Things About Epilepsy Nobody Tells You
I have epilepsy
I have epilepsy, also known as seizure disorder. There is no cure so it's with me until the day I die.
Living with epilepsy is different but possible. For those who have been recently diagnosed, here are a few things to expect (that nobody will tell you).
My seizures started after a bad head injury in the Army. I did everything I could to stay and the Army did everything they could to keep me but treatment didn't control my seizures enough to meet military requirements.
In the end, I was medically discharged a couple years after my diagnosis. I'd be fine as a civilian but not as a soldier.
For the most part, people are understanding and supportive when I tell them I have epilepsy. If there is any kind of stigma, I haven't noticed it. Working with my neurologist, I was able to find a combination of (three) medications to help me live a somewhat normal life. At the same time a few things pop now and then; things that nobody told me. Here are a few.
Oh, before we begin there are a few things to remember: I have never told more than one person at a time that I have epilepsy. Also, what you are about to read is more than I have ever told anyone about living with my condition and how I feel about it. It's not easy for me so I need some mercy. Thank you.
Everyone's a babysitter... and it will drive you nuts
Now this one is tricky because seizures come in all shapes, sizes and frequencies. Some people with seizure disorder will need more attention than others. However, I can leave it to everyone I know to be extra delicate with me.
I have, on average, about two to as many as five seizures a week with my current medication. These are complex-partial seizures. This means that I see them coming. I have about five seconds to stop what I'm doing and sit down. Sometimes I can tell whoever I'm with that it's coming on. This is usually by loud grunt or just touching them on the arm.
If I miss a dose of medication then I can expect tonic-clonic seizures. These are the big ones everyone thinks of when they think of seizures. I still get the same warning of a complex-partial seizure so I have some time to tell others. Don't worry, I don't drive or use firearms. In fact, it's these restrictions that prevented me staying in the Army.
It is always touching to have people looking out for me but sometimes it can get ridiculous. When I'm in deep thought or even quiet for a few minutes, my girlfriend will turn to me and ask, "Seizure?" I say no but she doesn't believe me so she keeps looking at me. So whether a seizure is coming on or not she is now on high alert.
She is amazing and I love her dearly but epilepsy has turned me into a delicate flower.
Everyone's a hero... and it will drive you nuts
When the people around me notice I'm having a seizure, some of them freeze up. They've never seen a seizure before and don't know what to do.
Whoever I'm with, if they know about my condition, will probably back up and give me space. If there's any furniture or something that could cause injury nearby, they might clear that away.
Then there are the "heroes." These are the folks who have to "save the day." It's as if a seizure is a bank robbery in progress. The victim is in danger and must be saved! Unfortunately, these people have no idea what to do but do something anyway.
This will include something utterly inane but harmless such as shouting at me or shouting at everyone else. Other times it will be, in any other situation, criminal behavior. This will include grabbing my body or face, or trying to feed me my wallet. Still other times, one wonders if its heroics at all. This might be something like trying to slap my face or pouring a drink on me.
A cynic might think that these people just want a piece of the action. Everyone wants to be part of the circus. It's all eyes on me, right? Whatever.
I'm not an expert. I'm not a doctor. I'm just a guy with epilepsy and I'm telling you this: if you see someone having a seizure don't do anything. If the person is sitting/standing close to you, back up and give him space. He's had hundreds of seizures before and will have hundreds more to look forward to. Seizures don't last forever so let him ride it out.
If I'm wrong tell the readers what to do in the Comments section below. After that stay away from me forever. For everyone else who has to be a hero join the Army or something.
Everyone's an expert... and it will drive you nuts
While in the Army I was a medic so as soon as I was diagnosed with epilepsy, everyone in my department had something to say. This was fine with me. They were all healthcare providers and I wanted to know as much about epilepsy as possible.
They all asked me questions, too. This was about my symptoms and experiences with seizures as well as any family history of epilepsy (none). This was fine with me.
Today, I am no longer in the service. The friendly conversations of caring coworkers is replaced by noise. This noise doesn't stop, it just gets really annoying and really stupid. As soon as I tell someone I have epilepsy, usually I have to explain what it means. Not a problem. After all less than one percent of people have it. But for those who do know what epilepsy is, I can expect something like...
They know the cure. It might be one of the old school medications that they think I was never prescribed in the beginning. Or it might be some new blockbuster, as if neither I nor my neurologist has ever heard of it.
Better yet, I have to go for alternative medicine. It's all a conspiracy. My neurologist has to prescribe me pills to keep the drug companies happy. Nobody gets paid if I get cured. What I really need are herbs or crystals or something. That will do the trick. Oh, have I heard of "chelation therapy?"
But the one I love the most is that "it's all a mental thing." I love this one not only because of its face-palm stupidity but also because my father is certain of it. It's all about "willpower." Epilepsy is in the brain and so is... the... brain! I can win if I really really want to but if I'm weak then I'll lose. Yes, of course!
Everyone's an optimist... even me
"Hey, Champ! It's not the end of the world. You can do (almost) anything."
Actually, everybody probably tells you this and now I'm telling you. But in the beginning you hear it so often from so many people that it feels condescending. It's barely tolerable from your neurologist but now all these other people have to tell you. Then you become numb to it and you forget it.
Sure they mean well but do any of them know what it's like to have a tonic-clonic (or grand-mal) seizure? Do they know the fear that creeps inside, wondering when the next one will strike? Maybe if they also have epilepsy but not likely.
Then as time goes on, you realize that they're right. It's true. Life is different but fact remains: life is what we make of it. I decided to travel. I packed my bags and decided to see the world.
Below is a video of super-athlete Jenny LeBaw. She was diagnosed with epilepsy as a child. I watch it now and then to remind myself that epilepsy is not the end of the world.
For more information about epilepsy...
- Epilepsy Foundation
The Epilepsy Foundation is your unwavering ally on your journey with epilepsy and seizures. The Foundation is a community-based, family-led organization dedicated to improving the lives of all people impacted by seizures. We are here for you.
- Purple Day - The Global Day of Epilepsy Awareness
On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness