By: Bryana Cielo
If you know me, you probably know that I have epilepsy. You’ve probably heard me talk about it, maybe tell a story about one of my experiences or explain why it’s affecting a part of my life right now. Sometimes, it’s difficult for other people to listen to. But it shouldn’t be. That’s one of the biggest problems that surrounds the stigma of epilepsy – and so many other diseases and disorders.
A few weeks before I was diagnosed, I made a friend who has epilepsy. I had never met anyone before who had been affected by it. My first reaction was panic. What if he had a seizure in front of me? What would I do? How would I help? I barely even knew the difference between seizures and epilepsy. I didn’t know the first thing about seizure first aid.
I asked him to sit down with me to talk it over, and we did. The way he described it wasn’t so scary, and within half an hour, I felt a lot calmer. I learned that there are many different types of seizures and there’s a lot that we can do to help someone who is struggling.
Literally, three weeks later, I had my first seizure. I’m not big into all of that ‘it’s meant to be’ stuff, but meeting my friend 3 weeks before that couldn’t have just been a coincidence. I woke up, so confused, and it all began. A lifelong process of adjustment and acceptance that my life would be changed forever.
People make epilepsy sound scary – I’ve heard it all: the myths, guesses, and the half-truths. You can imagine the hours and hours I’ve spent on Google. I’ve come across thousands of facts. Some are all too real. You wouldn’t believe the statistics. You may have heard that, this past July, Disney actor Cameron Boyce passed away suddenly from a seizure. It was due to a condition called SUDEP, which stands for Sudden Unexpected Death in Epilepsy. SUDEP can affect anyone with epilepsy at any time. It’s the chance that a seizure can be fatal with no rhyme or reason. This, and other risks from the possibility of other potentially fatal injuries, can be the scariest part of the disorder.
I’ve been lucky enough to say that I have been stable for a few months short of a year (knock on wood). I have only had one physical accident: my very first seizure brought on strong enough convulsions that resulted in a torn labrum in my shoulder. When it happened two years ago, it felt like the end of the world. But now, I feel so lucky that it was just a small surgery and short recovery. The risk of suddenly passing out can lead to all sorts of dangers. It can be unsettling to get into the pool or the ocean, behind the wheel, onto a ladder, the list goes on.
Epilepsy is more anxiety inducing than anything, at least for me. It is terrifying to think that the next thing I know, I could be waking up on the ground with a crowd of people looking down at me. A few of the grand mal seizures I’ve had came on with no warning – one minute, I was okay and then, I wasn’t. Not to mention trying to keep up with my limitations and doctor’s orders: routinely taking medications, avoiding dehydration, sleeping enough, and steering clear of flashing lights. This lifestyle can be difficult, especially as a college student. Even if I’m not physically affected all the time, it’s always in the back of my mind.
The thing that makes me feel better is having the ability to educate the people around me. Last January, my roommate literally saved my life because she knew seizure first aid. I fell onto my stomach, and if she hadn’t known to turn me onto my side, I would have stopped breathing. But, there’s not always someone there who knows how to help.
I know I don’t only speak for myself when I say that the more people that are educated, the better we will feel. It’s scary to walk around campus by myself, knowing something could happen at any time. I wonder how many people really know how to help. It’s the same thought over and over: “If I had a seizure right now, what would happen?”
1 in 26 people have epilepsy. Chances are, someone you know has it. Can’t think of anyone off-hand? That’s probably because they haven’t told you. Epilepsy can make people feel very insecure, because there is a fear of being treated differently. And it’s a valid concern – I am treated differently. But that’s okay. I’d rather share this part of me than walk around wondering if the people around me are educated.
November is Epilepsy Awareness Month. As I ask every November: please take five minutes to educate yourself. It means more than you know.