epilepsy dad

  • The Water Level: Disability and Technology

    The Water Level: Disability and Technology

    When driving comes up, I tense.

    It doesn’t happen every time, but when we’re with other families and someone mentions permits or practice drives or the freedom of having a new driver in the house, something tightens in me. I watch my son. He doesn’t say anything. He just goes quiet and waits for the conversation to move somewhere else. I usually help it along.

    I don’t know exactly what he’s thinking in those moments. I don’t ask. Maybe it’s nothing. Maybe it’s everything. But I was in that exam room when his neurologist answered his question about driving, and I know what “probably not” sounds like when it lands.

    His friends are getting permits. He’s watching that happen from the outside, the way he watches a lot of things.

    I think about his future more than I let on to him. I think about medications they haven’t discovered yet. Therapies. Devices. I think about his independence — what it might look like, what it might require. Autonomous vehicles have been part of that thought for a while. Not as a certainty, just as a possibility worth holding onto. So when I came across a podcast recently about autonomous vehicles and what they might mean for people who can’t drive, I expected something that confirmed what I’d been quietly hoping. Instead it pulled in two directions at once.

    The first part was about job displacement — the ways AI is already eliminating work, particularly at the lower end. Automation moving through the kinds of jobs that don’t require a degree or specialized training. The ones with structure and repetition. Then the second half shifted to autonomous vehicles and the disabled community. The argument was straightforward: people who can’t drive because of a medical condition, a physical limitation, age — autonomous vehicles could give them something they don’t currently have. Independence. The ability to get somewhere on their own.

    And then someone in the episode pointed out that the disabled community was being used to make the case for technology that primarily serves other interests. That the promise of accessibility was real but also convenient. I don’t know where the truth lands on that. Probably somewhere uncomfortable.

    My son is sixteen. He wants to be a hockey player or a streamer. Neither is straightforward. Hockey as a player isn’t realistic, though being involved in the sport in some other way might be possible someday. Streaming is something he genuinely enjoys, but it requires consistency, memory, sequencing — things that are hard for him right now, harder than they look from the outside. He has dreams the way any teenager has dreams. He just has more walls. And the jobs most likely to be within reach for him — the ones with structure, repetition, and the right support in place — are the same ones that automation is already eliminating.

    I’ve worked in AI for more than a decade. I use it every day. The work it’s making easier is white collar work — the kind that requires education, executive function, the ability to synthesize and decide. The jobs it’s eliminating are the ones that could work for him.

    The water level keeps rising. He’s already underwater.

    That’s the part I can’t think my way out of. Autonomous vehicles might eventually give him a way to get to a job on his own. That would matter. That would be real. But if the job itself has been replaced by the time the technology arrives, the independence doesn’t have anywhere to go.

    I don’t know how to hold both of those things. I’m not sure I’m supposed to yet.

    What I keep coming back to is that exam room. His neurologist exhaled before she answered. My son sat there and took it without flinching. Part of him probably already knew. Part of him was hoping for a different answer.

    He’s been doing that his whole life — absorbing the gap between what other kids have and what’s available to him. Sitting quietly while the conversation moves on. Waiting.

    I don’t know what the world looks like when he’s thirty. I don’t know which promises will have been kept and which ones will have turned out to be convenient. I don’t know if the door that technology seems to be opening will still be open, or what will be on the other side of it if it is.

    I just know he’s sitting with questions he shouldn’t have to sit with at sixteen.

    And I know what it looks like when he goes quiet.

    I also wrote about this topic from a different angle on davidmonnerat.com, where I explore the structural side of the question — who technology is built for, who it displaces, and why those two groups are often the same people. You can read that piece here: The Other Hand: AI, Disability, and the Cost of Progress.

  • A Step Back From the Edge

    A Step Back From the Edge

    I used to feel like I was already over the edge.

    Not standing near it. Not testing it. Over it.

    There were stretches where it felt like I was constantly catching myself mid-fall. Managing medications. Managing schedules. Managing finances. And at the same time, bracing for volatility. Wondering what I was walking into at the end of the day — whether it would be a call from school, a number on a bill, or a silence that meant something had already shifted.

    It wasn’t dramatic in the moment. It was just normal. That’s what makes it harder to recognize in hindsight. I was in freefall and calling it responsibility.

    My son still had seizures. My goddaughter still struggled. Work still pressed. But layered over all of it was instability. The kind that keeps your nervous system activated even when nothing specific is happening. The kind that makes you feel like collapse is always a few inches away.

