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.

 

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.

epilepsy dad reality medicine prescription

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.

epilepsy dad bruised knees reality

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.

Fatherhood And Preparing My Son For A Future With Epilepsy

This post is part of the Epilepsy Blog Relay™ which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!

Today is Father’s Day.

This morning, like most weekend mornings, I’m going to wake up to the sound of my son pushing the door to our room open, the squeaky hinges announcing his arrival. I’ll open my eyes and watch him toss his green and white blankets and a few of his stuffed animals on to the bed, climb over me and lie down in between my wife and I. He’ll put his fingers in his mouth, close his eyes, and snuggle up next to us, the sound of him sucking his fingers right next to my ear keeping me from returning to sleep. I don’t mind, though. This is how most weekends go, and I wouldn’t want it any other way.

epilepsy dad stigma fatherhood parenting

It’s in these early morning hours, as I lie awake in bed next to my family, that I sometimes think big thoughts. When I was a new father, still overwhelmed with idea of being responsible for another life in this world, I would have grand thoughts about the type of world my son would live in. Would there be enough food and water for everyone? Should I be recycling more? What about clean air? Should I get a more fuel-efficient car? Should I bike to work?

As he got older, and as I settled in on the idea that he’s more durable than I had assumed children would be, those early morning thoughts turned to more hopeful things. What number would he wear on his jersey in the NHL? How old would he be the first time he saw the earth from space? How often would they let me visit him in the White House?

For the past two years, after my son was diagnosed with epilepsy, I started asking different questions. These questions were shaped by our experiences struggling to control his seizures, managing his medicine and the ketogenic diet, and trying to normalize his life as much as possible. Would he ever be seizure free? Will he be able to live on his own one day? How can I best prepare him for the challenges ahead? How can I teach him to love himself and believe in himself against the stigma that comes with having epilepsy?

The last question is one that I’ve been thinking about more lately. He’s only in kindergarten, but there have already been incidents where he has been made to feel different because he has epilepsy. Questions about why he misses so much school and leaves early, or the snickers from classmates that come from his bizarre ketogenic lunch that sometimes includes taking a shot of oil, I can see him starting to pull away. He’ll sit by himself, or he’ll tell us he doesn’t want to bring a lunch to school. This is already happening, and he’s only in kindergarten.

The more involved I become with the epilepsy community, the more I get a glimpse of the challenges ahead for my son. I read the callous, insensitive tweets from the uninformed, misguided people who post messages about “being glad that they don’t have epilepsy” or how a video or light show “almost gave them epilepsy”. I read the messages of sadness and despair from those living with epilepsy and the stories of discrimination, and about how epilepsy “isn’t being a real thing” because there aren’t any visible signs.

There are many mornings when I’m lying next to my son and I get scared. I don’t want that world to squash the light inside the little boy who is so brave and who cares so much for those around him and who loves and who dreams incredible things. I’m worried that I am not equipped to help my son navigate that world, and that I will fail him…fail at the greatest thing that I will ever do, and that is being a dad.

On those days, when I seem to need it most, he will roll over and puts his arm around me. I instantly feel better. I remember that the most important thing I can do for my son is to love him unconditionally, which I do in abundance.

I think about that community where I have seen so much sadness and I remember the overwhelming feelings of support and hope that are much more common. They share their stories, many of whom you may read as part of this blog relay, and I, too, am hopeful and inspired to lend my voice to the choir…to sing with them the stories of what it means to be the dad of a child with epilepsy, the struggle, the joy, and the lessons that I learn along the way.

Maybe it will be this morning, when I won’t be awoken too early by the sound of a creaking door, or him sucking his fingers. Maybe I’ll feel confident that I’m doing my part by advocating for my son, and I’ll think about how far we have come, and that I’m leading with love and helping build a foundation in him that will help him face the challenges that will be ahead. Maybe this morning I will be able to fall back asleep, only to be awoken a few hours later by the four most magic words that will remind me how lucky I am and how hard I will fight.

“Happy Father’s Day, Daddy.”

NEXT UP: Be sure to check out the next post tomorrow by Whitney Petit at Changing Focus: Epilepsy Edition for more on Epilepsy Awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET.