memory Archives - Epilepsy Dad

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.

A Childhood In The Clouds

I wonder how my son is going to remember his childhood. Sometimes, I wonder if he is going to remember it.

My son and I watched a Philadelphia Eagles game and we saw a player that my son had met at the hospital. I asked if he remembered meeting him and he said that he didn’t. We met the player almost two years, so at first, I chalked it up to my son being too young to remember. But he was also in the hospital because he was having more seizures and because we needed to adjust his medication.

Like other medicines, epilepsy medications have a long list of side effects. But medicine that controls seizures targets the source of those seizures, the brain. As a result, the side effects show up in those areas that the brain controls, which is everywhere. We have sees these side effects alter his mood and behavior and impact his motor control. As he gets older, we’re also seeing how much they affect his ability to learn and his memory. Those side effects were likely there all along, hidden beneath the surface. But now that those skills are being tested, the latent effects are being revealed.

We’ve passed the three year mark of my son taking medicine for his seizures. Three years of my son’s brain in a constant fog. Three years of struggling to form solid shapes around thoughts and ideas. Three years of a childhood spent in the clouds.

Three years of exerting all his energy to focus on one task at a time. Three years of that focus sapping all his energy. Three years of wondering if there is enough energy or will left inside of him to enjoy an experience.

The more we explore, the more gaps we find. Milestone events never happened. People erased from existence. It’s impossible to tell whether the failure is storing the memory or recalling it. The result is the same, though. A void where a childhood should be.

My wife and I repeat stories of our adventures to him, and we show him the albums of pictures we’ve taken. I’m hoping by continuing to expose him to those memories that he will have something to remember. I don’t know if it will be because we’re unlocking old memories or creating new ones through our stories. I’m hoping his brain doesn’t know the difference. I’m hoping that when he looks back on this time in his life, he’ll have something to find.

Cornerstone

I’m a big fan of the show Westworld. Robots and cowboys. Oh, and Anthony Hopkins. What’s not to like?

Westworld is an HBO show about the dawn of artificial consciousness. Credit: HBO — *Westworld* is an HBO show about the dawn of artificial consciousness. Credit: HBO

In one episode, the characters introduce the concept of a “cornerstone memory”. In architecture, a cornerstone or foundational stone is the first stone set in the construction of a foundation. All other stones will be set in reference to the cornerstone and it will determine the position of the entire building. For the robots in Westworld, the cornerstone memory is the one that their entire identity is built around. These memories define the robot’s central story and tether their thoughts and actions to a core motivation or theme.

The humans in the show have cornerstone memories, too, just as we do in real life. These memories stir up the feelings associated with them as if the moment just happened and dictate how we respond to the world. We use these memories to remind ourselves who and what we are.

I keep going back to my son’s first seizure, feeling the fear and the sadness that I first felt watching his body tighten and his head turn to the side. I lose my breath as I remember him being unresponsive as I desperately tried to wrestle him from his seizure, the panic I felt, the helplessness. I can’t bear to stay in that memory too long.

That memory drives my present day actions and motivations. It is why I write this blog. It’s why I signed up for the marathon. The helplessness I felt in that moment and the realization that I felt lost is why I sought help to cope with the complex emotions and challenges that lie ahead. It’s why I committed to becoming a better father and a better husband, to provide for my son and my family, and why I work so hard to give them a good life.

As painful as that memory is, I try to be grateful that I have it because of how much my life has changed for the better because of it. I don’t know that a less painful memory could have had such a profound impact on how I live my life. As much as I wish my son wouldn’t have to go through any of this, I’m not sure that any other path our life could have taken would have brought us all as close as we are and I don’t want to take what we have for granted.

In Westworld, the cornerstone memory is the one story that the robot’s entire identity is based on. It’s used to keep them on a predefined narrative. If they try to imagine a future that varies from their path, the memory pulls them back to keep them within the bounds of the set story. I find myself doing the same sometimes when I try to imagine a future for my son. The memory of that first seizure tries to limit those possible futures that I can see and it takes everything I have to fight its gravity.

But life is not about one story, it’s made up of hundreds. Thousands. The memory of my son’s first seizure is one of my stories, but it’s not the only one. It has influenced my life, but so have the other memories that I carry with me. My life doesn’t have one cornerstone. It has many, creating an infinite number of buildings in complicated shapes that are still being built.

The memory of my son’s first seizure is a cornerstone, not the cornerstone. It has shaped my life in many ways but it, alone, does not determine my future. Or his. Our experiences change us by they do not control us. We are human, with unlimited potential and countless unwritten futures. We should embrace that, and we should create a future that celebrates that potential.