    I hate heights.

    If I look over the side of a building, my body reacts before my mind does. There’s a queasy suspension. A sense that gravity is closer than it should be. That feeling used to live in my chest most days. Not because catastrophe was constant, but because it was always possible.

    The edge is still there.

    My son still has seizures. A cold still increases risk. My goddaughter is still medically fragile. Work is still work. The debt is still heavy.

    But I’m not over it anymore.

    I’m a step or two back.

    I can see the drop. I don’t like it. I don’t pretend it isn’t there. But I’m standing on solid ground. The weight I’m carrying feels steadier. It doesn’t swing the way it used to.

    That’s the difference.

    The risk hasn’t vanished. The responsibility hasn’t lessened. The uncertainty hasn’t resolved.

    What’s changed is the footing.

    I’m not bracing for the next shove. I’m not scanning every moment for signs of collapse. I’m not ending each day with the sense that I barely made it through.

    I’m standing.

    Close enough to respect the edge. Far enough back to move deliberately.

    The edge isn’t gone.

    But I’m not falling anymore.

  • No Extra

    No Extra

    There’s no extra right now.

    Not extra money. Not extra time. Not extra energy. The margins are narrow. The system runs because it has to.

    Sunday mornings are for medication.

    I make coffee. I put on a podcast or an audiobook. I stand at the kitchen island and start with mine. A few supplements come out first so they can go into my son’s pills later. Mine go straight into the organizer. His get laid out on a paper towel, seven days in a row, then transferred into the plastic containers. When they’re finished, Sunday goes on top.

    I take my pills. I set both containers on top of the coffee machine for when he wakes up. The dogs are usually on the couch, half-watching. They know the routine.

    Every morning I swap the containers. I take mine. I put them back. It’s mechanical. Quiet. Just part of the structure.

    Everything goes in the calendar now. Appointments. School events. Guitar lessons. Therapy. Tennis. If it isn’t there, it doesn’t exist. The to-do list is long, but it turns over. Things come off. New things go on. Nothing flashy, but nothing slipping.

    The house is tidy. The clothes are clean. The dogs get walked, even when it’s freezing. They get groomed. My son and I get haircuts regularly. It might look like a small luxury from the outside, but it feels more like maintenance. A way of saying we’re still taking care of what’s ours.

    There’s no extra, but there’s enough.

    We’re not adding new things. Guitar and tennis stay for now, but they’re the first to go if something else demands attention. I don’t feel deprived. What we have feels deliberate. Contained.

    The debt is heavy. The future has large shapes in it. I want clarity. I want the numbers to go down. I want more margin. But the day-to-day isn’t falling apart.

    That’s new.

    Control feels quiet. It isn’t about power. It’s about not bracing. It’s about knowing that if something goes wrong, it’s a problem to solve.

    I’ve been doing this job longer than the title suggests. Now there’s no one else to absorb it. Income. Meds. Schedules. Appointments. A cold this weekend. Likely more seizures. That’s just the math. I’ll adjust. I’ll keep going.

    The system holds.

    It isn’t elegant. It isn’t abundant. But it’s ordered. Maintained.

    There’s no extra right now.

    There’s what must get done. There’s what keeps us steady.

    For now, that’s enough.

  • The Long Middle

    The Long Middle

    The old version of me would still call this a crisis.

    There was a time when this much responsibility, this much uncertainty, this many variables would have felt like an emergency. Therapy, time, and experience have changed that. I don’t react the same way anymore. I don’t spiral at every shift.

    But that doesn’t mean it feels light.

    Everything is on me now. Income. Care. Medications. Schedules. Appointments. If my son catches a cold, I already know what that usually means. Colds often mean more seizures. That’s just a fact. I can’t change it. I won’t panic when it happens. I won’t treat it like a catastrophe.

    But I still have to carry it.

    The structure of my day hasn’t changed much. That’s part of what makes this the middle. Morning follows night. Work follows the morning routine and school drop-off. Pickup follows work. Dinner follows pickup. Bedtime follows dinner. Then it starts again.

    Each segment feels like a middle. The morning is between the night and the workday. The workday is between drop-off and pickup. The evening is between dinner and sleep. It’s like a loop that keeps folding back on itself. Nothing climactic. Nothing final. Just continuation.

    The worst version of events hasn’t come to pass.

    The things I used to brace for haven’t arrived.

    But nothing has resolved either.

