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 His familiar Bryce Harper haircut had been replaced by a closely shaved head, but it wasn’t just the missing hair.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

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

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.