technology Archives - Epilepsy Dad

Scars and Survival

Last summer, I was at the pool with my son.

It wasn’t that long ago that he needed to stand on his tiptoes to keep his head above the water. Now, standing over six feet tall (the tallest in our family, as he likes to tell everyone), only his waist is submerged. His skinny torso sticks up like a twig in a pond.

His body carries many markers from his life. There are scars from his adventures and falls. There are stretch marks on his lower back from his growth spurt. And there are remnants from the incisions on his chest and neck from his surgeries that implanted the two devices and the leads to his brain.

It’s hard not to notice, prominently pushing against the skin on his chest, the two implants. Against that skinny frame, with no fat or muscle to buffer them, the devices look huge. They are a permanent alteration to the contours of his body, captured on his chest like a relief map, describing the differences in elevation and the way the land rises and falls. And similar to the permanence of mountains in our lifetime, they will remain a defining part of his body’s landscape.

Of all the recorded history on his body, the implants are the hardest for me to see. The scars, even those from his surgeries, can be rationalized away as everyday occurrences of a growing child. I’ve had a scar above my eye since I was five, when I chased my sister under a glass table and forgot to duck. I’ve had a scar under my chin from when I was ten and tried to jump over a softball on my bike. And I have scars on my hands and arms from the countless times that I clumsily pulled something from the oven without protection and burned myself.

But the implants can’t be explained away as normal consequences of living. They are more than just damaged or healing skin and tissue. They are unnatural, and there is no alternative explanation to the reality that they are devices inserted into his young body to help reduce his seizures. They are visible reminders of his challenges—challenges, like the devices themselves, that he will likely carry for the rest of his life.

Seeing them, it’s easy to fixate on the implications and miss out on the significance of the moments that they enable. He’s alive. He’s having fewer seizures and has stopped a few medications. He and I were in a pool playing basketball, spending time together, and laughing. The reason he has the devices may be overwhelming, but the life they allow him to live is a medical miracle.

I still see the devices when I look at him, but I’m learning to see them differently. They don’t just mark his struggle—they also mark his survival. They are symbols of how far medicine has come, of how far he has come, and of the moments we still get to share.

A Song of His Own

“Dad, I made a song.”

That was the first thing my son said to me when I got home from work.

“That’s cool, pal!” I responded, thinking he had jotted down a few lyrics to show me.

“Do you want to hear it?” he asked.

Hear it, I thought. Interesting. “Of course!” I said, following him to his room.

I sat on the corner of his bed as he went to the computer.

“Ready?”

I nodded.

He hit play, and from his speakers came an actual rock song. Drums. Bass. Electric guitar. And a vocalist singing about the Colorado Avalanche (my son’s team) defeating the Tampa Bay Lightning (my team) in the NHL Stanley Cup Finals in 2022, the year we were in Colorado and went to a finals game. A game that, as my son constantly reminds me, the Avalanche won 7-0 on their way to hoisting the cup.

As I listened to the song, I watched the smile on my son’s face, especially when the lyrics touched on the game we attended, continued to widen—the smile of pride, connection, and love. It’s the single best sight that I will ever see.

Tampa’s thunder tried to fight,
But Colorado owned the night.

When the song finished, I stared with my jaw dangling open, which caused his smile to grow even wider.

“How?” I asked.

And he walked me through his process, prompting an AI tool with styles, themes, and concepts until he had a completed song.

“Well,” I said. “This has to be on Spotify.”

“Really?” he asked, his voice caught somewhere between disbelief and excitement.

“Really,” I confirmed. “I’ll figure out how to get it distributed so that everyone can hear it.”

For all the challenges my son has, his creativity and ability to figure things out are truly inspiring. When my wife and I were discussing her next book, my son decided to write a Fortnite Tips book, complete with an illustrated title. He gets inspired by videos of his favorite players and builds giant arenas and stadiums in Minecraft—sometimes following tutorials, other times just experimenting until it works. And now, he figured out how to make a song.

It could have been so easy for him to let obstacles define him. To look at the world through the lens of what isn’t possible. But he doesn’t. He assumes everything is possible, and then he goes and proves it. As a parent, it’s more than I could have ever wished for him.

