First things first

If you didn’t already know that I have a seizure disorder, surprise! I’m not sure why, but this isn’t even something I mention in my About page.

It’s not necessarily something I am ashamed of or try to hide, but it’s also not a topic that I will bring up unprovoked. & that’s because typically when I tell others that I do have Epilepsy or that “I can’t partake, it might trigger an episode” it instills fear, or this idea that I am broken.

I am here to tell you that I am not broken, I am not incapable and Epilepsy should not call forth any fear. Rather, it should prompt awareness, education and understanding.

I’m here to do just that – give you insight on the taboo topic of seizure disorder(s), tell you my story & how you can help bring awareness to the incurable disorder that is Epilepsy.

Now, let’s rewind back to 2014

I rolled out of bed on Thanksgiving morning, probably hesitant to do so because I am not a morning person. It must’ve been cold, or maybe I was craving extra comfort, so I threw on some plaid pajama pants and a Guy Harvey hoodie. I am 99% sure that both of those clothing items belonged to my twin brother. Not sure how they came into my possession, but from here on out they belonged to only me & no one else.

The plan for the day was to go over to my grandma’s house. This was almost always the plan for holidays when I was a kid. No rebuttal on my part, she lived right next door – maybe the walking distance of an acre.

Because we weren’t going far, I procrastinated in my efforts to get ready. I tried to take it slow in the mornings, I even do to this day.

Just months prior to this day, I was experiencing what I classify as twitching and intense muscle spasms in my arms & legs. Mostly in my arms, and it was almost always in the morning when I was extra tired and groggy. I would force my body out of bed before my mind was ready. I noticed it happen a few times, and I ignored it.

Until one day, I was doing my hair and my arm twitched so aggressively that I held a hot flat iron to my face and I blacked out for a few seconds. When I came to, I had a burn mark on my face. A burn mark that can still be seen in the photo on my Florida ID. My parents took my concerns to our family physician, where they told us it was just a build up of lactic acid. They advised that I should drink more water and focus on letting my body rest.

This made sense. Outside of school, I was attending dance classes – lots of them. So I took their word for it, and did my best to relax and drink extra water.

But the morning of Thanksgiving was different. I felt funky, but chalked it up to sleeping in too late. While I was procrastinating, I heated up a slice of pizza and began to play on my phone. I scarfed down the pizza so fast as if I wasn’t about to eat an entire Thanksgiving meal plus dessert…

I migrated to the couch with my face still glued to my phone. I was playing Cooking Madness, and I was doing a damn good job. One thing about me – I’m going to play games on my phone and I’m going to take them way too seriously. My muscles started to twitch again and I didn’t think much of it. Probably just dehydrated.

Just relax, Cheyenne. I thought. And that’s exactly what I did. I was sitting on the couch still in my pajamas, playing my silly little game. My older sister was sitting on the back porch with my parents, but I could see only her through the glass door. They probably asked me to go outside and hangout with them but….Cooking Madness. Don’t they know I’m too busy being a master chef to hangout with them right now?? After a couple more levels.

And so I continued on, whipping up virtual burgers and milkshakes as customers arrived on my screen. As I sat there, I started to feel worse. My muscle spasms continued and at one point my arm twitched so aggressively that it flung my phone into my face. Weird, but not weird enough for me to stop playing on my phone.

Maybe the pizza made me sick, or maybe I need to down some more food… Maybe I’m getting too hot in all of these clothes, I am starting to sweat… I should change soon.

Before I could process another thought, my arms began twitching uncontrollably. So much so that it felt like gravity no longer existed as they locked up and carried themselves above my chest. I was looking at my phone as I lost control of my limbs and my vision started to fade. I couldn’t call for help, my eyes got spotty and within a couple of seconds – black. I felt nothing. Almost like I had just fallen asleep.

But I wasn’t sleeping. I was having a seizure.

As I slipped into what I thought was the most dramatic nap of my life, my sister saw me through the glass door. From what she told me, she thought I was crying and asked me what was wrong. From there, I don’t fully know what had transpired. My parents had come to the conclusion that I was choking on the pizza that I had not long before.

My dad shoved his fingers down my throat in an effort to dislodge what they thought was causing me harm – I clenched down on his fingers, hard. They had no reason to suspect that I was having a seizure, but I’m sure it didn’t take long to figure it out after my dad had to unclench the force of my jaw off of his hand.

Simultaneously, my Grammy had walked through the door and one of my siblings I believe was instructed to call 911. Luckily, we didn’t live far from the nearest fire station.

I came to, my family members and first responders standing over me.

A young man in uniform was speaking to me:

Cheyenne, hi can you answer some questions for me? Do you know what month it is?

I was looking around with foggy vision and responded:

June or July?

And do you know who the President is?

June or July?

Doing great Cheyenne, and do you know who this is?

He pointed to my Grammy. Of course I know who that is, are you kidding? When did she get here…

That’s Grammy

Suddenly, everything went black and again I felt that I had fallen asleep.

I came to and I was in an ambulance. A young woman was attaching wires to my body, and I began looking around.

Hi, Cheyenne. How are you feeling–

What happened?

Well, you weren’t feeling well and you had an accident so I’ll be hanging out with you while we take you to the hospit–

What, what happened?

Don’t worry, Dad is up front and Mom is in the car behind us. I’m placing these stickers on you to check your heart. How are you fee–

I lost consciousness again. When I woke up, I was still in the ambulance with the nice young lady sitting next to me.

What day is it??

Well honey, it’s November 27th. Today is Thanksgiving.

My eyes began to fill with tears and I screamed out in panic

I ruined Thanksgiving!!!!

Hey now, you didn’t ruin anything. Everyone is just happy that you’re okay.

She was so kind. I wish I could give her a hug and tell her how much she eased my mind. I blacked out again.

The next thing I remember, I was in a hospital bed and my siblings were taking turns visiting me from the waiting room, my parents steady by my bedside.

The rest of my ER visit is a blur, however I do remember the nurse asking me for a urine sample and I was panicking because I was on my period. & then I also remembered that I was wearing my brothers pajamas, not wearing a bra, and on my period all while having my body littered with stickers and cords by first responders. Ya know, the silly things you worry about at sixteen.

Normal for them, horrifically embarrassing for me.

After what I assume was the ER confirming that I had a seizure, I was sent home within hours. Just enough time to still make it to hangout with the remainder of the family over at my Grandma’s house to partake in Thanksgiving. However, I didn’t really partake. I slept. A lot.

I don’t remember much of that day, and not because it was traumatizing or too much time has passed, but my brain quite literally shut off. I was in a post-seizure daze all day, even the days following.

My Diagnosis

Following this experience, my mom had reached out again to my physician. I missed days and weeks of school, my brain felt fried. My physician almost immediately got me in for an MRI, and that same day got me into a really great pediatric neurologist – because let’s not forget, I was only 16.

After my MRI came back normal, our next step was to visit this neurologist and get not only her opinion, but also an EEG.

If you’ve never heard of or taken part in an EEG, consider yourself lucky. They quickly became my worse nightmare. My first EEG was the most out-of-body thing I have experienced to this day.

During the EEG, I had over 20 electrodes attached to my scalp with a thick vaseline-like paste. This was all in an attempt to see how my brain was reacting when being put though a multitude of different scenarios.

I was placed in a dark room and told to try to sleep. This was only after I was asked to mimic hyperventilation, which is done so by taking countless deep breaths very quickly, as if you’re trying to blow up 100 balloons.

While I was doing so, the room began to spin. Imagine it like this: lying on a bed, as flat and mummy-like as you can be. The room is dark, but you see the ceiling riddled with stars despite your eyes being shut. The stars begin to blur, and the bed you’re lying on becomes a spinning platter. Like the ones you see on dinner tables, but you’re lying right on top of it & the spinning is only getting faster.

“Keep taking those deep breaths, you’re doing great” the doctor said. The more I took, the faster I would spin. “98.. 99.. 100.. okay you can stop.” Thank god.

Relieved that I was done, I was taken aback to realize that nope. I wasn’t done.

A lamp swung around and was placed just inches in front of my nose. “Now close your eyes again. This time, this lamp will begin to flash, and the flashing will become quicker every few seconds. Let me know if you’re not feeling good and need me to stop.”

