Owning My Duality And Being Seen

“Well,” I said, “twenty minutes before I got here, I watched my son have a seizure on the living room floor.”

The room fell silent.

What had started as a casual conversation about our personal lives and what we allow to escape turned in to an honest conversation about what it means to really know another person, and I dropped a bombshell.

I felt the emotion in my voice as the statement left my mouth. The quivering that comes from keeping my despair in check. I thought of the other seizures he had that day, and the one he had at 3AM as I walked in to his room. He was on the floor, changing his pajamas because he had an accident from an earlier seizure when another one hit him. As I reached him, his slurred words told me he had another bad seizure, and he cried.

I didn’t bring that up, though, so in the grand scheme of things, it was only a little bombshell. But it was enough. Maybe too much.

I rarely talk about those details. While friends, families, and coworkers occasionally ask how my son is doing, those glimpses can’t tell the full story. His condition is central to our experience, but the details of what we go through every day rarely cross the invisible boundary between our world and the one outside our walls. When I step out my door, I leave that struggle at the threshold and become the person that I need to be to fit the situation that I am entering.

There is a wonderful Ted talk by Ash Beckham where she talks about owning our duality. We should not be polarizing in our views…we shouldn’t have to choose between this or that. Instead, we can be both. Ash didn’t have to choose between being an aunt and an advocate, she could be both. She could hold those two things at the same time. Through compassion, empathy, and human interaction, as complex individuals, we are capable of holding so much more. She goes on to say that if people don’t see those things we hold or those things that we are, then they can’t truly see us.

I went back to that video as I was writing this post. I thought about how I don’t connect deeply with many people, and I wondered how much of that was because I don’t let those pieces of myself come out. I’m expecting to somehow build meaningful relationships without sharing those things that are most important in my life. If people aren’t given the opportunity to see how deeply I am affected by what is happening to my son, then how can I expect them to see me?

I need to own my duality. I need to be able to hold many things. And I need to be able to share those things with the people around me if I ever hope to build the types of relationships that are built on compassion, and empathy, and on truly being seen.

It’s not an easy task. It’s not easy to change the years of programming and overcome the societal expectations of men that left me closed and guarded and hidden. But it’s important. Maybe one of the most important things I can do for myself, and certainly an important example that I can set for my son so that he doesn’t go through his complicated and difficult life alone. He, too, will be many things at once, and I would like for him to be able to be those things at the same time, and to be seen for the brave, resilient, complex, and special individual that he is.

August 18, 2016
It’s Hard To Come Home

After three weeks of traveling, we headed back to Philadelphia. My son laid with his blankets against the window and we watched Colorado disappear in to the distance. The cars and the people were the first to fade, including the friends and family that we left two years ago when we moved east. The roads and the buildings were next to go as we climbed higher. Finally, the mountains were gone beyond the horizon as we straddled the line between the life that we had and the one we are trying to build in our new home.

It was good to be in Colorado. It was good for my son to be there, surrounded by people who love him. Surrounded by some of the only friends he has. Even though we’ve lived in Philadelphia for two years, for most of that time, he was sick and wasn’t able to make many strong bonds. Colorado, for him, still represents his universe, where everything is except for us. Philadelphia has only a smattering of significance, with a few friends but where most of his connections have come through the hospital or his condition.

It was good for me to be in Colorado, too. It was good to see my family happy. It was good for me to be able to talk face-to-face with friends that knows us from before and after the move and from before and after the seizures came. I move around a lot, and I don’t tend to keep people in my life that span the transition. It’s hard for me to maintain the connection, even though technology has in many ways made it easier. So those connections usually fade, just like the landscape passing by the airplane window.

But leaving Colorado was different. Those connections that we made there were stronger than I have ever had before. The life that we had there carries more weight than the life here that we have still yet to build. In many ways, Colorado still feels like home, but I force myself to respond with “Philadelphia” when I’m asked where home is, as if I’m trying to train my brain to actually believe it.

That makes it hard to come back. To leave a place where my son wore a constant smile. Where the faces of the people who looked at my son were those that love him and accept him and that weren’t only doctors or nurses or therapists. Where we were graced by a few seizure-free days. Where, when we lived there, anything was still possible.

I looked out the window from 35,000 feet. The landscape was a wash of browns and blues and greens. There wasn’t anything to identify where we were, and I felt the pull from both the east and the west. Between the future and the past. Between possibility and acceptance. These two places that were my homes…that are my homes…that mean completely different things.

As the plane hung in the air between those two places, I thought how hard it was to come home.

Especially when you don’t really know where home is.

August 4, 2016
The Impossible Choice And The VNS

There are still days when I think that this is all temporary and that my son will someday outgrow his condition. The medicine, and the side effects, and the diet are all short-term measures that we are only doing until his brain sorts itself out, and then we can stop them altogether. These inconvenient years can become a distant memory.

