It's been a year now, how am I feeling? I feel better than I did. I'm so glad I'm past the hard parts. Was I devastated the day it happened? No, not really. Was I afraid? Not in the moment that it happened; I was just mostly confused at the time. The feelings of fear came later. Do you regret how things happened? I couldn’t change anything. Literally, I just woke up one day and my whole world was so different.
That day, I woke up so confused. I was in my old apartment building. How did I get back to Utah? I had no idea how I got there. I had no idea who all these new people were. I assumed they lived there now, but I wasn’t sure, and was not about to ask. And oh goodness, did my head hurt. It hurt really bad. This was not good. I walked around in a daze, trying to figure it all out. I finally texted my mom, asking how I had gotten there. She responded with, “You drove up there with your friends. You’re there to visit Sydney and go to General Conference, remember?” Wow. Right. How could I forget? I had been planning this trip for weeks. My head was killing me. I hadn’t been drinking or anything like that, why did my head feel so weird? Why, why, why?
“Heyyyy….so like…you had a seizure type thing.” I was so confused. “What,” I asked the roommate who’s name I didn’t know. “Yeah, you were sleeping, but then you were like convulsing in your sleep…like a seizure.” My brain was still so fuzzy, I just kind of walked back into the bedroom and tried to figure out what to do. Me? A seizure? Were they lying? Walking back out, I asked, “Was I making any weird snorting noises or anything?” “Yeah, you were like doing something like that.” Okay, that was good. Snorting/gasping during a seizure means that you’re breathing. My brain was so fuzzy that the idea of going to the hospital didn’t even cross my mind.
I sent a text to Sydney, who was at work or something, I really don't remember, letting her know that I’d had a seizure. It was only then and because of Syd’s idea that I agreed to go to the hospital. Fast forward a couple hours. I had told my parents everything I that I could remember. At the hospital, I’d had a few tests done, but the doctor said I was all fine and should go home and get some rest. I didn’t even want to think about seizures. My parents wanted me to come home right then. No staying in Utah with my friends and then driving back later. My dad arranged for me to fly home early the next morning. I remember being really, really tired. Apparently, having a seizure really does a number on your mind and body, so I slept a ton. Soon after that, the doctor visits began. I first went to a neurologist who pretty much refused to speak to me. He wouldn’t even look at me. It was really weird. He really only listened to or conversed with my parents. I hated that. To make matters worse, I wasn’t allowed to drive, either. I understood it was for my safety and for the safety of other drivers around me, because of my supposedly “unstable” condition. So, stripped of my independence, my parents drove me to and from school every day. Bless their hearts. I was not a happy camper when I had to ask for rides whenever I wanted to go somewhere. Tasting independence and then losing it was not fun. I had a lot of friends and people from my church who were willing to give me rides, but I hated asking. I was not about to be someone else’s little burden.
During this time, that doctor, (ya know, the one who wouldn’t look at me?) had put me on an anti-convulsant medication called Keppra. He had said that lots of people who had seizures did very well with this medication. I didn’t have any sort of diagnosis, but my parents and I were desperate to return me to my normal state of functioning. This doctor promised that if I did well with this medication, I’d be able to start driving again.
I hated the way that this medication made me feel from the very beginning. I was always sleepy during the day, but had trouble falling asleep at night. I was tired of my friends at school asking me if I was on drugs because my voice sounded super spacey. (Let’s face it, I felt super weird and pretty much was on drugs.) When we called him about this, he said to stay on it, hoping that these side effects would go away. They didn’t. We persuaded him to lower my dosage. It didn’t make much of a difference, but he wanted me to keep trying.
I then moved to Idaho for school. This is where things went from bad to worse. I got a gnarly concussion from a bad sledding accident my first couple weeks there. I was still on the evil medication. After this, I had more trouble sleeping, focusing in school, fits of nausea, and was so emotional. All the time. My emotions were so out of wack that I cried all the time. I was so irrational. This had to stop. I finally got an appointment with a new neurologist at the University of Utah.
After telling this new doctor my whole story, I was overjoyed about a few things. First, that this doctor listened to me when I talked. I felt so much more valued as a patient. Not only did he listen, but after I mentioned I’d had trouble learning the 12 cranial nerves for my Anatomy class, he perked up. He did a test that actually involved making sure all 12 of my cranial nerves were doing their job. He went through all the nerves and functions with me while doing the test and wished me well on my next anatomy exam. I was so happy that he had taken the time to speak my language.
He said that as long as I wasn’t driving, I could gradually stop taking my evil seizure medicine. He gave me the diagnosis of Primary Generalized Epilepsy. My problems now had a name. He also said I needed to get some neuropsychological testing, whatever that was. Apparently it would help see what damage the concussion did, as well as maybe give some information about my seizures.
A couple months later, I had to go to a testing place and do a series of visual, emotional, math, English, and a variety of other types of little tests to see what parts of my brain might be having a problem. The testing took about 4 or 5 hours and if you think I was horribly bored and tired and miserable, you’re exactly correct. A few weeks later, we got the results back. The testing showed that I had depression, anxiety, deficiencies in my ability to focus, issues with verbal processing, and my ability to process visual things. Was I surprised? No. I knew I was having trouble functioning.
Fast forward a little bit. I had been having these terrible episodes where I would get so nauseous and my heart would speed up and I’d get all sweaty and I pretty much would just freak out. I thought they were anxiety attacks. My parents and I decided that we should go get a second opinion on my whole epilepsy thing. My dad’s lawyer friend recommended an epileptolgist that he used as an expert witness during court cases. It took a few months just to get an appointment, but it ended up being so worth it. I took both my parents to this appointment and we told her the whole story. She ordered a sleep deprived EEG, which is a test that measures all the weird activity in your brain, and can help tell what type of epilepsy you have. The sleep deprived part meant that I had to stay up alllllll night before I went in for the test. A few days later, after a long night, my parents and I got into the car for the long ride to her office. My mom was afraid that I would fall asleep in the car. She sat in the back with me, feeding me ice cubes because I was falling asleep. I paced the waiting room when we got there. I was determined not to fall asleep yet. The test went by fine and easy, I wish I would’ve taken a picture when they put a zillion electrode things all over my head. I was a sight to see. A couple days later, the doctor called and informed us that I did in fact have Primary Generalized Epilepsy, which pretty much meant that no specific part of my brain was acting up during my seizures. She prescribed me a different medication, which I’ve been taking for 3 weeks now. Do I like it? I like the way I feel on it, my weird nausea episodes have completely gone away, the doctor suspected that those were seizure auras, which aren’t good. Will I have to take the pills forever? Probably. But if I’m stable enough for a couple months, I’ll be allowed to start driving again and things will be more normal for me.
It's been a year exactly since my last seizure. October third. I have learned so much since then. I could go on for days, but I’ll just include my biggest lessons. I understand that I have to be patient with myself. Things will not always go my way, and dragging my feet during difficult times will not help anything. I also learned that I need to let people help me when I need it. I can’t do everything by myself. And letting other people help me allows them to learn and grow, as well.
Do I resent these experiences? No. I learned some very valuable lessons. Looking back, I might have done some things differently, but in the end, it’s been sort of a blessing. What are my plans for the future? I am planning to enjoy the gift of life. I love to dance and read and write and explore and surf. I’m planning to do all these things and do them well. What would I do differently? In the future, no matter the circumstances, I am going to smile more. It doesn’t fix all the problems all at once, but it helps make things okay for just a minute. And sometimes, that’s all you need.