    There are still things in motion. Still decisions that aren’t finished. Still outcomes I can’t control yet. I can see that an official “new life” is approaching, but even that feels like another middle. I’m not there yet. I’m here.

    Here looks like waking up, working out, showering, making breakfast, and packing lunches. It looks like responding to seizures while my son sleeps in late, postictal. It looks like getting him ready for school, dropping him off, going to work, leaving early to pick him up, and finishing work at home. Walking the dogs. Chores. Hoping for a game of Fortnite together before dinner. Cleanup. Bedtime routine. Repeat.

    It’s not dramatic. It’s not cinematic. It’s routine.

    And maybe that’s what the long middle really is.

    Not the beginning. Not the breakthrough. Not the clean ending. Just the steady stretch where responsibility becomes ordinary. Where weight doesn’t disappear, but it becomes familiar enough that you stop naming it every hour.

    The house is quieter now. Less chaotic. There’s space where noise used to be. That space isn’t exactly peaceful, but it isn’t volatile either. It just is.

    I don’t know what the future version of this life will look like. I know there are changes coming. I know certain realities are solidifying. But today is not about that.

    Today is about the loop. About carrying what needs carrying. About not treating endurance like emergency.

    The long middle isn’t dramatic.

    It’s repetitive. It’s responsible. It’s unfinished.

    And for now, it’s just the way it is.

  • Still a Hockey Player

    Still a Hockey Player

    My son wants to be a hockey player again.

    Actually, he’s wanted to be a hockey player for most of his life.

    Hockey has always been part of his identity. He had a hockey stick in his hands as soon as he could stand. He left the hospital with an NHL toque on his head. One of my earliest memories of him is lying on a couch in a hospital room a day or two after he was born, him asleep on my chest, a hockey game on the television.

    Before the seizures.

    Before we knew what was coming.

    When he was little, we played hockey in the living room with miniature sticks and a foam ball. We took turns as players and goalies. We went to an outdoor rink near our house with sticks and a ball and played one on one.

    One time, there were other people there—teenagers, I think. One of them was a goalie. He let my son take shots on him. Let a few go in. My son was three or four. This was still Colorado. Still before everything changed.

    He started skating when he was two. He joined “Intro to Hockey” when he was about four. Right before we moved to Pennsylvania. Right before the seizures started.

    Right before we knew what we were carrying forward.

    Once his seizures were somewhat under control—though never eliminated—we tried again. We went back to skating. We worked on stick handling off the ice. But even that eventually became too much. Then COVID hit, and everything stopped.

    When we moved to the suburbs and the world slowly opened back up, we tried skating lessons again. But they were exhausting for him. His ankle strength wasn’t there. His stamina wasn’t there.

    Eventually, we stopped.

    But hockey never really went away.

    A few years ago, he brought up the idea of being in the NHL. We talked about how it wasn’t something he could safely pursue. With his health challenges and the fact that he still has seizures, the risks of hockey make it unsafe.

    We tried to name other ways hockey could still be part of his life. Other ways to love the game and stay close to it.

    We watch hockey. He loves his Avalanche. We went to an NHL Finals game—his Avalanche versus my Tampa Bay Lightning. The Avalanche won 7–0 and went on to win the Stanley Cup.

    Two facts my son reminds me of constantly.

    A few weeks ago, he told me he’s been practicing hockey every day. Because that’s one of the things we always talk about when people eventually make it to the NHL—how much work they put in before anyone noticed.

    He asked me whether he should be a player or a goalie.

    He’s been wearing his Avalanche jersey again. Drawing players. Talking about teams. He understands that he might not get to choose which team signs him.

    Now I have to talk to him again.

    That’s the hard part. Not the safety. Not the medical reality. The sense that something meaningful may be slipping out of reach.

    I ask myself whether I’m wrong for not letting him live in the fantasy of it. Whether I should just let it sit there, untouched.

    But he’s sixteen. And I don’t want him chasing something that can’t hold him safely. I want him chasing something that asks a lot of him. Something that’s still hard. Something that still matters. But something that’s possible.

    Working toward an NHL career isn’t something he can do safely. But there may be other ways for hockey to remain part of his life. Other paths that keep the game close.

    I don’t need those paths to replace his dream. I just need them to exist.

    This isn’t a conversation I can rush. Or solve. Or make painless. It’s something I have to sit with him in, and return to as he grows and changes.

    I know I’m not the one who set these limits. I know where they come from.

    All I can do is stay with him as he bumps up against them, and not look away.

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I’m Dave. I write about raising a son with refractory epilepsy.
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