I just didn’t feel as connected to anyone or even myself at that point. I watched as my friend’s counted down to when they would get their license. I mean I was counting too, but it wasn’t quite the same. I was counting up. Hoping that I would soon get to 365 days since my last seizure and like my friends get to get my license. When people talk about how they “looooved High School.” , I just look at them like they’re from Mars. I was definitely not a fan.

The hardest part to remember about my journey with epilepsy was that for me, there were never any answers. Why am I like this? Why can’t they figure out how to stop them for good? Is today going to be the day, I embarrass myself again in front of my classmates? Would I ever be normal again? As an adult, I can whole-heartedly say that “normal” is overrated, but it meant a lot to me back then. And it wasn’t just me who struggled to understand.  It was also my parents.  I was old enough to know that when your child has a problem, as a parent you tried to do everything in your power to fix it.  But this was not something they could fix and watching them struggle made me feel even worse.   I imagine on the best of days it is scary as heck to raise a teenage daughter.  When one of your only worries should be “Gee, that Bel Biv Devoe song is awfully risqué I wonder if she knows what it means?” For the record, I did not, but do now and would concur a bit risqué for my naïve mind at the time.  So when you added in my Epilepsy, it felt as if every moment was scary and we always had to be careful… Are you sleeping enough? I don’t know Ma, ask my math teacher, I think I fell asleep in his class three times last week. Remember the doctors said, no video games. Aww, but the Legends of Zelda Mom! Did you forget to take your medicine? Probably, it makes me feel like crap. You’re not going alone, are you? UGH, No, jeez Ma!  You just can’t play that sport right now, it’s not safe.” So what, am I just supposed to sit by and watch?”, “Why aren’t you wearing your medic alert bracelet? It lets everyone know what’s wrong with you? We even bought you that fancy one that looks just like a nice bracelet.” Right, why don’t you get me the t-shirt that says, I’m a freak too?  Looking back, I am not sure if my snarkiness was a direct correlation with my epilepsy or if that was always there, but let me say for the record, Mom, I am sorry because I know you took the brunt of it.

I’d love to tell you that when I got to college (Kiss my grits statistics), the seizures stopped and I went on to just be like everyone else.   Well, that wasn’t quite the story. I went to classes, ate way too much soft serve at the dining hall, missed a few Friday morning classes and not so secretly wished some boy on the hockey team would be my boyfriend, which if you think about it was probably just like a lot of people. But, I continued to have seizures that resulted in breaking bones, chipping teeth and needing stitches.  It got to a point where if I missed Dawson’s Creek or a 90210 night with the girls, they would check hospitals for me first.  I mean why else would a girl miss finding out if Joey was going to pick Pacey or Dawson?  My friends and cousin would take turns holding my hand as they stitched me back up and once they even brought a birthday cake to the ER.  It wasn’t my birthday but it was someone else’s and they knew that it would usually take a while for me to be discharged so why not have cake.  One time my cousin brought what felt like half the UNH hockey team with him to pick me up.  At first I was mortified, but one of the players was coincidentally also sporting a newly broken nose and commiserated with me.  I wish I could find the picture I have of the two of us, each with our respective noses just a little out of joint.  His earned by some fisticuffs in a game, mine earned from my nose unexpectedly meeting the floor of my classroom.  You see you don’t remember to use your hands to break your fall when having a grand mal seizure…go figure.

    In spite of all these memories,  I know that I am lucky.  Not only did I have an amazing support system in my family and friends, but my seizures were mostly controlled by medication.  Unfortunately, one-third of children and adults living with epilepsy today do not have their seizures under control and no medicine will fix it.  Some children have to eat high-fat diets only to hope that their bodies will go into ketosis and help lessen their seizures.  For all you folks thinking you’re doing something new and hip with that Keto diet, it’s all been done before. Some people living with epilepsy will find themselves faced with a decision of whether or not to remove a portion of their brain to stop the seizures. I am grateful that I can share my story and grateful that my struggle with it, led me to where I am in life today.  Did I hate that time? 100 percent yes.  Did I spend a lot of my late teens, 20’s and maybe even early 30’s feeling like I was ugly and broken? Unfortunately, the answer is also yes.  Did toxic yet effective seizure medications cause damage to my insides that are beyond repair? Again, the answer is yes.  But I think the more important question is did I make it out ok? I think so and maybe even better than just ok.  Did I find a place to use my experiences for the better? Absolutely.  Sometimes in parent meetings where information about seizures or seizure medication is shared, I often struggle between being professional and not making the meeting about myself and just telling them a bit of my story so that they, like my parents keep pushing for their kids to have all they need to be the best version of themselves 20 years from now.  I worry sometimes if my boss will later tell me, it wasn’t right for me to share, but I’m also reminded of a time a parent contacted me after a meeting that I did share at to tell me how much hope I had given her.  I am fully aware that everyone’s journey with epilepsy is different, but who couldn’t use a little hope every now and then.

I don’t tell my story for people to feel bad for me or take pity on me, I tell it because everyone living with epilepsy has a story and we need more awareness, research and god willing, a cure so that when they are ready, someone else can tell theirs.  I bet it will be amazing!

PSA for friends/family of Epileptics

• If you think it’d be funny to call someone up who has epilepsy and ask them to grab you some milk for a milkshake…it’s not and that person might still be thinking about it 25 years later
• If you’re a running coach and want to emphasize a route that you do not want your runners to freak out over, maybe don’t say the words, “Don’t go have a seizure or anything.” I mean I’m no running coach, but I can think of a lot of cooler ways to say that.
• If you’re curious as to what a seizure looks like and you happened to learn that lights can activate a seizure, don’t flick the lights on and off in your classroom in hopes that the person in there with Epilepsy will give you a show.
• In other words…”Don’t be a jerk.”

XOXO, Caitlin

If I have piqued your interest and you want to learn even more, go to https://www.epilepsy.com/learn/about-epilepsy-basics/facts-about-seizures-and-epilepsy