I have epilepsy. This is something I know and deal with daily in the form of medication since I found out about it eight years ago, but I don’t think much about it from day to day. I’m more focused on things like keeping my kids alive and well and my house passably clean.
The other night I attended a writers’ group meeting where one of my short stories was being critiqued. The main character in the story has epilepsy and that’s the main conflict—she is afraid to leave her house for fear of having a seizure in public.
I know a couple of the writers in the group fairly well from working with them last year, and they know I have epilepsy, but the leader and the others didn’t know. As they discussed what they thought of the story and the main character, I told them I have epilepsy and gradually, as they observed that I wasn’t shy about talking about it, they asked more and more questions. What they got from me, were abbreviated tales of my first accident and not walking for 6 months, second accident, move across the country, various seizures in the middle of streets and at bus stops, etc.
As I was walking home from the bookstore after the meeting I thought of
you—friends and family who have been so helpful and supportive to me. It has gotten to the point where with the last few friends I’ve made (friends with toddlers my boys’ age) I’ve straight up told them (sort of pretending to joke) that being my friend comes with a price—there are always going to be complications since I can’t drive. Fortunately my new friends don’t seem to mind driving us to the zoo and having more playdates at my house than at theirs since it’s hard to get out to walk even a few blocks when it’s cold. I must exude awesomeness.
Without the help of you I would be quite stuck, both literally and emotionally. You have driven me all over and held my hands before and after surgeries, helped me relearn to walk, and those farther away have prayed and sent notes. Without a husband willing to do all the grocery shopping and to spend more money for less space to buy a home in a walker-friendly location with good public transportation, my life would be much more difficult. Here’s to you. I am blessed.
Later that night I got an email from a guy I know in the group. He told me I had a lot of courage to talk about my condition in front of the group like that, which got me thinking… I don’t consider it courage and that’s probably because of all the support I’ve had. I’m sure people have made fun of me, but I’ve never heard it, or rarely, and I participate in it sometimes.
Because I am (was) a teacher I’ve always had to be transparent about having epilepsy. To not do so would be dangerous. I tell my students on one of the first days of class, so they know what to do if I have a seizure. I have to tell administrators and teachers on my hall and hand them emergency contact numbers.
I can’t lie, I am dreading being a mom who can’t drive her kids to baseball practice or birthday parties. I hate the dependency I have on everyone. But you wonderful people in my life make it easier. I lead a slower-paced life amidst the rush around me, and that is probably worth something. It gives me more time to write and spend out of the car with the boys. Perhaps it aids in my creativity.
Anyway, the experience at the writers’ group provided the opportunity for introspection and counting my blessings. And I needed that. Thanks. I’m recharged.
I’m including pictures of our neighborhood that I get to walk around and our balcony in the spring because I long for spring to be here, but also to break up all this text.