Holding on to that fantasy is partly what made me reluctant to agree to VNS surgery for my son. Vagus nerve stimulation (VNS) is a technique used to treat epilepsy that involves implanting a pacemaker-like device that generates pulses of electricity to stimulate the vagus nerve. In theory, this stimulation can be tuned to disrupt my son’s brain’s bad habit of firing all its neurons at the same time in uncontrolled bursts, which is what causes a seizure.

There is a sliding scale of expectations with the VNS. Best case, it helps manage his seizures and we can revisit his medications and the ketogenic diet. Next best case, it helps regulate the break-through seizures he is still having. Worst case is the same worst case as every new treatment we try…nothing happens. Except, of course, for a list of new risks and side effects, both from the surgery and from the stimulation. Tingling, numbing, an altered voice, headaches, difficulty swallowing or breathing, just to name a few.

But it wasn’t just the risks that made the decision difficult. The surgery feels more permanent. They’re going to cut in to my son and insert a box with tiny wires wrapping around a nerve that leads to his brain. Once they cut him, he cannot be uncut. Even if we remove the box and wires because the seizures do go away some day or because it doesn’t work, he will have a scar to remind him of the hardships that he had to endure at such a young age. There will be no room for denial or pretending that none of this happened.

Because it is happening.

Whether we have the surgery or not, whether it works or not, this is our reality. As I struggled with my decision, another epilepsy dad told me that we should do whatever we can to help our children. Whether it works or not, if there is a chance that it can make their lives better, it’s worth it.

In the end, that has to be enough. To keep hoping for a better life and to keep trying things, even following failure after failure. Accepting the idea and agreeing to the surgery is another in a long list of impossible choices.

We scheduled the surgery, but I wake up every day wanting to call it off. To keep my son whole. Time and his condition, however, are quickly taking aware that option.

July 28, 2016
Five Seconds

They come in the early morning. Just as the sky is starting to lighten but hours before any of us want to be awake, these unwelcome visitors start as a misfiring in my son’s brain before traveling through his body and entering our world.

His seizures come like rolling waves. The first wave is long and drawn-out. It serves as the siren, alerting us . His body stiffens, his lungs slowly expel their content in a low, distinct moan. I wake up, roll over, put my hand on his chest, and tell him that it’s going to be okay.

One-one thousand.

A series of shorter waves come next. His body loosens slightly, then tenses again with a grunt. The cadence of the waves becomes steady beneath my hand.

Two-one thousand.

I sit up, rubbing the sleep from my eyes. They adjust to the dark and I can see my son’s body convulse. His eyes flutter, matching the timing of the repeating pattern of his body.

Three-one thousand

My perception of time goes awry. A few seconds have passed, but the agony that I feel acts as a multiplier and those seconds feel like forever. I have time to wonder whether these seizures will end soon or whether they will keep their tormenting hold on my little boy. There are no signs, no clues to help me predict the size of the storm. The only thing to do is to wait and to keep counting.

Four-one thousand.

The waves elongate slightly and are less intense, which gratefully means the end is near. I start to rub my son’s chest again and reassure him. I want my voice to be the first thing he hears. I want to give him a safe place to return.

Five-one thousand.

The seizures release their grasp on my son and his lungs fill violently with air as he desperately inhales. He sits up in bed, trying to get his bearings. He’s teetering between sleep and the unwanted awakening that his firing neurons have forced upon him.

I continue to watch him as the waves dissipate. Sometimes he simply turns over and falls back asleep. I like those times the best because its like he rides the waves of seizures safely back to shore. Other times, the waves crash his tiny frame in to the rocks. He cries and it breaks my heart even more.

July 14, 2016
Reality Always Wins

It’s easy to let denial take the lead. If we make it a day or a week without any seizures, it’s easy to let what is happening to my son fall to the back of my mind. There are moments when I let myself believe that we made it through it, that we figured it out and that the seizures are gone. Even if it’s just for a moment or an hour or a morning, I welcome the ignorant bliss that denial carries with it and pretend that this is not happening to my son.

The problem with denial, though, is that it doesn’t last forever.

Even without seizures, there are daily reminders that destroy the illusion. There are the pills that fill his tiny hands each morning and night that try to keep the seizures at bay. There is the diet that wreaks havoc on his body and takes away his freedom to enjoy the terribly delicious food that other kids take for granted. There are the behavior and attention issues that come with his condition and the side effects of his medication. There are the days when his balance is off, and when he falls a lot…a glance at his constantly bruised shins serve as his battle scars.

It’s hard to be in denial when you’re confronted with the effects of epilepsy and seizures every day. Ignoring these effects or simply wishing that things were different isn’t enough to keep reality from bleeding in to the fantasy. No matter how hard I try to keep it afloat, this denial bubble always bursts and sends me crashing back to earth. My shins are bruised, too, from bending over to pick him up off the ground. My heart is bruised from watching this happen to my sweet, innocent, and special boy.

The problem with denial is that it doesn’t last forever.

Reality always wins.

The problem with denial is that it doesn’t last forever. Reality always wins.

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July 7, 2016

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