Humans live their lives in a series of firsts and lasts. We group sections of our lives together based off of things beginning and ending, creating a series of chapters that combine into one epic timeline. The last day of my eighth grade year should have cleanly concluded one chapter of my life. Instead, it marked the beginning of an entirely new and unexpected secondary subplot.
I was fourteen years old and getting ready to leave for my last day of Catholic middle school. I remember walking down the stairs in my fancy skirt and sweater, wearing a pair of heinous black patent high heels—the first I had ever owned—then nothing else.
There’s nothing more surreal than waking up in an ambulance. The first thing I registered was that I was freezing. The second, that I was not wearing shoes. I was incredibly disoriented, and tried to sit up. Big mistake—not only was I strapped onto a gurney, but my head was throbbing. I looked down to the doors to see two faces I recognized—my dad and my little brother—peering in as they shut the door. My mom was next to me, but the others surrounding me were completely unfamiliar. This is where things start to get blurry—I remember nothing besides flashes of the glass cases on the walls and people looking down at me.
At this point, I began panicking. When they stuck an IV into my arm, I tried to rip it out. I have never been that terrified in my entire life, and never have been since. At some point I was informed that I had collapsed in my kitchen while I was making breakfast, and had a seizure. I barely remember making it down the hallway.
Instead of pictures with my favorite teachers, I have a picture with the ER nurse from my time at the hospital. I showed up to school after my last day as a middle school scholar had ended, but made it in time for cake and a bombardment of questions from my classmates. Again, I can barely remember any of it, aside from the fact that I had to borrow someone else’s shoes on arrival.
The next several weeks were filled with doctor’s appointments, blood tests, a hellish MRI, an EKG, and repeated assurances that they were “just checking things out” and “it’s not uncommon for people to just have one seizure and be fine.”
Finally came the diagnosis: electric signals in my brain that showed up on one of the tests indicated that I had epilepsy. I remember sitting in the office thinking that I should feel something more than just mild hunger and sleepiness. Maybe it was denial, or maybe I was just numb to the whole thing. I didn’t understand what it meant, really. But I got a crash course the next few months.
Epilepsy is a chronic neurological disease that produces abnormalities in the standard electrical functions of the brain. This can manifest in numerous different ways—everybody’s brains and nervous system function differently, so everyone with epilepsy is a little bit different, almost like a spectrum. I fell into a category of what are called a “grand maul” or “generalized tonic clonic” seizures, which are characterized by unconsciousness, convulsions, muscle rigidity, etc. When people do bad imitations of seizures, or when you picture one in your head—that’s a generalized seizure. Epilepsy is in the top five most common neurological diseases in the world, but luckily 70% of those affected can control their symptoms with medication.
Flash forward to September and my start of Freshman Year. I was ecstatic to begin at the all girls’ private high school in my city, and completely start over. At this point, I had been on two different medications. The first made me so dizzy that sitting up in bed made me vomit, and gave me horrible mood swings reminiscent of bad sitcom characters suffering from aggressive PMS. I would be angry for literally no reason, and couldn’t figure out where the anger came from, so naturally I would break down sobbing. I was only on it for a few weeks. The second, however, only gave me one major effect—drowsiness. This was something that I felt I could cope with and combat with coffee consumption.
Then one day, about two weeks into school, I reading in the commons after school, waiting for my mom to pick me up. I was very tired, and fell asleep. An hour later, an office attendant shook me awake. I wiped the drool off my chin, as she asked why I hadn’t heard my name being called over the intercom. Apparently my mother had called me repeatedly when she arrived to pick me up, but I had fallen into a deep enough sleep that I hadn’t heard my phone go off. My mother panicked, went into the school, and the search began. After that I began on the same medication that I am still on today. The side effects I got from this one included mild insomnia and occasional dizziness when standing, likely to fade over time.
For my first year on the new medication, I had to go in every other week to get blood drawn to test my medication levels. This often meant leaving early or coming late to school. I would show up, pale and weak from giving blood (I was a tiny teenager), with a big cotton bandage on my skinny arm. Needless to say, my friends and teachers were alarmed. Being a shy and socially awkward fourteen-year-old starting high school is tough. Being a shy and socially awkward fourteen year old with a brand spanking new neurological disorder that you don’t understand with variety of weird side effects, the situation is a little bit more difficult to navigate. I had no clue what to say, so in my typical awkward filter-less manner, I answered with something along the lines of, “I have to get a bunch of blood drawn every other week because I started new medication because I’m epileptic so I won’t get seizures.”
Reactions, predictably, were mixed. Between my graceless honesty and the blunt intensity of my answer, I don’t blame my classmates for being a little bit put off. At the beginning, I didn’t even consider the fact that my being epileptic would make people uncomfortable. Until I saw it in their faces. Eventually, I just started saying that I had a doctors’ appointment.
The next point on my timeline comes a year later, the morning after my very first concert (Coldplay), which had featured a variety of strobe and laser effects. I slept over at a friend’s house and had forgotten my medication, but I figured missing one dose wouldn’t do much harm. The next morning I collapsed on her bedroom floor, effectively dampening the post-concert high (I don’t remember much from that morning but I do remember, in an attempt to cheer me up and get me to stop apologizing, my friend told me that there was in fact a silver lining—one of the EMS guys in her room had been cute. Unfortunately, I had been unconscious for that portion of the day’s events.)
This was a turning point for me. I gained full clarity as to the full implications of my disorder. My seizures had been controlled up until that point, but now my brain had betrayed me. I had been able to live relatively normally—I still went to school, maintained a modest social circle, and kept up my dance classes and performances outside of school. I could deal with the dizziness and irregular sleep patterns, and while the appointments were a nuisance, it helped contribute to a semblance of normalcy. My friends didn’t really have much knowledge of my disease except in a vague sense—I was fine, I took medication for it, they didn’t need to worry.
