Not Made From Concentrate

One of the biggest problems I have living with epilepsy is not my seizures. It’s the various mental issues that come with it.

I don’t mean depression, or autism. Those are strongly associated with epilepsy, but there are other problems as well. I want to tell you today about the problems I have with attention and concentration.

I have epilepsy mainly because my brain isn’t structured the way it should be. The are damaged parts, missing parts, parts in the wrong place. Some of the places affected are the brain areas that control my ability to focus on a task, remember what I’m doing, and figure out the best way to get it done.

That means that when I’m in the middle of doing something important, I’ll forget what I’m supposed to be doing, and often switch to a task completely unrelated. So my wife, maybe, will ask me to get her a glass of water. For most people, here’s how that would go:

  • Get up off the couch and walk to the kitchen.
  • Get a glass and fill it with water.
  • Walk back and hand it to wife.

Here’s what happens with me:

  • Get up off the couch and walk to the kitchen.
  • Why am I here?
  • You know what, the counter looks dirty, I should clean it.
  • *clean clean clean* oh there’s my phone. I wonder if anyone answered my latest tweet?
  • *scroll through Twitter* hm. This sounds interesting, I should answer it.
  • 5 minutes later: “Hey Matt? Where’s my glass of water?”

Now, I’ve had people tell me, “Oh, don’t worry about it. That happens to me to, sometimes. It happens to everyone occasionally.” These people don’t understand. This is not “occasionally” or “sometimes”. This is pretty mch every waking minute of my day. It’s never not there.

A woman at a desk. Surrounding her are images like cats, computer screens, and other things representing distracting thoughts.
Yes, this is me. All the time.

It’s really really frustrating. It’s not just that I don’t pay attention. I might be able to fix that. But I literally can’t, and I can’t fix it.

There are a couple of things I can do, though. Here’s what I’ve done:

Talking to myself

This is probably the weirdest for other people to encounter. But I find that if I narrate what I’m supposed to be doing, I can keep track of it. I listen to the words and they tell me what to do. “I need to get a glass of water. Let me get the glass. Now I’ll fill it with water. Now let me bring it back to my wife.” It’s probably strange, even unsettling, for other people. But it really does work.

Sticky notes

These are for long term reminders: “Before making dinner, put away laundry.” I’ve driven my wife crazy putting these all over the place. Sometimes they work, sometimes not. But it’s always worth trying. The more reminders, the better.

Cell phone alarms and reminders

For a guy who works with computers for a living, I’m surprisingly not crazy about technology. I hate carrying my phone with me all the time. I really do. But it’s great to set reminders, alarms, timers – they don’t help me focus as such, but they get me back on track when I have something to do.

Task list / bullet journal

I have online task organizing websites, as well as a paper and pen bullet journal. I really recommend both of these for long term reminders (and for me, “long term” means 12 hours or more). You can find lots of information about bullet journals online; I’m not going to go into right now. And the (free) online organizer I use is Trello. Again, I can’t recommend that enough.

So that helps me with the actual organizing and focus problems. As far as the frustration? Breathing helps. Praying helps. And just stopping to remember that some things are beyond my control, and I can work with them, or let them control me. You can guess which one I try and do.

Stay strong. And own your epilepsy.

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