epilepsy dad

Tag: life

  • The Perfect Storm

    The Perfect Storm

    My wife pulled up a picture of me from a year ago on her phone. At least, I think it was me. The face in the picture had the same thinning hair and the same gray beard, except it was wrapped around a much rounder face. I recognized the shirt that person was wearing because I had the same one hanging in my closet, but it fit much tighter on that person than it did on me.

    Maybe it was the angle, or maybe the picture was altered—people can do all kinds of things with AI these days. Either way, I was suspicious of the image’s authenticity because I was blessed with a fast metabolism. I was the same weight for most of my youth and a consistent, slightly heavier weight for most of my adult life. It didn’t matter how much I worked out or what I ate.

    “When you’re 25 it will change…”

    “When you’re 40 it will change…”

    But it didn’t change. Even if my routines or diet did, everything averaged out to keep me exactly where I was. As I said, I was blessed.

    But then I remembered that, around the time that picture was taken, I had my first physical since the pandemic. As I stood on the scale, the number that appeared was much bigger than I had expected. The lab work that came back also showed markers that led my doctor to discuss medication to treat high blood sugar and cholesterol.

    Maybe that was me in that picture, after all.

    Do you remember the movie The Perfect Storm with George Clooney and Mark Wahlberg? It’s about these fishermen who get caught at sea when a trio of storms merge into, well, a perfect storm.

    That’s what happened to me during the pandemic. The combination of the world shutting down and limited access to my regular physical activity, the stress and unhealthy eating choices that came with it, and the increased fear, anxiety, and depression from extreme isolation and watching my son deteriorate physically and emotionally combined into a storm that consumed me.

    Even after we moved out of the city and the world began to open up, I couldn’t find my way out of it. Even after we found a school for our son and he began to improve, I couldn’t find the motivation to change. The storm had knocked out my engines, and I was drifting at sea.

    My physical exam results were like the light from a lighthouse far in the distance. I was drifting, and they warned me of the rocky shore ahead. I had to decide whether to continue to drift in that direction or try to fix my engine. Like the fisherman at sea, I thought about my family, who depended on me. I thought about the adventures we’ve had and the ones ahead of us.

    I picked up a book by Peter Attia called Outlive that discussed longevity and living better longer—not just living longer but living the life you want in the future. I don’t want to be 80 and sedentary. I want to travel with my family and be able to put my luggage in the overhead compartment on a plane. I want to play basketball with my son, play tennis with my friends, and go on long walks with my wife and the dogs.

    According to the book’s philosophy, I had to consider my future and work backward to the present to prepare for the life I wanted. That meant changing my ways that led to the person I saw in that picture and who stood on the scale in the doctor’s office. If I wanted to continue to be there for my son and family, I needed to fix my engine.

    The timing of this post wasn’t intentional, but it is serendipitous. As we begin a new year, it’s a natural time to reflect on where we are and where we want to go. The world and our lives are stressful enough, and being parents of children with special needs adds another layer of complexity and challenge that often leads to exhaustion, feeling overwhelmed, and depression.

    The decision to change—even in small ways—can set us on a better path. Whether it’s prioritizing your health, finding balance, or being more present for your loved ones, the first step is recognizing the need for change and believing it’s possible.

    Here’s to a year of growth, resilience, and renewed purpose.

  • Rock On

    Rock On

    The image above was 10 years in the making.

    The photograph on the left was taken in July 2014. We were in Philadelphia ahead of our eventual move from Colorado. My wife and son had a long week of exploring and house hunting, and we thought we’d unwind and play games. About an hour after that picture was taken, we’d be standing in the lobby waiting for a taxi and watching our son have his first seizure.

    Over the next 10 years, we’d see our son have countless seizures. We’d have many nights where we thought we would lose him. We would spend months in the hospital saving his life and then years trying to rebuild what was damaged. We would struggle to find his place in the world.

    The photograph on the right was taken at Dave & Buster’s a few weeks ago after our son’s last school day before winter break. As I walked around the corner and saw him pick up the guitar, I had the image of my present-day and my son 10 years ago, like two different realities, crashing together in my mind.

    While we’ve had struggles and challenges in the last ten years, the significance of that moment was that we’ve also had successes and accomplishments. Our son is 15 now, and we’ve had so many years we weren’t sure we would get. He plays baseball, enjoys gaming and streaming, and has friends. He’s in a school for kids like him, which gives him a place to learn and grow.

    When the picture on the left was taken, we didn’t appreciate how little knowledge and control we had over the future. Later that night, any vision we had for the future was shattered. The picture on the right reminded me that we can never predict the future. We can only learn to embrace every moment, victory, and opportunity to pick up the guitar and rock on.

  • Perceptions of Time

    Perceptions of Time

    A nurse led us into the recovery room, where the first thing that struck me was the stark change in my son’s appearance. His familiar Bryce Harper haircut had been replaced by a closely shaved head, but it wasn’t just the missing hair. As we rounded the bed, my wife and I froze. There, across our son’s skull, were the sutured incisions, and beneath the skin, the faint, raised outlines of the leads that connected deep into his brain, extending down to the generator implanted in his chest.

    We both gasped, instinctively reaching out, trying to bridge the chasm between shock and reassurance.

    I don’t know what I was expecting. Maybe nothing could have prepared me for the reality of seeing those physical marks—a visceral reminder of just how serious his condition is. It was more than jarring. It was a harsh collision with the truth that no matter how much we try to normalize life, this—his reality—is never far away.

    Seeing him reminded me of the last time he was in a recovery room after having his VNS implanted. The visible signs of that surgery were less intense. However, it was still our little boy sleeping on a bed in front of us who had, only hours earlier, been sedated and opened up on an operating room table, then carefully stitched back up after inserting a few extra parts.

