http://talkaboutit.org/jj-abrams
1 in 26 people has Epilepsy. Did you know that? 1 in 26. That means someone you walked by today at work, in the store, drove by on the street... Someone your kid played with at school. 1 in 26.
We need to talk about it.
Someone my husband knows was recently affected by epilepsy. Someone in their family was taken to the hospital because they had a seizure and they've had a few more since. And this person has asked Randy for advice, and asked him a few questions, and I am SO glad that Randy has been able to help him and answer some of the questions. I remember when we were first going through everything and it was so scary. I was lucky- a friend from high school reached out to me, he has had epilepsy for a long time and he answered a lot of my questions and gave me hope. And it helped me. He also sent me a list of celebrities that have epilepsy and that helped. Seeing successful people that have it calmed me down SO much.
1 in 26.
I went to Disneyland over the weekend. I wonder how many people I walked by were also dealing with the fear I was dealing with-
-"Will this ride cause a seizure?"
-"This crowd is freaking me out, I hope I don't have a seizure."
-"Should I watch these fireworks?"
-"I'm getting tired, maybe I should go back and rest so I don't have a seizure."
I don't know my triggers- not really. So I never really know what might set me off. Luckily, I managed to make it through our trip without having any seizures. I don't know how because I was exhausted and overwhelmed but maybe the universe decided to throw me a bone because my surgery is coming up and I needed to have a fun weekend.
Since being diagnosed with epilepsy, I have been mostly open about it. At first, because of my dumb doctors advice, I didn't tell people, but then I realized in order for people to help me if I seize I need to tell them. (I also realized that doctor was an idiot.) Once I started telling people, whether it was just as simple as telling the receptionist at the pediatrician "Can we make the appointment a different time? I can't drive the kids anymore, I've been diagnosed with epilepsy so I need to make it for a time when someone else can drive us." and then finding out that her brother has it too, or finding out that someone's son has it when I apologize for being late because I had to wait for a ride (those were just generic examples, not true stories) or -and this one is true- having to call the dentist back and apologize and then ask for a repeat of our discussion, then explain that you have epilepsy and say "I had a seizure towards the end of our conversation and I'm not sure what was said. I know that I called you and explained what the appointment request was for, and I see that I started writing but then I have no idea what happened." She was sweet, checked on me, made sure I was OK, said that her friend is epileptic, and then we replayed the conversation and she sent me an email verification of everything.
1 in 26.
A friend recently told me that his coworker's brother was recently put on meds for his epilepsy. He isn't old enough to get surgery. They want to wait until his brain is done forming. (Brains don't reach full maturity until age 25.) He will be on meds until he reaches the proper surgery age and then he will most likely get the same surgery I am getting.
1 in 26.
It is so weird how often I hear these stories now. "My fill-in-the-blank has epilepsy" or sometimes it's just that they had one seizure. It's still a relatable thing. Or "My brother had surgery for that" or something along those lines.
1 in 26.
I go in 8 days for my surgery. Terrified is no longer enough to describe how I feel. I don't know a word that is five levels beyond that with anxious and nauseated mixed in though. Whatever word that is, that's how I feel. I'm trying to keep my focus on something else though, and I just want to help spread the word, it needs to be talked about.
Epilepsy awareness.
1 in 26.
65 million people.
Talk about it.
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