epilepsy dad

Tag: future

  • Another Year I Didn’t Think I’d Get

    Another Year I Didn’t Think I’d Get

    Every year, my son has a birthday that I didn’t think I’d get.

    Since the age of five, he’s never gone more than a day or two without a seizure. There were times when he wouldn’t go an hour without one. And there were times when he was in status, and he wouldn’t stop seizing at all.

    The first few years were especially scary. We would spend weeks admitted to the neurology floor of the children’s hospital, watching as the medical teams fought to keep my son alive. I would wake up next to him in the middle of the night to find doctors conferring, trying to find the next medication or treatment to try. His therapists would come during the day to help his body relearn what it had forgotten how to do. Each birthday we celebrated during that time was a gift, even if the time between them was unbearably hard.

    Even after he was stable, his future was uncertain. The medications that reduced his seizures didn’t control them completely. That’s when his doctor introduced us to SUDEP (Sudden Unexplained Death in Epilepsy), and the leading risk factor is the presence of uncontrolled, generalized tonic-clonic (GTC) seizures, especially if they occur at night.

    If I didn’t sleep before, I certainly wasn’t sleeping after that conversation. We installed a camera in his room to monitor him while he slept. I woke with every sound, every movement—or when there was too much time with neither.

    Even this morning, as I was writing this post, I heard my son have a seizure in his room. It was longer than usual, so I used the VNS magnet and then his rescue medication before the seizure stopped.

    As he turns sixteen, that’s more than eleven years without sleep. Eleven years of worry. Eleven years of hoping for another year.

    And for eleven years, I have been given another year. Each one feels like a small miracle.

    The fear never really goes away, but neither does the gratitude. I still hold my breath with every seizure, but I also get to watch my son grow taller, tell jokes, and dream about what comes next.

    Sixteen years. Eleven years of worry. But also eleven years of laughter, stubbornness, love, and life.

    Every year is another year I didn’t think I’d get.

    And for that, I am endlessly thankful.

  • Neurodefender: Video Games and Epilepsy

    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. ↩︎
  • Here We Go Again

    Here We Go Again

    Here we go again
    Same old stuff again
    Marching down the avenue
    Six more weeks and we’ll be through
    I’ll be glad and so will you
    U.S. Army Marching and Running Cadence

    I was never much of a runner. I had the look of one. Tall and skinny, with long legs that should have made running easier. I was even a fast sprinter. But anything longer than the size of a football field, and my brain would scream at every one of my moving parts to stop.

    Imagine how much fun I had when I joined the army, where nearly everything involved…you guessed it…running. We’d wake up early every morning, head downstairs, and fall into formation. Our drill sergeant and his team would stand in front, bark out a few orders, and then my fellow soldiers and I would turn and follow our leaders, matching the rhythm of our steps to theirs, for however many miles we’d run that day.

    A few minutes into the run, one of the sergeants would begin calling out a cadence. Military cadences are rhythmic chants used during marches and runs to maintain a consistent pace, foster teamwork, and boost morale. They help synchronize movements, improve endurance, and build unit cohesion.

    They were magic. They kept me focused on the rhythmic call and response rather than the fact that I hated running, that my lungs and legs hurt, and that I should stop. Because I couldn’t stop. I couldn’t let my squad down. I couldn’t let myself down. I had to push through.

    One of the cadences, “Here We Go Again,” summed up basic training perfectly: the same grueling routine, day after day. Wake. Run. Eat. March. Train. Eat. March. Train. Eat. Chores. Bed. Every day, for 8 weeks, the same thing.

    Anytime I find myself repeating a pattern, especially a challenging one, I think of those early morning runs. I think of that need to push through, to not let my squad and myself down.

    Here we go again
    Same old stuff again

    We’re approaching one of those times. Toward the end of the school year, our son is always exhausted. He’ll have a harder time waking up in the morning and randomly fall asleep in the afternoon. Around the same time, baseball, one of the few non-school activities he still enjoys, starts demanding more energy and mental bandwidth. We also start figuring out what the following school year will look like, scheduling IEP meetings, and talking with his school and the district about our son’s challenges, needs, and potential. It’s mentally, physically, and emotionally draining on the entire family.

    Six more weeks and we’ll be through.

    Six more weeks until the school year ends. Six more weeks to push through. Six more weeks of having a routine, structure, and certainty. Six more weeks until the story that has been written ends, and there are only blank pages unless we can write down a new plan before then.

    It’s exhausting. It’s like those basic training marathon runs, where somehow we’d run in a circle but only be running uphill, defying physics, logic, and any sense of fairness. It tests our endurance and commitment. Parts of my brain are screaming to just stop.

    But we can’t stop. We can’t let our son down. We can’t let ourselves down. We have to keep going. We have to fill those pages with a plan for the next year, until we find ourselves again six weeks from the end of the school year with the same cadence echoing in my head.

    Here we go again.

    Same old stuff again.

  • Bit of Both

    Bit of Both

    There’s this great line from the Marvel Guardians of the Galaxy movie where one of the characters asks his team what they should do next.

     Peter Quill: What should we do next? Something good? Something bad? A bit of both?

    Gamora: We’ll follow your lead, Star-Lord.

    Peter Quill: Bit of both.