    The DBS and the VNS were only two of the many procedures that our son has had at this hospital, the same hospital that saved his life and the same hospital that continues to look for ways to improve it. He’s had almost every type of scan, given gallons of blood, taken piles of pills, received tons of therapy, and otherwise been poked, prodded, and tested in every way possible.

    After he woke up, he was moved to the neurology floor, which had been our second home for a long time. Once we settled into his room, a wave of comfort washed away the shock and anxiety of the surgery. With that comfort also came the familiar change in the perception of time.

    Time on this floor doesn’t pass the way it does in the outside world. Inside these walls, it feels suspended, each moment stretching out between visits from the doctors, nurses, and support staff. We’d sit on the blue couch that doubled as a bed, gazing through the windows at the city rushing by below. We’d try to fill our time with distractions—phones, TV, bingo—but no amount of distraction makes the intervals between visits any shorter.

    Minutes stretched to hours stretched to days as they monitored our son, and we waited our turn for the final scans he needed before we could go home. To our real home, not this second home. To the real world, not this isolated, supportive, comfortable world. To the place where we would now wait, again, for our son to recover and to see if the procedure and the device make a difference.

    Looking at the past, at everything that happened to get us to this point, time passed in a flash. In the hospital, in our bubble of comfort and support, time stood still. Looking at the future, waiting for another answer, time stretches out for eternity.

  • Discovering What’s Next

    Discovering What’s Next

    Our son is officially a 9th grader, adding to our list of milestones and events we weren’t sure we would see.

    We are very fortunate to be able to start high school in the best way possible. The school he has been at since 6th grade offers a transition year, which we are taking advantage of with the support of our school district. That means he will have the same teachers, peers, and environment to continue his journey for another year. Especially with the looming surgery, recovery time, and uncertainty with his tolerance for calibrating the brain stimulator, keeping him in a place where he is comfortable and cared for is a gift.

    This is going to be a year of changes. Unless higher grades magically appear, this will be his last year at the school, and his peers who have been concentrated at his school will find high schools in their home districts. This will likely be his last year of baseball, as the level of play and competition at the next level may not be something he can manage. His peers will get their learner’s permits and start driving, something he won’t be able to do while he is still having seizures.

    No one knows what is on the other side of these changes. I am sure he will find friends among his new peers and that other interests will replace baseball. While he won’t learn to drive with his peers, there will be other rights of passage to conquer and other ways to grow.

    But many of these changes are still on the horizon. He has 9th grade to look forward to and another baseball season. He has his school, teachers, peers, and friends. He has and will always have his family. And together, we can navigate these changes and discover what’s next.

  • Making It Up As He Goes Along

    Making It Up As He Goes Along

    For as long as I can remember, my son has struggled with his memory. Whether it’s his school day or details about anything in the past, when we ask him about it, he doesn’t remember, or his answers are vague or confusing.

    If we ask him about a choice or why he did something, he usually says, “I don’t know” or “I don’t remember.” He’ll also say “yes” to most leading questions because he thinks it’s the right answer or what we want him to say. Or he’ll answer with reasons he might think of when we ask him the question rather than those that were more relevant at the time. It’s like applying hindsight to make sense of a choice made in the past, even though the information on hand now wasn’t available when the choice was made. Sometimes, it seems like he just makes it up as he goes along.

    I assumed this condition was related to his epilepsy or the side effects of his medications. Perhaps the same factors that cause his generalized seizures also affect his brain’s ability to process and store information.

    The other day, I was listening to a Fresh Air interview with Dr. Theodore Schwartz, a neurosurgeon who wrote a book called Gray Matters. In the interview, Dr. Schwartz described how the brain makes decisions, and it sounded like what happens to my son.

    And then what studies have shown is that a person will behave in a particular way based on something that’s unconsciously being processed in their mind.

    And if you ask them, why did you do that? Why did you behave that way? They will make up a story to make sense of it based on something else that’s going on around them.

    And it makes you realize that often a lot of our behaviors are done in an unconscious way, and we make up a story afterwards to try to make sense of why we did what we did. You can stimulate the brain and make someone turn their head from the right to the left. And if you say, well, why did you turn your head?

    They say, well, I was just looking for my shoes. I lost my pencil or something. And they will create agency where no agency exists.

    And so over time, you realize that the idea of the self and the idea of a unified self and the idea of making certain decisions that we think we’re in charge of, probably doesn’t happen in the way that you think it does.

    From Fresh Air: A Brain Surgeon Opens Up About Life In The O.R., Aug 5, 2024

    Our son’s subconscious seems to control many of his decisions, more than a typical teenager. That helps explain why he can’t remember the reason for making a decision, his struggles with impulse control, and his ability to always think through the consequences before taking action.

    The interview made me think about how we’re handling our son’s condition. How can we influence now to help his subconscious make good, safe decisions in the future?

    Over the years, we’ve learned to patiently navigate the maze of his memory to get an answer, trying to extract the subconscious reasoning and make it conscious with the hope that the process influences his subconscious the next time he encounters a similar situation. That way, even if he doesn’t always remember the reasons when thinking back, we can help make his subconscious reaction the right one.

    Obviously, it’s impossible to predict every decision that he will need to make in his life, but I hope that by continuing to train his subconscious with the decisions he is making today, his brain will generalize that training and apply it to related decisions in the future. When his subconscious takes over, it can at least draw from existing associations between reasons and good choices and apply them to that situation.

    There’s no guarantee that it will work or to what degree, but we’re all just making it up as we go along.