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How Life With Epilepsy Can Be Like a Roller Coaster Ride

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For years now I’ve described how challenging this epilepsy roller coaster can be. It’s a ride I will never wish on anyone, but for me, it has been totally worth the challenges. The daily challenges are what drive me, and I have had the pleasure of joining so many other people on this roller coaster. While it definitely has its wild twists and turns, it’s a ride we can get through together. I would love to hear what your ride has looked like!

Other relevant stories:
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Let’s Go

As you get settled to ride a roller coaster, the first thing you do is fasten your seat belt. That’s also the first thing I did too (sort of). I was living the 9-year-old’s dream — playing with friends, going to school, and killing it in Little League sports. Then one day, in a matter of minutes, it was time to fasten my seat belt, because I found myself in the back of an ambulance after having my first seizure. After having a few grand mal seizures in school, it was clear that I had epilepsy. It was time for me and my family to gear up for the upcoming epilepsy challenges.

Hang On During Those Turns

What fun would a roller coaster ride be without wild turns and twists? I know my epilepsy roller coaster has had plenty of these turns, and I bet yours has too. I was cruising along just fine throughout middle school without any seizures, and then out of nowhere, they came back during high school. As I began my switch to high school, I had the pleasure of having to deal with those fun seizures again. I was able to slowly navigate my way through all this, but during it, I lost my license, dealt with serious side effects like double-vision and much more. These were some major turns on my roller coaster ride.

Oh Boy, Those Are Some Steep Climbs

We all know roller coasters have those steep climbs to the top of the ride. Well, many people with epilepsy know all about climbing from the bottom. We can get hit with some very scary challenges we don’t know if we’ll be able to overcome. When I found out I was going in for my SEEG, I knew it wasn’t going to be easy, but I didn’t think it would last that long, consuming so much of my mental and physical strength. Feeling those auras and the after-effects of having my grand mal seizures again sucked, but in the end, we knew it was worth it for future treatments. It was a scary two weeks and only my parents and a few friends know what I went through. I never want to go up that climb again.

Finally Some Calm Sections

Every roller coaster has them, and so do we. They’re sections where we can just breathe. For me, these are times where I’m able to have fun with friends and family. Whether it’s going to bars downtown or sporting events with my family, these are times where I can forget about my seizures and just have fun. If I really want to forget about my seizures, you’ll find me on the golf course trying to break par, or out on the water enjoying the sun! It can be hard for me to put epilepsy aside, but I have so many people that help me.

Time’s Up?

Absolutely not. We know the majority of us will continue to ride this roller coaster for the rest of our lives. The challenges we get handed are not fun, but we deal with them. If I can give you one piece of advice; only control what you can control. Don’t worry about things you have no power over. We can’t schedule our seizures, anxiety, panic attacks, etc. It all sucks, but we can’t let this roller coaster ride hold us back from living our lives to the fullest. It’s a marathon, not a sprint!

As we move along on our epilepsy journey, we now can see exactly how much it resembles a real roller coaster. It’s twists, turns, ups and downs. It’s not easy, but we deal with everything that comes our way.

Getty image by Xavdip.

Originally published: April 18, 2020
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