National Epilepsy Awareness Month

The Epilepsy Foundation’s email on Nov. 1 told me to “Get ready for NEAM!” Not sure what those letters stood for, I opened the email to find out: National Epilepsy Awareness Month. My daughter, Anna, was sitting next to me at our kitchen island. She is 26 and has Dravet Syndrome, a catastrophic epilepsy that usually begins in the first year of life with prolonged, life-threatening seizures that are resistant to treatment. Intellectual, physical and behavioral disabilities can develop. The time seemed right to ask Anna about what she’d like people to know about epilepsy, a subject she’s always ready to talk about. Below is an edited version of our conversation. Please note that we were in the middle of Special Olympics bowling season.

Me: What would you like people to be aware of, to know about epilepsy?

Anna: That it’s not an easy thing. That it’s challenging when you have epilepsy and seizures. Like I really want to do a basketball team. And maybe I want to do a basketball team for UofL. Is that possible for me?

It’s a lot. You struggle even when you’re trying to do certain things. I have struggled when doing certain events. I have done baseball, soccer, cheerleading, karate. I struggle for everything to be just right and to not have any more seizures. And to be seizure-free from everything and to be able to drive.

Me: What do you think is the hardest thing about having epilepsy?

Anna: It’s not easy to remember stuff or where I’m at and what I’m doing. And if I’m at someone’s house, I’m, like, trying to remind myself where I am and what I’m doing at that time. And it’s hard when I see new faces, new people around me, even if it’s just family stuff or a birthday or whatever.

Me: What do you want others to know about people who have epilepsy?

Anna: That you can be doing something and not know what is going on or happening.

And that if you see the person look like they’re spacing out, looking up at the ceiling, possibly at the stars, that they’re getting ready to have one right then.

Me: What do you want people to know about how to take care of you during a seizure?

That you have to do it a certain way. And if they were to help me they would need to know to put me on my side. If it was a really long one, that would be more serious. I may or may not need to be put in an ambulance or go to the hospital. And the ER would need to know to not give me the medicines I cannot take.

Me: What do you like to comfort you after a seizure?

Colorful things that I could snuggle with that aren’t going to make me sneeze. Stuffed animals, dolls, Care Bears, stuff that I could fidget with or write with.

Me: Is there anything else you want others to know about how people with epilepsy should be treated?

Anna: With kindness and respect and that they should be treated like anyone else, with love and compassion.

Me: Do people treat you differently?

Anna: I feel like they lift me up from that feeling that I’m not doing great. And I get a strike or a spare and I start feeling great about myself. And I feel like I’m being treated the same way and that they are helping me because I can’t do it alone. I can’t lift myself up alone. I can only do so much. With D. and all his friends, they are saying, “You can do this! Believe in yourself!” Like, “Come on! Knock ‘em down and get a strike or a spare!”

Me: Are there any good things about having epilepsy?

Anna: I know I’m not alone. Like, I know I’m not the only one who has it. Like M., she has epilepsy. She’s in a wheelchair plus a rocking chair. I have K. in my life. She’s in a wheelchair most of the time.

Me: How has epilepsy affected how you see the world and other people?

Anna: You really have to figure out who the person is and how the world affects them before you can begin on the hard decisions of their life.  You have to see them to know what their life is like because they might have something like Downs Syndrome or something that’s similar.

A final thought from Anna: I really love that Rachel (her dog) is in my life and that she’s with me even when I cry or anything. She’s there to comfort me no matter where I’m at.

To learn more about National Epilepsy Awareness month, visit the Epilepsy Foundation at https://www.epilepsy.com/.

For more information on Dravet Syndrome, here’s a link to the Dravet Syndrome Foundation: https://dravetfoundation.org/.

For more information on how to respond to someone having a seizure, here’s a link to the Epilepsy Foundation’s Seizure First Aid poster: https://www.epilepsy.com/sites/default/files/atoms/files/SFA%20Flier_HQ_8.5x11_PDF.pdf.