Purple Day 2019: My Story and Why I Wear Purple

In my family (and by family, I mean immediate family ― mom, dad, brother, sister ― because my actual family counting all my living relatives is huge), I feel like I've always generally been the least healthy one. It's not like I grew up with a serious illness or got sick all the time or anything. I was just always the one who seemed to have the most little health issues.

When I was around 4 or 5, my ankle would often feel weird and painful so much that I wouldn't want to walk. (I don't know what was wrong with me then because I haven't been able to look at my medical history, but it did stop.) I got nosebleeds a lot as a kid. The nurse and my teachers at my small Catholic school were never surprised whenever I got one. My vision is the worst and always has been of my family. I have pretty thick lenses in my frames. I had braces longer than both of my siblings. I had to get gum surgery two or three times.

But none of those health issues really compare to this: I've had two seizures ― technically three if you count the time I had tingling in my left arm and foot which the epileptologist said was a seizure that never spread to my entire body.

Not many people know my story, but as a writer, it just makes sense to at least try to share my own story in a gesture of support to those who can relate and to raise awareness.


Seizures aren't like any other health issue I'd dealt with before. None of those other issues were scary to me or my family. (I do admit I was nervous to have gum surgery at first, but it's really not that bad. Wisdom teeth removal is probably worse.) I can live with terrible vision, and I don't get nosebleeds often anymore. But leading up to my first seizure, I was quite terrified.

It was late November/early December 2012. I'd been getting the worst headaches I've ever had, and I didn't know why. Drinking more water didn't do anything. Consuming food or more sugar made no difference. I was getting a decent amount of sleep every night. Nothing in my life or behaviors had really changed to explain the pounding headaches that intensified whenever I moved.

The only thing that helped was taking ibuprofen. But that only lasted so long, and you're recommended to not take it more than a certain amount of days in a row because of heart health risks. A few days or so passed by, and it wasn't getting any better. My mom was worried, and I was, too. So I missed a day of school to go to the emergency room.

It was my first time in an emergency room, so I was quite scared. I had no idea what was going on with me, and I found emergency rooms rather frightening, because unless you had just broken a bone or experienced some sort of physical injury where you knew what was wrong, something must be really wrong with your health, life or death. Otherwise, you'd just see your normal physician.

I'm pretty sure I cried because of how afraid I was. I didn't know what was wrong with me, and I just wanted these headaches to go away. The doctor there said they must be migraines or maybe I needed to see the eye doctor since I hadn't gone in a while (the headaches were always at the front of my head, above my right eye). He said I could still take ibuprofen to help ease the pain since I wasn't at risk for any heart problems. And that was it. No tests. No exams. Nothing but sitting on one of those emergency room table bed things.

So I went home and thought I was getting migraines and that I should go see the eye doctor soon. But then one day passed, and I had a seizure.

I feel like I've had to tell this story to doctors a million times that it sometimes still feels like yesterday. But it wasn't. It was actually six years ago. It was a Friday, and I was at lunch, sitting on a round backless chair in the cafeteria. I was almost done eating my Chinese bakery hot dog bun ― my favorite from Chinatown ― and was in the midst of taking a bite when everything felt wrong. My mouth felt weird, tingling. My jaw opened pretty wide, wider than I feel I'd ever opened it before ― I have a small mouth ― and felt like it was cracking. I fell backwards off my chair and onto the ground, my poor half-chewed lunch spewing out of my mouth. And that's all I remember.

I don't remember shaking and convulsing uncontrollably. I don't remember not being able to control my body. I don't remember my honors economics teacher rushing over to me to help. I don't remember the paramedics coming to the cafeteria. I don't remember going in an ambulance or to the hospital. I don't even remember being in the first hospital I was at, and I was there for hours.

And I definitely don't remember the look on my sister's face when she realized what was happening to me. I don't know what she looked like in that moment. I know her well enough to know she was scared for me, though. I don't know if everyone in the cafeteria was looking at me. I don't know if everyone in the cafeteria was wondering what was going on when paramedics came. Because the next thing I knew, over 12 hours had passed, and I was around 30 minutes away from home in a hospital bed.

Waking up, not knowing where you are, what happened to you, the last 12 hours (at least) of your life erased in your mind, was absolutely terrifying. I don't even think I knew I had a seizure when I woke up in that hospital bed.

When I woke up, my mom was the only other person in the room, but then a nurse came in soon. I don't remember whom I spoke to first, but I know the nurse asked me the standard questions: "What's your name?" "Do you know where you are?" "What year is it?" "Who's the president?" "Do you know who I am?"

I don't really remember much of what else happened that day I woke up. But I do know that I was not unconscious for the entire time I have no memory of. I was awake in the other hospital, and it was apparently hard for the staff to restrain me there, to get an IV in or whatever they needed to do. Like I said, I don't remember even being in that first hospital. That's when I realized this seizure took something from me that I could never get back.

My first seizure was a result of viral meningitis. I guess all those headaches were trying to tell me that. So after that, I was put on anti-seizure medication, which I didn't even know existed until then. I was no longer worried about being sick or having any more seizures, because I had gotten medicine for the meningitis and thought the anti-seizure medication would prevent me from ever having another seizure.

I was wrong.

Four years and two months passed when I suddenly felt tingling in my left arm and foot. I was sitting in one of the College of Media computer labs at the University of Illinois, where I was in the middle of my final semester. I was working on a journalism assignment when I noticed the tingling. At first, I thought maybe my arm was falling asleep. But the tingling felt different than when your brain's telling you "your arm/foot/whatever body part is falling asleep," so I told my sister, who was sitting two seats down from me.

I remember she stomped on my left foot to see if I could feel anything, to see if I was numb. (The mark from the bottom of her shoe is actually still on the shoe I wore that day.) I felt it. So I wasn't numb. But the tingling was still there, and it still felt weird. A few minutes passed, and it wasn't going away. That feeling of panic and worry, that feeling when you don't know what's wrong with you so you're scared something's really wrong, came back to me like I was in the emergency room four years ago.

Thanks to my best friend Carly (and her boyfriend and now fiancé's car ― thanks, Grant!), I was able to make it to the emergency room after realizing the campus health center was closed for the day.

I remember sitting on an emergency room bed, the curtains around me closed for my privacy, and just struggling to put on the hospital gown they asked me to change into. The tingling hadn't gotten better, and apparently my motor skills were malfunctioning, because I just couldn't get the gown on no matter how hard I tried. I didn't know which way it went on, and I physically could not get my arms and hands to do what I wanted so I could put it on. I tried and tried for minutes, eventually giving up and asking a female nurse passing by to please help me.

Not only was I frustrated by the fact I couldn't put on the gown, but I was terrified. This was a whole new problem to me. I'd been in a hospital room before. I'd been in an emergency room before. But there was this weird tingling feeling on the left side of my body (I know if something's up with your left side of your body, it could be a stroke) that I didn't understand, and on top of that, I literally couldn't change into a hospital gown by myself. My motor skills had never failed me before, and it's not like I broke a bone or tore a muscle.

Once again, I ended up crying out of fear and worry, so scared of what was happening to me and why.

And then there was something I didn't even notice because I can't see my own face. Apparently the left side of my face was also drooping a bit, so that wasn't good either.

That was on a Monday night, and my parents made the two and a half hour trip to Champaign to be there for me. I don't really remember getting an explanation of what was wrong with me and why that happened. I do remember being on stroke watch or whatever they call it. I remember the nurses and doctors being surprised a 21-year-old girl was on stroke watch. I remember the doctor increasing my dosage for my anti-seizure medicine and putting me on aspirin. (I honestly didn't even know doctors ever prescribed aspirin.)

But by the end of the week, it was like nothing had happened. My parents went home Wednesday or Thursday and went back to work. That Friday, I was covering an Illini women's gymnastics meet like I always did during spring semesters. So I thought everything would be fine.

I was wrong.

Even thought they'd just been there, my parents came to visit me that Saturday and bring me my new prescriptions since I still got all of those done at my home pharmacy. We did the usual whenever they came. We ate lunch. We did some grocery shopping. We sat in my and Ashley's apartment and watched TV. It was NBA All-Star Weekend, so my dad was excited to see the dunk contest and three-point contest. They left before the night's events were over, though, since they had to drive back home. So they left, and Ashley and I continued to watch All-Star Weekend.

They were in the middle of the dunk contest, I believe, when I suddenly felt weird. I don't know how else to describe it other than weird. I just knew and physically felt something wasn't right and something bad was about to happen. I was sitting on the couch and called out for Ashley and started falling over. (Thank God I was on a couch this time and not a backless chair!) That's when I had my second seizure.

Again, I don't remember any of the actual convulsing. But I remember much more from my second one than my first. I have slight memory of being in the ambulance. I remember the paramedic asking me questions. He asked if I know who he was. I said he worked with the hospital. He said he was a paramedic. So while my answer wasn't exactly right, at least it indicated I was somewhat aware of what was going on.

The next thing I knew I was in another emergency room hospital bed, the same hospital I was at just a few days before. But this time I was in an actual room, and not just a curtained area where four or five beds were in one big room. I was thankful to have known what had just happened to me, unlike the first time when I woke up in a foreign hospital bed with no memory of the past 12 hours or so.

