Living Life to the Fullest

Last October, at 23 years old, I had a seizure at a restaurant in Peabody, Massachusetts, while celebrating my friend’s birthday with her family. I woke up completely disoriented, with no idea what had happened. I couldn’t even remember the name of my friend’s dad, whom I had met several times.

After that, there were weeks of hospital visits, questions, and uncertainty. I was given a note saying I could return to work, but I had to go through a series of tests—a CAT scan, an MRI, an EEG. Then I had a more in-depth MRI to rule out the possibility of a brain tumor causing my seizure. I didn’t get the results for three weeks, which were probably the longest three weeks of my life. You’re thinking, “Do I have a brain tumor? I really don’t know.” Thankfully I didn’t.

At first, I pushed back against my diagnosis—in retrospect, a little prematurely. Before my seizure, I had booked a trip to Utah to visit my brother, Ben, who is a licensed pilot and paragliding instructor. We made plans to go paragliding the first day I was there. I didn’t ask my doctor’s permission (although I should have, and I've gotten better about that), but I didn’t even think twice about it because I was with my brother and I trust him.

Still, my diagnosis meant that I wouldn’t be allowed to drive for six months and couldn’t jump right back into running or skiing, which I’ve done all my life. Not being able to drive made me feel like this diagnosis was taking over my life. The small things I used to jump into my car to do seemed so much bigger, and constantly having to ask people to drive me where I needed to go got old very fast.

Then it dawned on me: I just want to live my life. I want to be able to run outside, I want to go to the gym, but I definitely don’t want to live in fear of this. So I gave it some time and talked with my doctor, and after a few months, I started running again. After a day at work, I don’t want to come back to my apartment and sit and do nothing. I usually run for an hour. That’s my time, when there’s no interruption, and I love it. I also grew up skiing and raced for years, so I went back to skiing this winter too. This summer, I’m planning a trip to Greece.

That being said, I’m still careful. I’ve heard of seizures being triggered by missed medication, so I’m super mindful about my meds. I’ve also heard that seizures can be caused by extreme stress and exhaustion, so I’ve made it a habit to relax and take a step back when I need to. It’s not something I want to experience again, so paying close attention to how I’m feeling day-to-day is important.

In that early period of diagnosis, you have to take it all in and give yourself time to feel. I’ve definitely had days of feeling frustrated and sad, but after some time goes by, it becomes easier and easier. You realize that your life is going to go back to being normal, but you need to be patient. It’s not something to be ashamed of, and it doesn’t have to minimize the things you can do.

Disclaimer: If you have epilepsy, do not try paragliding, or engaging in other active sports, without consulting with your doctors first.

EpilepsyAdvocate Spring2020