I’m sorry, is she joking? Is this some kind of neurological torture?

I closed my eyes, and the flashing began.

The spinning came back along with it, but this time it didn’t start out slow. As the flashing got quicker, the spinning of my body lying atop of the metaphorical platter tried to keep up.

The flashing of the lights became so quick it was hard to tell if it was actually flashing, or if it was just getting brighter and closer to the tip of my nose. The non-existent spinning got so bad I felt that I was about to be launched off of the table and I was going to pass out stop! now!!!!— “Cheyenne we’re done, how do you feel?”

Oh, like a million bucks. Thanks for asking.

After the testing was complete, the wires were detached from my scalp but the sticky residue from the paste was left behind. I wadded up my hair on top of my head in an effort to forget about it.

I excused myself to the bathroom while the results were being read, and I did whatever I could to avoid upchucking all over this pediatric bathroom covered in childish decor. After I made my way back to the exam room, my mom, Grammy and myself sat there, waiting. It felt like hours, and I still felt like I needed to puke.

The doctor came in – “Based on your test results and recent history, I can confidently say that you have Juvenile Myoclonic Epilepsy.”

I was in shock, and I don’t think I entirely processed all of what she was telling me. I couldn’t connect the dots – me? Epilepsy?

She had made me aware that the muscle jerks I had experienced months before were not due to a build up of lactic acid – they were myoclonic seizures. If left untreated, myoclonic seizures can progress into a general tonic-clonic seizure (also known as a grand mal seizure), which is what I had experienced on Thanksgiving.

I was prescribed anti-seizure medication, Keppra to be exact. I was prescribed a very high dose at first, which myself or my parents did not realize until a later date. And that’s because the medication didn’t seem to be helping, only hurting. I was more exhausted than ever, I could hardly get out of bed and I was constantly in a foggy state of mind. If I wasn’t glued to my bed, I was having myoclonic jerks. My dose was eventually lowered enough to allow me some functionality.

Life After Diagnosis

My mom sent an e-mail to my high school to relay to all of my teachers. She wanted to make everyone aware why I was missing so much school, and if my teachers could send anything home with my twin brother to help me catch up, to please do so.

When I finally arrived back at school, my teachers were extremely understanding and did anything they could to help. However, my first class of the day was a medical assisting class. Maybe it was a coincidence, or maybe my situation brought to my teacher a better realization of how seizure disorders have little-to-no awareness or representation. Because we immediately began learning about them.

She played a video for the class of someone being monitored in a hospital, and the patient was having a seizure. I kept my head lowered and I couldn’t take my eyes off of my shoes, because how humiliating. Not to mention, I didn’t want to see what I might look like while having a seizure.

To me, seizures weren’t that scary. After all, I hardly remembered a collective hour of Thanksgiving Day due to my seizure. The worst part for me was watching my parents react – my mom still cries to this day every time it’s brought up. And of course, my tongue had been bitten and swollen, I slept a lot and had some bad headache here and there. But it wasn’t really the seizure itself that scared me – not back then anyway.

As I continued within my Epilepsy journey, I didn’t take it as seriously as I should’ve. I rebelled a lot. I was in denial that my childhood had practically been ripped from me. I had quit dance classes, I couldn’t drive until I was 6-months seizure-free, and if I got any less than 8 hours of sleep, I was a ticking time bomb of anger and epileptic twitching.

During one of my follow up appointments with another neurologist, I had undergone yet another EEG. This one obviously wasn’t for diagnostic purposes, but rather to see how well I was doing on medications. Long story short, the progress wasn’t what we had hoped. My EEG read that when under distress, I was having absent seizures as often as every 30 seconds. An absent seizure can cause something as little as staring off into space, or a black out. When I do have them, I typically don’t recognize them for what they are.

So again, my medications were adjusted. At this same appointment, my neurologist had asked if I was experiencing any sudden changes in my mood, or increased feelings of anger to which I replied no – “Yes she is” my mom quickly interjected. I didn’t notice it, but I guess everyone around me did – I was very moody. This is common with some seizure medications, in fact there is a term called “Keppra Rage” amongst the Epilepsy community. And I was suffering from it.

