More Than Survival

When I was young, I didn’t have a lot of support learning how to manage big emotions. When things got hard, I would go internal, like a turtle pulling itself into its shell. I’d get anxious and scared, pulling my extremities closer to my body to make myself as small as possible until the danger passed.

That was a survival skill, but while it helped me get through the danger, it didn’t address the fear and anxiety that remained. I never learned to regulate my emotions and nervous system. As a result, I spent much of my life being an anxious, introverted, scared little boy and hiding from the world.

I developed other skills to compensate. I found the courage to join the Army. After the army, I started a career, got promoted, and led teams. I got married and started a family. That’s when those compensatory skills began to fail, and I reverted to the safety of going internal, which had worked for me. Still, it didn’t work for deepening a relationship or dealing with difficult situations together.

The stress of starting a family is real, and it was terrifying to bring another life into the world and be responsible for keeping it alive. I knew I wanted to give my son a better childhood and life than I had, which felt like a huge responsibility especially considering I had no reference or idea what that meant. It was easy to do the fun stuff with him, but the stress and anxiety brought some of those survival skills back to the surface which created distance between me and my family. But we managed.

The bigger test was when we moved to Pennsylvania. We moved across the county into a new city for a new job and, within a few months, my son also began having seizures. Within that first year of moving, we spent nearly six months in the hospital trying to get his seizures under control, dealing with side effects from his medications, behavioral issues, and the fear of losing him, all in a new environment where we had no support.

Again, those survival skills that I learned as a child came back in full force. I forced my emotions down inside my shell and focused my energy on the logistics and on getting things done, rather than dealing with the fear, anxiety, shame, and despair that were trying to make their presence known.

That could be what was necessary. I needed to keep my job, maintain our insurance, put food on the table, and create a sense of normalcy in an unstable and unnatural time. While the crisis was happening, I needed that focus and detachment. But afterward, when the danger had subsided and what was left was the rebuilding of our son, that detachment became a divide, a chasm I couldn’t reach across to connect with my family.

I’ve spent a lot of time since then to cross that divide. Therapy, self-reflection, and the hard work of being present have brought me closer to my son, and I hope they have also set an example for him on how to balance survival with connection. It’s not easy, but it’s worth it because my son deserves more than just survival.

He deserves me.

Alone Together

I don’t know where you’re going, but do you have room for one more troubled soul?

That’s a line from the Fall Out Boy song Alone Together. The title itself is an oxymoron. How can someone be both alone and together at the same time?

There are a lot of ways to interpret it. Some people hear it as being about drugs. Others think it’s about two people in the same physical space, but still feeling isolated and apart.

That idea feels familiar. During the pandemic, my family and I were together in the same house, but often living separate lives. We ate in different rooms. We passed each other in the hallway with only transactional conversations. We were together, but we were also alone.

Sometimes, that distance can feel easier. It can be exhausting to be emotionally available all the time, especially when there is no break or separation. But if that becomes the norm, it’s a dangerous road. The road to ruin, as the song puts it, “and we started at the end.”

There’s another way to look at the phrase, though. You can also be physically alone from the rest of the world, but emotionally together with someone else. That’s how I often feel with my son. We are separate from much of the world—by circumstance, by hospital stays, by the realities of epilepsy—but in that separation, we are together. Us against the world. Not really alone at all.

That’s the tension at the heart of the song. It’s also the tension I feel as a parent and caregiver. Lonely, but not alone. Together, but sometimes separate. Finding connection even in isolation.

Let’s be alone together. We can stay young forever. Scream it from the top of your lungs.

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.

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