    At a recent appointment with our neurologist, we were giving her an update on our son’s quality of life. As I listed the highs and lows, that line from the movie popped into my head because it perfectly captures where we are on our journey with epilepsy.

    For so long, it felt like we were chasing a single definition of “better.” Fewer seizures. Better focus. More sleep. But over time, I’ve learned that progress rarely shows up in a straight line. It comes in fragments stitched between setbacks.

    Even with the medication changes, VNS, and DBS, our son still has seizures most days. But they’re mostly when he sleeps and hasn’t had a daytime seizure in a long time. The seizures affect his sleep and rest, and he’s tired a lot. But we’ve been able to manage his exhaustion and prevent it from escalating and increasing his seizures.

    Because of his morning seizures, he often goes to school later, but he makes it through the day. He still struggles with his memory and executive functioning, but he is able to complete tasks and problem-solve. He’s behind socially, but he has a best friend. When we thought we should only expect regression in his cognitive abilities, we saw progress in math and other subjects.

    When the neurologist did the “finger-to-nose” test to assess his upper body movement and coordination, she observed some tremors and dysmetria. But he also plays baseball and can hit a fastball and throw a pitch. His reaction time is slow, but his coaches adapt their style to help him contribute. The team consists mainly of neurotypical teens who go to school together and socialize outside of baseball, but they treat my son kindly. This season, the coach even drafted his best friend onto the team.

    Last week, I wrote about embracing the bittersweet. Moments are never just one thing, and I sometimes struggle to find the good in bad ones, but I look for the bad when the moment is good.

    In the middle of sadness, there is love. In struggle, there is strength. In the hardest days, there is light.

    Life isn’t one thing, either. It’s a collection of moments and experiences stitched together over time. It’s natural to apply the same pessimistic lens to the collection as to each individual moment and get stuck in the pattern of only seeing the negative. But in life, just as it is with each moment, it’s important to see both.

    Maybe I won’t always find it right away. Maybe some days the sorrow will feel heavier than the joy. But if I can hold space for both, if I can remember that they live side by side, then maybe I can stay a little closer to hope.

    Maybe I won’t always recognize it immediately. Some days, the bad will feel bigger than the good. But if I can step back, hold space for both, and remember that neither tells the whole story on its own, I can keep moving forward.

    Holding space might mean celebrating a hit in baseball even if the rest of the day was hard, or letting my son’s laugh take up the room without immediately wondering how long it will last. It’s giving each part its due without rushing past the good or getting swallowed by the bad.

    That’s not just something to look forward to — it’s something to hold onto.

    So, what comes next? Something good? Something bad?

    Bit of both.

  • The Other AI: Autonomy and Influence

    The Other AI: Autonomy and Influence

    My son has been asking more frequently about living by himself. We’ll have a talk about independence and responsibility, and loosely talk about goals to help him move in that direction. But I also watch as he struggles to remember whether he had taken his medication, or put on deodorant, or pull his sheets up when he makes his bed.

    As I watched him try to piece it together, I thought about the technology that I work with and whether it could help him.

    I’ve been involved with computers and technology for most of my life, building products with bits and bytes of code and data. For the past ten years, I’ve worked in the evolving field of artificial intelligence (AI).

    I recognized early on that AI could potentially transform my son’s life. As the technology matured, I watched it advance the state of medicine and healthcare.

    Today, AI algorithms power diagnostic tools, accelerating the time to detect, identify, and treat complex medical conditions. AI is accelerating drug discovery, helping researchers identify promising treatments faster than ever before. It is also being used to examine genetic data to identify the right medication and dosage for individual patients.

    AI could improve his quality of life in ways that weren’t possible only a few years ago. Pattern recognition can alert us when he misses a medication or a meal. Personal assistants can provide reminders, keep him on task, and communicate with him in a way that he understands. Self-driving cars will give him mobility and access to a wider world. AI-driven tools can assist him with complex tasks, help him communicate ideas, and give him greater autonomy and independence.

    That’s the promise and the potential.

    But here’s the problem. We live in a world where AI is already causing harm.

    Inherent challenges with the technology, especially with generative AI (e.g., ChatGPT), result in hallucinations where the algorithm makes things up. The black-box nature of these algorithms makes them unpredictable and impossible to test fully, resulting in harmful behavior. And these algorithms are owned by corporations who control the data, usage, and output and can tune it to fit their agenda.

    Beyond technology, people have been using these tools for nefarious purposes. It’s easy to create a false but believable story and share it on social media. It’s also easy to create completely believable but fake images and videos to mislead viewers. These bad actors are using the technology to push false narratives and generate mistrust and dissent in society.

    My son struggles with memory and executive functioning. It impacts his ability to reason and determine whether what he is reading is fact or opinion, truth or lies. While I think society at large has lost its ability to thing critically, people like my son are especially susceptible to these false narratives and the harm they can cause.

    So while I’m building the future with AI, I’m also guarding the present for my son. I want him to have access to all the promise this technology offers — the support, the independence, the chance to live on his own — without falling victim to its dangers. I have to be his guide, his filter, and his advocate.

    Because while AI might one day help him remember his medication or build a career, it won’t teach him who to trust, what’s real, or what truly matters. It’s my job to walk beside him, protect him, and help him make sense of a world that’s changing faster than any of us can keep up with.