epilepsy Archives - Epilepsy Dad

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

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

“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.