I Am You / Dispatches From Epilepsy

I am you.

I am you if you are a parent of a child with epilepsy.

I am you if the future you had planned looks very different from where you are today.

I am you if you haven’t had an uninterrupted night of sleep in years.

I am you if there is nothing more important to you than your family.

I am you if you weren’t prepared for the detour that life took you on.

I am you.

But I am also not you.

I am not you because your experiences are your own.

I am not you because there are things that you deal with every day that I cannot imagine.

I am not you because you, and only you, are you.

My wife and I recently watched Dispatches From Elsewhere. In it, the show suggests that we are just like everyone else and that the pain we are feeling is not unique. It’s easy to feel isolated and alone, and that no one understands the pain and challenges that we’re facing every day. But there is also something so comforting about the idea that I am like you, and that others have been where I am.

Your pain, whatever it is, is 0% unique, as hard as that might be to believe. You are special. But not because you are unique. You’re special because you are exactly like everyone else…perfect.

It’s something I’ve seen since I started blogging and connecting with many of the wonderful people in the epilepsy community. So many of you have reached out from different parts of your journey…ahead of me, following me, or right where I am. We’ve talked about how many experiences we have in common. And that has given me hope. It has made me feel connected and very much not alone.

The show also explores change, both within ourselves and in the world around us. I have often felt stuck, trapped by circumstances, and not knowing what to do next. And, looking at the world around me, I have never felt so insignificant and unable to influence a world that is so desperately in need of change. It’s overwhelming to think of myself as a small drop of water in a huge ocean. But the message is that, while we are so convinced of our separateness, we are all drawn from the same source. We are all in this together. And together, that is how we can make change.

Change comes when we find one another. For once we find each other, the energy of our collective spirits can take flight, and the world around us begins to change.

It is true if we limit ourselves to our tiny mind instruments that you are you. But perhaps, if we let our subtler tools take the lead we may glimpse the truth, even if only for a moment.

There is no you. There is no me. There is only we.

I think we need this message now, more than ever.


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