I remember seeing my mom, dad, and sister sitting in chairs along the wall to my right. My parents were about halfway back home when they turned back around. Not long after, I remember Carly coming into my room to see me. I was glad to see her and have her with me, though it was for 20 minutes tops. I remember my mom mentioned she needed to eat something and Carly offered Girl Scout cookies because she had Thin Mints with her. Looking back on that moment, I have a lump in my throat like when you're about to cry, because I am so lucky to have a such a kind and considerate friend like Carly.

The first time I had a seizure, a few of my friends did want to come visit me, but my mom never let them, so I missed my friends for nearly a week. So to have had Carly the second (and/or third time around, depending on what you're counting) was so special and means the world to me.

I don't think I was in the hospital for more than four days that last time around, but I do remember having to do a lot of different tests. I also had to explain and recount the story of my first seizure and my very recent hospital stay several times. While I definitely didn't want to have another seizure, it's actually sort of a good thing I did (I know that sounds really weird), because I finally found out what was going on with me.

The first time I had a seizure, I remember the doctor explicitly saying I don't have epilepsy. The last time, I didn't hear anyone say that, but the doctor did explain to me and my parents what was wrong with me.

To my right of the hospital bed was a computer and a screen, and on that screen was an MRI of my brain. It turns out I have a lesion in my brain, specifically a random group of neurons in my brain kind of just sitting there where they shouldn't be. Because of that, certain things, like meningitis or hormones, can trigger seizures.

As a woman, I obviously have hormonal changes happening every month because of menstruation. That last seizure happened to be around that time, which explains the timing. I'm not sure why that didn't happen any other time I had hormonal changes in the past four years. It could be stress, which could make sense since I'd had a lot to do during the week leading up to it, but I honestly didn't feel stressed. I just had a lot to do. It could be sleep, but I was sleeping more than I was in high school. It could be the fact that my anti-seizure medicine dosage was actually pretty low and not that effective.

Whatever it was, it taught me that there are a lot more important things for me to worry about than my grades or my social life. All of my schoolwork and extra-curricular activities had to be put on hold for about two weeks when this happened to me in 2017. (Because of that Monday hospital stay, Ashley and I had to cancel a fun Valentine's Day yearbook meeting where we were going to have treats and make crafts). I couldn't continue doing any of it if I didn't take care of myself first.

It also taught me how to balance things in my life. As a second-semester senior, I didn't have much time left. There were fewer than 15 weeks left in my educational career, but I was not going to let my seizure take away my ability to finish on time. It definitely wasn't easy as I was playing catch-up for quite a bit of the remaining semester, especially with my journalism class, but I did it. And I have never been prouder of myself than when I graduated in May 2017, just three months after a seizure and two hospital stays got me all off track, especially because the seizure slowed down my motor skills for a little bit. (I'm a pretty fast typer but couldn't type or write as quickly as I normally do shortly after the seizure.)

I remember sitting in my journalism professor's office at the end of the semester as everyone had an end-of-the-semester meeting to go over their work from the semester and discuss their final projects, and I was crying during that meeting. None of my professors know what exactly hospitalized me, but they knew I had health issues to deal with. And so when he addressed how I was out and hospitalized and had to come back from that, tears began to fall. It felt weird to cry in front of my professor, and I didn't even try to wipe the tears away. I just let them fall. I wonder to this day if he even noticed, but I just let them fall, because talking about and thinking about my seizures makes me emotional and often makes me want to cry, if not actually cry, because of  what they've done, what they've taken away from me, and how they're the hardest thing I've ever had to physically and emotionally deal with. But not a single one of those seizures has stopped me from accomplishing my goals. I can't and I won't let them take my goals from me.

So that's why I wear purple. Purple Day is March 26, and it's an international day of support and awareness for epilepsy. (Purple is the epilepsy awareness color, like how pink is for breast cancer.) I don't have epilepsy, but I have a history of seizures. So I know what it's like to suddenly lose control and for your brain to malfunction. I know what it's like to have chunks of time and memories missing from your brain because a seizure took them away. I know what it's like to have to take medicine every day on time so you don't end up back in a hospital. I know what it's like to dread and wait to be seizure-free for a long six months so you can drive again.

I don't have epilepsy, but I know it can take just two seizures to diagnose it. And I don't know what's going to happen to me in the future, but I want to support everyone and anyone who's had a seizure, epilepsy or not. Seizures can take away so much from people, so I want to give something, love and support, to those who've had them.



I was catching up on an episode of NBC's World of Dance last week. It was the first episode of The Duels, where dancers in the same division compete head-to-head in a duel. Canadian dance star Briar Nolet was one of the dancers competing in that episode. As a dance fan, I was already familiar with her name but didn't really follow her career. Her dance for The Duels was about her battle with epilepsy. Nolet said her hand shaking was how her seizures began, and at the end of her dance, she took that hand, the one that shook, and grabbed it forcefully, symbolizing how she wasn't going to let seizures and her epilepsy take over her life and her passion for dance.

That's why I wear purple.