epilepsy dad

Tag: parenting

  • 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 His familiar Bryce Harper haircut had been replaced by a closely shaved head, but it wasn’t just the missing hair.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.

  • Guilt, Shame, and Fear

    Guilt, Shame, and Fear

    I recently stumbled upon a reference to how cultural anthropologists categorize societies based on how they control behavior in those societies as guild-shame-fear.

    I pulled these descriptions from the always dependable Wikipedia:

    Guilt Society

    In a guilt society, control is maintained by creating and continually reinforcing the feeling of guilt (and the expectation of punishment now or in the afterlife) for certain condemned behaviors. The guilt worldview focuses on law and punishment. A person in this type of culture may ask, “Is my behavior fair or unfair?” This type of culture also emphasizes individual conscience.

    Shame Society

    In a shame society (sometimes called an honor–shame culture), the means of control is the inculcation of shame and the complementary threat of ostracism. The shame–honor worldview seeks an “honor balance” and can lead to revenge dynamics. A person in this type of culture may ask, “Shall I look ashamed if I do X?” or “How will people look at me if I do Y?” Shame cultures are typically based on the concepts of pride and honor. Often actions are all that count and matter.

    Fear Society

    In a fear society, control is kept by the fear of retribution. The fear worldview focuses on physical dominance. A person in this culture may ask, “Will someone hurt me if I do this?”

    I was interested in the topic because I have lived at the intersection of all three.

    Until sixth grade, I went to an old-school Catholic school and church, where the nuns still wielded rulers as weapons, and God was always watching and never approving. I can still picture one of the sisters with terrible arthritis, and her hand contorted perfectly to wrap around one of the long wooden chalk sticks. I remember feeling that everything I did was a sin, deserving of punishment, and wrong, deserving of exclusion.

    I also grew up in a household with a single, frustrated, angry mother and an older, equally angry sister. I spent a lot of time trying to be and keep everything perfect to avoid getting punished, always fearful of the hand and the wooden spoon.

    I thought this was normal. As I got older, the voice inside my head would take over for the nuns, my mother, and my sister, reinforcing the messages of guilt, shame, and fear.

    It wasn’t until after I was married and we had our son (and a lot of therapy) that I started to see and understand that my childhood was traumatic and how it affected me as an adult.

    Guilt is what kept me feeling wrong.

    Shame is what kept me feeling alone.

    Fear is what kept me feeling small.

    The behaviors that I developed to help me survive in a state of guilt-shame-fear became toxic in my adult relationships, closing me off to the people I desperately wanted to be close to and spreading out to every aspect of my existence: relationships, love, intimacy, sexuality, self-esteem, friendships, goals, expectations, happiness, comfort, safety.

    What got you here won’t get you there…

    I am on a journey of recovery and untethering myself from my old patterns and beliefs. However, as I go through this process, I want to ensure that my son has a different experience. While we’re not religious, and there (probably) aren’t nuns waiting around the corner, the most likely transmitter of the guild-shame-fear burden is me.

    I still wrestle with my lingering expectations of perfection and fear that I will disappoint the people around me. I still feel the grip of guilt and shame for my actions and who I am.

    While I am very conscious of the words I use when I engage in these topics with my son, it’s not only the words that influence how he interprets these messages. It’s how he sees my relationship with these feelings that will demonstrate what his relationship with the feelings should be. Even when I think I successfully internalize or hide these feelings, I know I am not that good of an actor. Their effects are visible on my face, body, voice, and how I present myself to the world.

    In many ways, the work my wife and I have done has created a very different environment for our son than either of us had. I can see that in how he interacts with the world. He isn’t fearful like I was and is one of the bravest people I know. He feels guilt when he does something wrong, not thinking everything he does is bad like I did. And his relationship with shame is much healthier than mine, and he can also feel dignity and positive self-esteem.

    It’s not perfect, and we’re continuing to equip ourselves with the knowledge and tools we need to continue to develop a healthy relationship with these feelings in ourselves and him. But I see such a difference in him compared to what it was like for me growing up, and seeing that difference gives me hope that I can continue to make changes for myself, too.

  • Dream Big

    Dream Big

    The other day, I was driving my son to music camp. The camp was at the same place where he takes his drum lessons but, rather than private lessons, the camp groups the kids into bands that perform at the end of the week.

    When I asked my son if he liked the band experience, I expected his response to involve the difference between lessons and performing or what it is like to play with other musicians. Instead, his response centered around wondering if he would get on the Wall of Fame that the school had of previous students.

    I wasn’t entirely surprised by his response. Very often, his goals involve a championship. When we talk about hockey, he wants his name to be on the Stanley Cup. When we play Fortnite, he wants to be on the leaderboard or have his own skin like the influencers have. He talks about subscribers and likes for his Twitch feed and YouTube channel.

    As a kid, I remember being young and obsessed with getting my initials on every video game I touched to leave my mark on everyone who would play the game after me. At one point, my initials filled the high score screen of a game called Mr. Do that I played every day while waiting for the school bus.

    I played basketball in the driveway and imagined the next shot was a buzzer-beater to win the championship, and I tossed balls in the air and pretended that I faced a full count and needed a hit to win the game. Creating the ultimate clutch scenario and delivering is the dream of many would-be heroes, even those of us who were not destined for sports greatness. It added drama to a sport or game that I loved to play.

    I’ve heard interviews with professional athletes who had the same dreams, except they focused on achieving them. Even at a young age, they would spend hours working on their game, taking slap shots, making free throws, or swinging a bat. They aimed to become a professional athlete and help a team win a championship by delivering in that clutch moment.

    Whether it’s video games, sports, or music, that desire to be the best can be a great motivator. But what happens when achieving that dream becomes the bar? What if whether a dream is achieved becomes the only measure of worth?

    I love that my son has big dreams. For everything he has been through and everything he struggles with daily, he could have just as easily become a victim of his situation and have no dreams at all. But I’m afraid that if he doesn’t achieve his dream, he will resent the experience rather than be proud of himself for what he did accomplish.

    I realize those are my feelings and may not be his. It breaks my heart that his chances of playing in the NHL are minuscule, and because I’m disappointed for him, I’m expecting him to be disappointed, too. But my feelings are based on my frustration and anger at what his condition has taken from him, which probably results in a higher degree of disappointment, just like it results in a higher degree of admiration for what he can accomplish.

    Ultimately, my job as his parent is to let him have his dreams and make it okay, whether he achieves them or not. My job is to instill in him the ability to be proud of himself for his accomplishments and to encourage him to love the experience, the sport, and the time he could do what he enjoys. It’s my job to show him that there is a sense of accomplishment in doing something and then working at it to improve and become the best you can be, even if it doesn’t come with a trophy or picture on a wall.

    I’m a big believer in dreaming. If you don’t dream it, you can’t become it. – Magic Johnson

    Dream big, pal.

  • 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.