What Is Left To Say?

When I started this blog almost 5 years ago, we were only just beginning our epilepsy journey.

The first few posts were written from his room on the neurology floor of the children’s hospital as I watched the doctors tried to stop his seizures. I wrote as a way to process my thoughts and feelings as I worried about losing my son and learned about words like status epilepticus and refractory.

After we left the hospital, I wrote about how our life changed. I shared stories of how we tried to rebuild my son after those initial waves of seizures took so much from him. I wrote about his therapies and how the exploration and experimentation with different medication led to the same frustrating results or unbearable side effects. I wrote about my fears about VNS surgery and my frustration with the hardship of the ketogenic diet.

For the past year, very little has changed. In spite of having a VNS implanted, adjusting his medication, and continuing the ketogenic diet, my son is still seizing almost every day. I still worry about the risk of SUDEP. I still worry about the long term effects of these seizures as I watch him slowly fall behind his peers at school.

When I would sit down to write, it started to feel like I was always wanting to write the same things and that I had already put my thoughts and feelings down. I wasn’t sure what was left to say, so I didn’t write anything.

Not writing had the additional benefit of not having to look beyond the surface of our lives. I could stop probing how I felt about the challenges my son faced and what it meant for his future. I could just live in the present and deal only with what was in front of me. But that began to feel like I was shirking my responsibility as a father and doing a disservice to myself and to my son.

During the time I stopped writing, I also received a number of messages from the epilepsy community. They reminded me that that others were going through the same challenges. I started this blog for myself but it brought me into a community of people who had already been where I was as well as people who were just starting on this path. The unexpected benefit of putting ourselves out there was that is reminded us that we weren’t alone. When things were dark and scary and uncertain, that gift provided immeasurable comfort.

I was worried that because nothing has changed that I wouldn’t have anything to write about, but that is part of this journey. The ups, downs, and the long stretches in between filled with uncertainty, frustration, accomplishments, and joy are all part of life. They are the things that remind us why we are here and bring us closer together. They are our outstretched hands reaching in to the darkness that are met by the hands of others grasping for connection.

As the new year began, I have started waking up early again. I make my coffee and sit on the couch in a quiet house staring at a blank page. I think about our life, past, present, and future. I think about the people we’ve met along the way, and I start filling the page with words.

It turns out, I might have more to say after all.

A Movie Script Ending

Our journey with epilepsy has the makings of a movie.

It has the time before. The time before epilepsy. The time before seizures. The time before medication, and side effects, and surgery.

It has the inciting event. The first seizure in the lobby of the arcade. The second seizure onboard an airplane. The “ticks” that turned out to be seizures that snowballed into status epilepticus and months in the hospital. The days when my son couldn’t talk or move. The night when my son was surrounded by a team of doctors trying to save his life.

It has an enemy and its name is Epilepsy.

It has the struggle. Every day. Early morning seizures. Exhaustion. Navigating the world in a fog. Trying to keep up. Learning. Behavior. Therapy. Rebuilding.

But it doesn’t have an ending. In the movies, the hero faces challenges, defeats the enemy, and returns home victorious and transformed. But we’re still on the journey and there isn’t a clear path home. Our enemy is one that he could face for a lifetime.

I started this post years ago. It sat unfinished, but I had an idea of how I would end it.

Compassionate people reassure us and say some children grow out of their seizures. We smile and nod, but its like they are watching from the seats in the theater but we’ve seen the script. We know what’s going to happen next but don’t want to reveal any spoilers. If they knew the ending, this isn’t a film that most people are going to hang around to see. Because people love a happy ending.

I wrote that at a time when things were exceedingly hard and relationships with the people around us were being tested. Some of those people are no longer in our lives. But, in spite of how I felt it was going to play out at the time, some people stayed. We’ve gone from feeling as if we were always going to be alone to cherishing what we have. Who we have.

It is true that our story may not have an ending, but it does have one more thing. The journey revealed many lessons about ourselves and the people around us. It showed us who is in our corner. The struggle forged stronger bonds. The journey has given us allies and surrounded us by our village. Our people. Our family. And we draw so much strength from knowing that we are not on this journey alone.

“There are no words to express the abyss between isolation and having one ally. It may be conceded to the mathematician that four is twice two. But two is not twice one; two is two thousand times one.” ~GK Chesterton

Invisible In Plain Sight

I stepped on to the street on my way to work. As I joined the flow of foot traffic, I saw a young man walking quickly ahead of me. I say “walking”, but he was bouncing more than he was walking. I didn’t see any of the earphones that I and most of my fellow pedestrians were wearing, but he was moving as if he had a soundtrack playing in his head that lightened his steps.

I noticed him because he was so different from everyone else on the street. He was a tall, young African American teen wearing a bright blue t-shirt surrounded by an army of mostly white business people dressed in muted black, brown, or blue. He head was up as he looked at the world around him while that world was looking down at their feet or at their phones.

When he stopped at a crosswalk, I got close enough to see that he would sometimes raise his hands and sign to no one in particular. It was as if he was signing the lyrics to the song in his head. Like when the chorus of a really good song comes on and you find yourself singing along, even if only in your head. From half a block away, this young man looked like joy personified walking up the street.

The light turned green before I could catch up to him. He danced through the intersection and on his way. As he did, I saw that he would occasionally wave to people passing in the opposite direction. Even from my distance, I could see a big smile on his face. But no one that he waved to reacted. They kept their head down. They looked at their phones. They looked the other way.

Maybe they didn’t see him. Maybe they were busy. Maybe they were really interested in whatever was on their screen. Maybe they were scared. Or maybe they just couldn’t be bothered. We live in a big city and I see people ignoring the world around them and everyone in it all the time.

I thought that maybe the young man had a disability because he was signing. Or maybe he was just different than, in color and age and general attitude, the other people on the street. But watching how the young man was being ignored made me think of my son.

Epilepsy is often called an “invisible” condition because it lacks physical markers, but there can be signs. We’ve had more than a few people ask us politely “Is there something wrong with him?” after they spend time with our son. He’s noticeably different in a self-centered world that doesn’t seem to have a place for people that are different. We talk about diversity and inclusion but we look the other way when it is our turn to act…when it is our turn to accept someone who is different from us.

I watched the world look away from that young man on the street. I saw the world unwilling to acknowledge another human being. I don’t want that for my son but I don’t know what to do about it. I wish I could change the world. I wish I could make it more accepting, more forgiving, more tolerant, more open, more aware. But we’re heading in the wrong direction. I fear that the only thing that I can do is prepare my son for the road ahead.

But then I turned my attention back to the young man. I could see, as he waved to the next person, that he was smiling. Even with the world ignoring him, he was walking with a bounce in his step and smiling. He would wave at another person. And then another. And he would keep smiling. I watched him not slow down, not shy away, and keep moving forward. I thought of my son then, too, because he has that same persistence, the same drive to bring joy to the world. And for a brief moment, I felt hope.

I never caught up to him, but I wish I could tell that young man that he brightened at least one person’s morning that day.