A few weeks later, I went into his room and showed him my phone. I had the Apple Music app up and, ready to play, was the hit new song from the artist neurodefender titled “Avalanche Rising.”

We sat together and listened to it again. He gave me the same look and smile as the lyrics recounted the Avalanche victory. He grabbed his phone and pulled the song up on Spotify, replaying it for the rest of the night. When he joined his friends online, I could hear him telling them about his song, too.

And in that moment, I realized something: no matter the struggles, no matter the setbacks, my son keeps finding ways to make his voice heard. Sometimes literally. Always beautifully. And I’ll never stop listening.

Neurodefender: Video Games and Epilepsy

My first video game console was an Atari 2600 that my sister and I received for Christmas when I was eight.¹ It was magical to toggle the switchbox and have an arcade on my television screen. Within a few months, I had a collection of cartridges. Pitfall, Pac-Man, Donkey Kong. I even had that horrible E.T. game. But Space Invaders was my favorite game, and my mother’s boss and I had a friendly competition every time we visited his family.

I usually won.

As I got older, I became very interested in computers. My first computer was a Mattel (yes, that Mattel) Aquarius, one of the shortest-lived computers ever to go to market. It had a Tron game that I played constantly, even though I had never seen the movie. But it was the ability to program on the Aquarius that got me hooked and, for a long time, my world revolved around computers and my gaming followed suit.

My first online games were on a computer. That was back before there were high-powered consoles connected to the internet. I’m talking the days of dial-up modems. I would spend hours playing an air combat game with a classmate, but I was obsessed with the text-based fantasy role playing game Gemstone on GEnie, an early online service. It was a massively multiplayer online role-playing game (MMORPG) that connected people across the country in a virtual world. Eventually, I moved on to more graphical games like the World of Warcraft, but the ability to connect with other people in these worlds was life-changing and even turned into friendships in the real world. One of my groomsmen at my wedding was someone whom I had originally met in an online game.

My son developed a love for video games at an early age. We had a Wii and loved to play baseball and, especially, bowling. I have videos of him running circles around the house after getting a strike, a huge smile on his face emitting an excited giggle.

As he got older, we began to play video games together, especially sport games like hockey. We’d adjust the settings to give him an edge, and I’d occasionally have to pull my goalie and allow him to score to keep the game close, but it was a fun way to spend time together doing something that we both enjoyed.

Eventually, of course, I stopped pulling my goalie and boosting his settings because he got better. Today, he wins more games than me. The grasshopper has become the teacher. And we’ve expanded to other games. We finished the Halo series, one of my all-time favorites. We played MarioKart every night during the pandemic to get three stars on every course. Today, we play Fortnite and Rocket League together, with an occasional session of Minecraft mixed in.

But I’m not the only one he plays with. This era of powerful PCs and consoles with fast internet has opened up the world and allowed him to play with his friends. He has a friend in Connecticut who plays a baseball video game with him. And he hops on Fortnite after school to play with a few of his friends. Through them, he’s met other friends and he has a little network of gamers. Especially over the summer, it’s helped him stay connected as many families travel and it’s been harder to connect with summer schedules.

In this world of gamers streaming on platforms like Twitch, he has decided that it is the career he wants to pursue. Whether or not that is a viable path for him, it has been a great way for him to explore many aspects of a traditional career: schedules, consistency, marketing, and engagement. He learns by watching other streamers and then practices engaging with his audience, describing his actions and thought process as he navigates a challenge. He loves to teach the “noobs”² how to get started and basic tactics and tips.

As a technologist and a gamer, it’s been fascinating to see how far gaming technology has come. For my son, it’s become a way to connect, express himself, and find his place in a world that hasn’t always made that easy. Watching him game, teach, laugh, and grow through this medium is beyond anything I could have imagined.

If you want to see what he’s building—and maybe learn a thing or two yourself—you can check out his Twitch stream here: @neurodefender.

Game on.

Crazy side note, when the Atari 2600 was introduced, it cost $190, equivalent to paying $990 in 2024! ↩︎
Slang for a newbie—someone who is inexperienced or new to a particular activity, especially in gaming or online communities. ↩︎