Luckily, my neurologist had given me advice on steps to take, and some vitamins to incorporate into my routine to balance out my attitude issues.

I’ve had my fair share of EEG’s since then, one including an overnight stay at Nemour’s Childrens Hospital for a full 24-hour EEG. While not the most fun I’ve ever had, my nurse was phenomenal. I remember expressing that I was embarrassed – my friends were coming to see me and “I look like a mummy”. While she didn’t disagree, she did her best to braid my hair outside of the bandages around my head and shower me in kindness.

In the same year, by the skin of my teeth and with a ton of help from my teachers I passed my junior year. Of course, not without the attendance lady getting onto me for missing so many days of school.

Eventually, my seizures became few and far between. Only happening 1-2 times a year, and at one point in time I had gone over two years without a grand mal seizure. However, these milestone don’t include myoclonic seizures,

If I don’t sleep enough, become too stressed, or even when my hormones become out of whack, I will encounter myoclonic seizures and muscle jerks. As I got older, they didn’t come alone. These jerks were a warning – they would indicate that a grand mal seizure was coming. The more I experienced them, the more I knew how to combat them and prevent a seizure. I would either take some extra medication (neurologists, don’t come for me for this), I would lie down and close my eyes, focus on my breathing, or most of the time I would literally just fall asleep. They aren’t just seizures – they’re signals from my body, telling me that I need to rest.

While my Epilepsy journey has been much easier than most, I have still struggled with the embarrassment or fear that comes with it. I’ve had seizures at work, in cars, at parties, at my friends’ houses, and my most recent one was butt-naked right in front of my indoor home security cameras :’)

My most recent seizure was May 13th of 2022. (the butt-naked security footage one). My girlfriend was my only witness, and it truly was one of the easier ones for me both during and after the main event itself. Don’t get me wrong, I did lose consciousness and my tongue had a pretty gnarly bite wound, but the time it took me to come out of it was relatively quick. Shortly after, my medication doses were increased yet again. And honestly ever since, I’ve been doing really great. *knock on wood*

I often joke that seizures aren’t nearly as bad for me as they are for those who happen to witness them. Which is only really a half-truth. Seizures terrify me.

The more I have them, the longer I try to hold consciousness. To cry out for help or get myself into a safe position. While seizures do mainly feel like an uncomfortably long nap for me, the auras can be really scary. Whether it’s nausea, uncontrollable twitching, or my muscles and sometimes even my jaw completely locking up on me – I am conscious for all of those things. The lack of control is scary.

The recovery is difficult too, leaving me feeling like my body has literally been thrown around like a rag doll against a concrete wall. The headaches and the tongue wounds, sometimes the bumps and bruises on my head and along my body from seizing on tile or against a wall – it’s painful.

However, I’m thankful for the periods that I do lose consciousness. It sounds silly, I know. But if I were to remain aware of my surroundings while not having any control over my body for that long, the fear would be far too overwhelming. So, big shoutout to any witnesses that I have traumatized over the last 9 years! <3

I have my moments, which sometimes turn into days. But for the most part, I am overfilled with gratitude that my Epilepsy is as manageable and as tame as it is. I truly am one of the lucky ones, and I kick myself for how often I take that for granted.

Regardless of the fact that I myself am able to cope with my Epilepsy rather easily, I struggle with the burden I put on others because of my brain disorder. While I know everyone means well, I hate that they have to worry. They worry about me staying up too late, having taken my medication, being too stressed out, or anxious. The fear that I cause others can feel almost crippling. No one really talks about how much of a burden Epilepsy can cause to those who don’t have it.

No one really talks about Epilepsy period.

Which is why I’m telling you about my journey – to raise awareness. While my journey is rather manageable, that doesn’t mean that the Epilepsy experience is linear.

1 in 26 people will be diagnosed with Epilepsy in their lifetime, and while seizures don’t always lead to an Epilepsy diagnosis, they are very serious. Talk about it. Educate yourself on it – Know what to do in the event that you witness a seizure.

If you too are struggling with a medical diagnosis — you are not broken. You are not weak, you deserve understanding and you deserve access to adequate healthcare to treat and/or cure what you’re experiencing.

You are capable, you are strong and you are a badass.

I love you. Thank you for being here.