epilepsy dad

Tag: fatherhood

  • 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.

  • Going Back

    Going Back

    Last week, we traveled back to Connecticut to bury my father.

    He passed in Pennsylvania, but he wanted to be buried in the city where he grew up, in a plot next to his mother, father, and aunt. Even though he moved away, it would always be his home.

    The cemetery was old, older than the incorporation of the city, but nearly 150 years after the founding of the town. Its residents include authors, architects, and brass industrialists who helped the town maintain its nearly 100-year run as the brass capital of the world. It sits along a small river on the side of a hill looking down on the city that those same residents helped create.

    It was the same city where I was born in what seemed like five lifetimes ago.

    After the service, where my aunts, uncles, and cousins were all together for the first time since my grandmother’s death 15 years ago, my wife, son, mother, and I drove through the city to see what has become of it.

    We saw the hospital where I was born, sitting in between two highways but not looking any worse for wear.

    We saw the first apartment I remember, with the big, green boulder still as green but much smaller than it seemed when I was a child. Next to the apartment was a stream my friends and I would fish in during the summer and the hill we would sled down in the winter, having to bail from our sleds before we reached the same stream.

    We passed the Catholic church and school that I attended through elementary school. The parking between the two was our playground and the site of my longest paper airplane flight—the two buildings themselves were the source of years of trauma.

    We drove by City Hall, where my mother worked. I would spend afternoons there practicing crafting the record-setting paper airplanes I learned to make from my mother’s boss and test them down the long, empty hallways after the city’s business was done for the day. My mother and father met while working for the city.

    We saw the house my mother purchased through a special government program that has since been converted into apartments. It was the house we were in when my parents married and where I had many formative experiences and memories. It’s where I would lock myself in my room and learn to write code.

    The streets and abandoned factories are where my friends and I hung out. The corner store where I used to play video games and pool while waiting for the school bus, and then had to race the bus to the other side of the block to catch it (I didn’t always). The nearby park is where we played baseball, where I broke my wrist trying to ride my bicycle down a hill meant for sledding, and where we would sneak under the highway to find the perfect fishing spot.

    We stayed in that house until I was a teenager, when my father retired, and we moved to Florida to begin another life. After we left, with only one exception, I’ve only been back to the city of my birth for funerals.

    As we drove through these memories, my mother commented on how different the city looked. It was tired and faded, and the gray, overcast sky made it feel even more tired and faded. But it looked exactly like I remembered. It was a city years removed from its glory that could never find itself again.

    It’s the place I was born. It’s where I lived, where so much of who I am was formed, and where so much of what I have spent my life trying to overcome was done. The places and the stories I shared with my son were glimpses into a complicated childhood filled with conflicting memories, thoughts, and feelings. It’s a very different childhood than my wife and I created for our son.

    The city hadn’t changed much, but I had.

    The time we spent there only felt like going back.

    It didn’t feel like going home.

  • Uncertainty, Fear, and Hope

    Uncertainty, Fear, and Hope

    “It’s not the unknown itself that paralyzes us—it’s our fear of what it might hold.” – Unknown

    In life, there is always uncertainty.

    Will my car start? Will there be traffic? Will I make it in time?

    Is this milk bad? What will happen if I drink it anyway?

    Most of the time, we aren’t aware of how much uncertainty there is. We focus on the present moment and the task at hand. Our awareness and perception are constrained to what is in front of us.

    That’s a good thing. It would be terrifying if we were constantly aware of just how much uncertainty there is. We’d be paralyzed by fear—fear of the unknown, of what the future might hold, and of how little control we truly have.

    “When everything is uncertain, we crave control. But clinging to certainty can keep us from growing.” – Unknown

    Sometimes, though, uncertainty is impossible to ignore. Sometimes, it compounds until it becomes big enough to have a gravity of its own. And sometimes, it collapses on itself like a black hole that consumes every other thought.

    Uncertainty about my son’s future. Uncertainty about my career. Uncertainty about the health of a loved one. Financial uncertainty. Relationship uncertainty. Each can be daunting by itself and occupy my thoughts. But, together, there can be nothing else. No other thought can escape.

    When uncertainty dominates our thoughts, it can be overwhelming. In these moments, it’s easy to focus on the negative, like the discomfort of not knowing and the worst-case scenarios that could unfold.

    I’ve always tended to wait for the other shoe to drop, focusing on the rare moments when it does rather than the many times it doesn’t. This pattern is known as negativity bias—the tendency to give more weight to negative experiences than to positive or neutral ones. Even when good outcomes are more common, the few bad ones loom larger in my mind, especially during times of uncertainty, when the unknown consumes my thoughts.

