The company I work for is based in California and a lot of us work remotely. As a way to stay connected and get to know our coworkers, they have a thing called “Community Chat” for 30 minutes on the first Friday of every month. People call in on Zoom and they’re broken into smaller chat rooms at random, so even if there are dozens of people participating, each chat room will have 5-6 people in it to make it easier to have a conversation.
The subject of the conversation? Whatever the heck we want. We could talk about pets, kids, weekend plans, significant recent events… it’s completely up in the air. One of the other five people in my room yesterday is also someone who knows about all of my recent health news, so I asked him if he thought I should mention “it” when someone asked about significant events. He didn’t care, so I told everyone that I had brain surgery 2 1/2 weeks ago.
I probably could have talked for the full half hour at that point. I explained that I had an RNS device implanted and described the general idea of what it was supposed to do. Since we were on a Zoom call, I leaned my head toward the camera on my laptop so they could see my scars. Overall, I only talked for maybe five minutes before the subject changed to people’s kids and how someone’s daughter was 10 years old and thought that the tooth fairy should give her ten bucks for each tooth.
They thought that what I told them was interesting, but no one blurted out, “Oh my God, brain surgery because you have epilepsy? How do you get out of bed every morning?” Instead, we just moved on to another interesting topic: someone was planning on traveling to London and see an Arsenal game (a soccer team that plays in the English Premier League), but he was thinking of canceling the trip because he was going to be a father soon. And by “soon,” I mean in March. “That’s plenty of time to fly to London for the game and get home!”
We’re all the main character in our own stories. The details of those stories are HUGE in our own minds. Other people? They’re the main character in their own stories and what we have to say isn’t nearly as significant to them than to ourselves. Tell people you have epilepsy and odds are good that some of them will get nervous, worried, and possibly run out of the room like their hair was on fire. I can’t speak for the odds about people who will be curious, understanding, and possibly want to provide you with comfort and support, but I can guarantee that the number is higher than zero. And then there are people who fit somewhere in the middle of those two extremes. People who don’t care about the fact that you have epilepsy and are waiting for you to finish talking so they can start telling their own story. There’s only room for one main character in their story and you ain’t it. And as long as they’re not running out of the room because you set their hair on fire, you may have a bit part and having epilepsy doesn’t change the fact that you fit into the background just fine.