The Fog

“Do you understand?”

“Not really.”

We’ve had countless conversations with my son that all end the same way. We’ve tried repeating ourselves. We’ve tried to use smaller words. We’ve tried to use fewer words. But too many times, that process inside his brain that converts what he hears into something he understands breaks down.

It could be related to his seizures. It also probably has something to do with the handfuls of pills he swallows every day. But he lives his life surrounded by a thick fog and he struggles to find his bearings.

In conversations when we’re trying to explain something new to him, I can see a faint recognition. It’s like seeing a shape through a really thick fog. He knows there is something there, but he doesn’t know what it is.

When we talk about a memory, even a big event, he has the look of seeing the edge of something familiar that he knows he should recognize but he can’t really place what or where the object is.

In those moments when he can recall something, it’s like he is looking at something only a few feet in front of him. But then it backs away into the thick, white cloud and is lost again.

It makes me think of trying to navigate a new city that is covered by fog. You might know the general direction to start in, but haven’t yet memorized the entire route. The tops of the buildings are obscured by the fog, so you navigate by finding landmarks at ground level. Most of the references are unknown. Occasionally you’ll find one that looks slightly familiar but is unhelpful because you don’t have the context of where it sits in relation to anything else. When you find something you recognize, you get the brief satisfaction of knowing where you are. You might turn in a certain direction. But as soon as you step away from it to continue your journey, you’re lost once again.

We do our best to help him. We’re pointing out the landmarks, hoping that he’ll recognize more of them so that he can more easily know where he is. We’re getting him help so that he can develop the skills that he needs to find his way. And we’re calling out to him when he is too far away to see us so that he knows that we’re still there. But there is nothing we can do to lift the fog itself.

Inconsiderate Epilepsy

It was a few days before a big meeting that I was organizing at work. I was pulling together the leadership teams involved with a project that I am working on to talk about our progress. It was a big deal and I wore my anxiety like a jacket. Even if I wasn’t preparing for the meeting, I was thinking about it. I was stressing about it.

The meeting was on Tuesday. On the Sunday before, we were having a good day. We saw a movie. My son went to the park with a friend and I worked on my slides for the meeting. That night, though, my son started to act strangely. He was skirting boundaries. He played with an outdoor ball in the house. He started to play a little too dangerously with his foam baseball bat. I asked if he was okay and which way his brain was going and he said he was fine and that his brain was going forward, but I sensed something was off.

When it was bedtime, my wife started to get him ready and I fired up the laptop to work on my presentation. But when she asked him to clean up his toys, he started to throw a fit. It escalated quickly and before I knew it, I was sitting on the ground holding him. We tried to work on his breathing exercises and his coping skills but he was past the point of listening.

He was trying to hit us, spit on us, and calling us by our first names and saying mean things. For more than thirty minutes, I sat on the floor, holding my son, trying to comfort him. A few months ago, these episodes were happening all the time. Now, they are rare. But whether they are constant or rare, the impact of seeing your son struggle with his emotional regulation and become someone else is painful. After he finally came out of it and we put him to bed, I tried to work on my presentation, but I couldn’t. I was so shaken up.

The next day, I went to work thinking about the night before and also stressing about the meeting that was now only a day away. It’s not easy to go in the next day and tune out the night before. It’s the same when he has more seizures during the night than he normally does. I show up to work stressed and tired but try to focus on my work. I just hope it doesn’t happen on a day where I have to be “on.”

Epilepsy doesn’t care what else you have going on. Epilepsy didn’t care about my big meeting. It doesn’t care that we’re on vacation. It doesn’t care that we have plans.

My son had seizures on the baseball field. Seizures in Hawaii. At Disney world. A seizure in the pool. At school. But it’s not just seizures, it’s the overmedicated, the behavioral issues, the fatigue. Epilepsy and its entourage can show up anywhere, anytime.

When it does, you can’t send it away. Everything else gets pushed down the priority list. You have to deal with it right now.

And then, after you are done dealing with it, you figure out how to transition out of crisis mode. You go to work or you go to school and figure out how to go back to normal.

“Normal”, as if it’s a different place. But it isn’t. This is our normal.

It Can Always Get Worse

We finally got a second opinion. Not because we didn’t think the doctors at our hospital were doing everything they could. But because that’s what responsible parents do.

I wasn’t expecting a miracle. I wasn’t expecting someone to tell us we missed something that would cure my son’s epilepsy. We were looking for another perspective or treatment that we missed. We hoped that someone out there had another case like ours and could provide some insight. We wanted a little more hope. We wanted a little more of something to hold on to.

The hospital sent the report to my wife. That night, she tried to tell me what it said, but I didn’t let it in. I nodded as she spoke the words but I put my guard up and those words bounced off me and fell to the floor. For the rest of the night, I stepped over them as I distracted myself with other things until it was time to go to bed. But I didn’t sleep.

The next day, I started to feel the effects of the night before. Not only the report but how I reacted. How I tried to ignore it to make it less real. How not facing it doesn’t make it go away. And how I left my wife holding that emotional weight by herself.

When I got home from work, I hugged her and apologized for leaving her stranded. I asked her to send me the report, and I read the pages of detailed notes that the doctor had put together. It was a thorough summary of the last three years of our lives. It included confirmation that our doctors are doing the right things and that there wasn’t anything we missed. Then, towards the end, I saw what I didn’t want to see the night before.

What should we expect in the short and long term? Is there any other information you feel would be helpful for us to know?

I do worry that his clinical picture has raised suspicion for a myoclonic epilepsy that may be progressive, in which case, continued difficulty in treatment and learning decline can be seen.

It wasn’t the first time we heard that. We’re three years in without seizure freedom, and it’s feeling like a more elusive goal every day. Our doctors alluded to the possibility but kept us focused on stabilizing what we can now. The near-term goals were a welcome distraction from the long-term possibilities. But I also don’t think about it getting worse because I can’t think of anything worse than what is happening to him now.

That night I laid next to my son as I put him to bed. I told him that I loved him. That I would always be there. That I was sorry that his life was so hard. I was trying to communicate my feelings to him. But he’s eight and doesn’t understand the words we use to express those very big feelings.

Somedays, neither do I.

But I feel the need to get them out and hope that he will someday be able to understand. I worry that there will be a window between now and if things get worse where he is able to grasp the meaning in my words. I don’t want to miss that window. Even if it only cracks a little, I want to get something through. Because if things do get worse, I need to know that he will have something to hold on to.