Now I was faced with limits. I went home and pulled up a website about living with epilepsy. I would have to wait even longer to get my learner’s permit and driver’s license. Airplanes posed a significant risk, as did 3-D movies, roller coasters, and any sort of bright flashing light. My insomnia will not improve with time, so I will be in a state of perpetual sleepiness and caffeine addiction indefinitely. Bonus fact to accompany this: Sleep deprivation often leads to seizures. I went to one of the most academically prestigious high schools in the state, and as luck would have it, epilepsy is apparently also often accompanied by learning and cognitive impairments, memory problems, concentration issues, and the ever present risk of missing school because of seizures, or worse, having a seizure at school.
I didn’t tell people that I had had a second seizure. How could I? It isn’t something you can just shoot your friend a text about. “Hey I had another seizure at a sleepover but don’t worry it maybe won’t happen again hopefully.” In my mind, people would think it was worrying, and wouldn’t want me over at their house, or to hang out with me one on one. I didn’t want to be talked about, and I feared the kind of label that would (I figured) come along with spreading this information. My high school was a very supportive place, but I was not immune to teenage insecurities and gossip.
The rest of high school was hard. I hated asking for help from anyone, which became an issue with my increasing workload at school. I refused to seek outside assistance for my focus and memory problems, and it began to show. Without the dedicated support of some of my teachers and family members, I doubt I would have made it out in one piece. But I was able to graduate in 2012 and go on to the University of Oregon.
This presented its own set of problems. While the workload for a freshman of the state university would be no where near as difficult as what my high school demanded, I knew that the teachers would be much less personal and understanding to the situation, especially with my stubborn refusal to declare my disability on any sort of assistance form.
As much as I tried to take part and engage socially, college culture does not lend itself well to disability. I definitely felt that I couldn’t participate fully in the social scene that the friends I made did. My first few years of school, I was adamant about not drinking at all. I knew that alcohol did not mix well with my medication, and further more, could trigger a seizure. While it wasn’t explicitly forbidden, I did not want to deal with having a seizure while surrounded by intoxicated students who wouldn’t know what to do, first of all, would get in trouble and have to face all sorts of consequences. I was perfectly willing to play it safe and tag along and be the sober friend, and tell everyone I wasn’t allowed to drink. I didn’t think of it as a lie—more of a convenient excuse.
It wasn’t that simple. While nobody thought less of me for not drinking, I still felt awkward and uncomfortable talking about it. If I tell someone that I can’t do something because I’m epileptic, people often clam up and don’t know what to say– they look at me like I’m about to drop and start convulsing right then and there. It was very alienating, and I became more and more withdrawn. I watched my friends undergoing all of these things that seemed to be key in the college experience, and I felt like I was missing out on so much. I didn’t want to be “that friend” who made everything about her and didn’t want everyone else having fun because I couldn’t. I tried to make it clear that I was fine with whatever we did, but I wasn’t. I hated weekends. The people I knew constantly commended me for how game I was for everything, and how it was awesome that I could go out and have a good time without drinking. Some of them knew why I didn’t drink, and those who didn’t would always offer me whatever they had and I would always just smile and say, “I’m okay.” That became my multipurpose catch phrase for University life. My grades, attitude, health, it was all “okay.” Upwards of 75% of those suffering from epilepsy struggle with depression and anxiety, and I soon began to feel their toll.
My first three years of college were hell. My grades rose and fell—my ability to focus was rapidly decreasing, and I found immense difficulty in completing assignments that at one point would have been easy for me. I grew more and more anxious in social situations, and struggled maintaining any sort of relationships. I had always been independent, but I grew to be intensely private (I avoid wearing a name tag at work because I don’t like people knowing my name), bordering on closed off. I stopped caring about my health and grades, procrastinating on homework, quit exercising, didn’t eat well. I didn’t feel any sort of connection to a semblance of life there, so I just let any sort of support system I have collapse. I didn’t tell anyone how much I was struggling. If it got to the point where I had to tell people about my illness, I almost always followed it with a “but it’s fine.”
I’m not entering my last year as a student at the University of Oregon, and hope to graduate next spring with a Degree in English, to pursue a career in writing. I’ve made it through my college career with only one seizure and minimal incidents. I took time off from classes, switched around medications, and began seeking help at the University Counseling Center. I picked up running, got a part time job, and started trying to eat somewhat healthier. I even allowed myself to experiment with alcohol after turning 21 (in cautious moderation). I have a small but solid circle of wonderful friends.
While I’m now feeling and doing better than I have been in a very long time, I still struggle with some of the limits that tend to accompany living with a chronic illness. The fear of having a seizure in public or with friends is constantly gnawing at the back of my thoughts. I still get dizzy 8/10 times I stand up from a sitting position. My grades have improved, but I still have problems with focus and memory. My sleep schedule is sporadic at best. If I miss a dose of medication, my hands and face will spasm and twitch uncontrollably throughout the day (many shirts have been stained by errant spillage this way). Most of the time, I function completely normally, but there are times when I don’t, and it’s frustrating not to feel comfortable with the truth. I still fluctuate constantly between over and under-sharing, never knowing which is appropriate. I never want anyone’s pity, but I want my friends to know what’s going on and don’t want to lie or be judged for what I can and can’t and do or do not do. I hate feeling vulnerable in that way, so sometimes it’s easier to just keep it quiet. Please remember that you don’t need to be able to see evidence of someone’s illness for it to be valid, and that the people who suffer invisible illnesses end up battling with more than just physical damages.