When I was very young, my mom noticed something “wasn’t quite right” with me. I would sometimes just stare off into space, and when she would finally get my attention and ask me what was wrong, I would respond, “Oh, I was just talking to God.” When I was in First Grade, my teacher called my mom one night, hesitant to mention she thought I might have seizures. My mom’s reaction was, “Finally! It took you guys long enough.” My mom had a friend with epilepsy and was sure she recognized the symptoms, but nobody ever believed her. Even when my EEG came back negative, she demanded to see the neurologist who read the scan, and in his office, he was able to induce a seizure to see it for himself.
Back then, they were called petit mal seizures. I guess today they’re called absence seizures. I would stare off into space, drop off in the middle of a sentence, walk into walls. While we held out hope that I would be one of those kids who outgrew it, puberty had other plans. Around the age of 13, I had my first grand mal (tonic-clonic) seizure. Like most kids, though, I refused to believe it was a problem for me and often fought with my parents over taking my medication. After an ambulatory EEG at the age of 18 proved I was still having frequent petit mals, and I still refused to believe it, my doctor threw his hands in the air and refused to see me anymore. I had one more grand mal seizure the night after I had the EEG removed, but then didn’t have any for six years.
I wasn’t taking any medication during those six years. I went to college, drove around in my car, had a full-time job, got married, moved 1200 miles away from my family, got divorced, moved back home, started dating again, started college again, started working again. About a week before my wedding to my new (forever!) husband, I had a grand mal seizure on my way to school. I had never even mentioned my epilepsy to him before. I wasn’t thinking about it at all, so why would it come up in conversation?
In fact, when I woke up in the hospital, my first inclination was to call my mom. When I did get to call her, she said she would come get me, then she asked if I had called Lars. My reaction? “Why would I call him? You’re my mom.” She said I was marrying him next week, and he needed to take care of me now, not her. Details…
I remember asking him if he was sure he wanted to marry someone who was “broken.” He assured me I wasn’t broken, and yes, he did want to marry me. It was a lot to take in. I had several grand mal seizures over the next six months. At one point they were two weeks apart, the most frequent they had ever been. I was afraid of being alone. I certainly couldn’t drive. I suddenly realized the importance of controlling the seizures and took my medicine religiously (I still do). That added another bit of drama, though.
Seizure medicines aren’t exactly good for the body. The particular medication I was on at the time was especially well known for causing birth defects. Newly married, I had to accept that I would probably never have children naturally. I was never officially diagnosed, but I probably should have talked to my doctor about depression. I was 23, unable to drive, in need of a 24-hour babysitter, and terrified of getting pregnant. I was a mess.
But we got through it. The seizures got under control. I finished school. I kept working full-time, mostly in retail, but briefly in web development. Every couple of years, my seizures will surface. Sometimes it will just be one, and sometimes it’s a group of them over a few weeks. We’ll change my medicines, and the seizures will subside. In 2009, we were blessed with the opportunity to adopt a beautiful little girl due to my sister having an unplanned pregnancy. Two years later, my husband had a great career opportunity that moved us 1200 miles away from our families again, but it also gave me the opportunity to be a stay-at-home mom and enjoy being the mommy I thought I’d never be able to be. Sometimes my ability to drive is interrupted for six months, but we figure things out and still get around to do things.
I think the most important part of my story, though, is that I have never EVER felt like I couldn’t do something because I had epilepsy. My parents were always encouraging me to do whatever I wanted to do and to never let anything hold me back. I don’t remember being bullied as a child about the seizures. In fact, a friend just mentioned this in a comment on Facebook to me:
We never thought about this stuff in high school. I mean, I was aware that this was a problem for you, but I don’t think it crossed any of our minds not to include you in something because of it. We all had our “quirks,” things that made us a little different from each other, and I think we just thought of that as yours – if we even thought about it at all.
It doesn’t hold me back. It never has. It’s part of who I am. I’m not shy about it. I tell anyone who spends even a short amount of time with me. It opens dialogue and allows people to become more educated about the condition. Considering how many people are affected by epilepsy and how little progress is being made to find a cure, a little more education in the world can’t hurt. So that is the purpose of this blog: to highlight stories of people who have accomplished things in life despite the issues they are faced with. Invite hope, and discussion, and education.