    It’s hard to remember that uncertainty isn’t always a bad thing because it’s difficult to imagine positive outcomes when all you see is the unknown.

    Uncertainty is the refuge of hope.— Henri Frederic Amiel

    I like this quote because it shifts perspective. While uncertainty can be unsettling, it also allows space for hope. The unknown holds the potential for something better, new opportunities, healing, and change.

    I try to remind myself of this when fear takes hold. When everything feels uncertain, there is still room for hope. And sometimes, hope is enough to keep moving forward.

  • The Real World

    The Real World

    This is the true story…of seven strangers…picked to live in a house…(work together) and have their lives taped…to find out what happens…when people stop being polite…and start getting real…The Real World.

    Around the time I graduated high school, MTV launched a show called The Real World. The first season followed seven young adults living together in a New York City loft, documenting their interactions, conflicts, and discussions about race and identity. It was marketed as an unscripted glimpse into young adulthood, but in reality, The Real World was anything but real. The show was heavily edited, and its cast was carefully selected to generate conflict and drama. The environment was artificial—a manufactured version of adulthood designed for entertainment rather than truth.

    Lately, I’ve been thinking about that contrast between reality and expectation as we navigate our own version of The Real World—helping our son transition into adulthood. We’re working with a transition counselor to understand his path forward, and it’s forcing us to confront some hard realities about his future.

    This process has resurfaced unanswerable questions and concerns about how much support our son would need to get through his daily life. Will he remember to take his medication? Does he know when to do laundry? Will he remember to turn the stove off? Would he be able to finish chores and tasks without getting distracted?

    The scripted version of adulthood—the one where you turn 18, go to college or get a job, and move into your own place—isn’t the one we’re working with. Instead, we’re piecing together a different kind of future shaped by his abilities, challenges, and the resources available to help him live as independently as possible.

    The good news is that there are benefits and programs designed to support people like him. However imperfect, there are systems in place that can help him build a life. A life where he can find his own sense of independence, identity, and path.

    The bad news is that these systems and benefits are the same ones under attack by the current administration. Social Security, Medicare, Medicaid, the Department of Education, and support for non-profits are all in danger of being eliminated or losing some or all of their funding. The uncertainty of the future of these vital support programs directly correlates with the uncertainty I feel about my son’s future.

    Ultimately, this is the real world that I am thinking about. Not the one made for television, but the one that exists where there are no cameras. A world that is not made for people like him. A world where, one day, he’ll have to live without us, whether those support systems exist or not. What that world looks like and what his quality of life will be in that world is what we are fighting for.

    It’s not scripted.

    It’s not edited for drama.

    It’s just real.

  • Who I Am Meant to Be

    Who I Am Meant to Be

    Life’s challenges are not supposed to paralyze you, they’re supposed to help you discover who you are.

    Bernice Johnson Reagon

    When my son started having seizures, I was paralyzed. I was afraid. I was helpless. I was there physically but didn’t know how to be emotionally present for him or my wife. I had disassociated from the situation, leaning into my job and the mechanics of keeping a household running. My wife became the full-time caregiver in a new city without any family to support her through my son’s most challenging times medically, intellectually, and emotionally.

    After years of therapy, I still struggle with the semantic debate about whether to say I was afraid or I felt afraid. But looking back, I think I was both because while those words described how I was feeling, they also described my actions. And inactions.

    It was an impossible time, and I committed to doing better. Over the years, I became a better partner and father, but I had a lot of work to do to repair the damage those years did to the relationships in my life.

    A few years ago, my wife had health challenges that limited her capacity for physical activity. Rather than distancing myself from the situation, I tried to lean in. In addition to going to work, I took on most of the responsibilities around the house. I thought showing her I could care for her would be enough. But the same lack of emotional connection persisted. She was cared for but wasn’t receiving what she needed and deserved most.

    Being the parent of a child with special needs is challenging enough. Coming into the situation with trauma and fears makes the situation infinitely more complex, dangerous, and demanding. I know families who have been ripped apart by it. I also know families who have become stronger, and I wanted to be one of those families.

    Rather than paralyzing me, I want these challenges to help me discover who I can be. I want to be the type of person who can show up and be present. I want to be a person who can be vulnerable when the vulnerability is needed. I want to be the type of person who makes a person feel seen who is struggling, or in pain, or needs to feel seen. I want to be the type of person who isn’t afraid to be seen.

    I still have moments of doubt, of fear, of wanting to retreat into old patterns. But each time, I remind myself that being present, vulnerable, and truly showing up is a choice. And every time I make that choice, I get closer to the person I want to be.