First off, a confession: I started writing this post on the 13th. I’ve had plenty of time to think about what to write the last two days, but having all the time in the world doesn’t guarantee that my brain will cooperate when I’m trying to formulate a good idea. Sure, a little nugget of inspiration might pop into my head, but I may hit a proverbial brick wall or my line of thought might start heading in the wrong direction. Usually, I’ll grind it out, work with what I’ve got, but sometimes… sometimes that just won’t work. Suffice it to say that I’ve gone scorched-earth on this blog post three times so far and this is my fourth attempt. I know there’s something here worth saying, but getting from point A to point B can be a long and winding road and as a man, I think I’m morally obligated to not ask for directions.
The idea that I’ve been trying to build upon is forgiveness. But not just any forgiveness. Self-forgiveness.
That first nugget of inspiration came because at some point, I had thought about trying to write something for each day of NEAM. It seemed like a ridiculous idea initially, especially since I’d tried it several times before and might last for a few days before skipping one or two or just flaming out for the entire month. However, as I kept successfully writing blog posts days after day, it was become a realistic possibility. Maybe I can do this!
And then I reached November 13th. I had about an hour left in the day, didn’t have a really good idea to work with… then I thought that I could let it slide for a day. Intentionally. Because yes, I was starting to put a little bit of pressure on myself to get it done each day, so what happens if it doesn’t get done? Does that mean I failed, which makes me a failure?
I had started writing that the night of the 13th, then thought I could try to work on it on the morning of the 14th, but after about an hour and a half of trying to edit what I’d written, I deleted all of it. It just wasn’t working. And does that mean I failed, which makes me a failure? Then I was planning on trying to write something the night of the 14th and again the morning of the 15th, but I was never able to put together a solid narrative, something that I liked and something that made sense. Now we’re giving it another try.
So how does this relate to epilepsy? A lot of time, things are out of our hands. We might have the best of intentions, but whether it’s external circumstances or our own brains, those best of intentions don’t mean squat. Stuff happens and we have to figure out a way to work around it.
And then we get back to the failure part. During SEEG testing, I remember when the doctor was showing me pictures of objects on a screen and told me to say, “This is a [insert name of object here].” In retrospect… how stupid was it to not be able to say, “This is a clipboard”? Such a simple thing, so as we kept going and I kept being unable to identify simple things, I was getting angrier and angrier about it.
During the second round of testing when they were shooting little jolts of electricity into the electrodes in my brain, I wasn’t concerned because something was being done to me—I couldn’t say the word because of those jolts of electricity. But why was the first round of testing so much more upsetting? Does the fact that no one was zapping my brain make me a failure?
So it was a reminder to myself that could then be passed along to anyone reading this: give yourself some grace. Of course it’s simple and easy and not being able to do something simple and easy is just ridiculous. But when we have a condition like epilepsy (or any other mental or physical disability, for that matter), we don’t choose to have it. I never blew out the candles on my birthday cake one year and wished to have my brain start misfiring in ways that could make my life more difficult. It just happened that way. We accept things the way that they are, then we figure out a way to manage and keep moving forward.
I could sit down in the corner and pout. I could curl up in the fetal position with my thumb in my mouth. I could keep getting angrier and angrier until the only thing between me and a grand mal seizure is an injection of Valium into my IV. They’re all optional responses to our circumstances, though I don’t recommend any of them. Better to respond like I did after the first blackout-type seizure when I walked into the kitchen and then was walking out with a plate of eggs and toast, zero recollection of making them: “Oh, so this is a part of my life now.”
It’s hard to do. It’s extremely hard to do. But the most important thing to remember is that we very rarely decide to make our brains fire in a strange way. So whether you want to forgive yourself or forgive your brain, it amounts to the same thing. Self-forgiveness. Cut yourself some slack. Give yourself some grace. Skip writing for one day of NEAM so that the next day is even better. And if that doesn’t work… there’s always the final option of going scorched-earth and starting the blog post all over again. (I don’t recommend doing that, either.)