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.

 

Let’s Go To The Tape

I remember watching sports on television as a kid. There would be a dramatic play or a questionable call, and the announcer would say “Let’s go to the tape”. Instantly, the previous play would be on the screen and analyzed by the commentators and the millions of people who were tuned in. They would collectively be looking for conclusive proof that the play went one way or the other, and the outcome of the review had the power to change the course of the game.

Every morning, I go to the tape. But instead of reviewing the result of a questionable call, I’m scrubbing the recorded video from my son’s monitor to see if he had a seizure. I’m looking at clips from each time the camera detected motion to see if it was caused by normal turning over or if a seizure had taken control of his body.

More often than not, there is something to see. Even though his seizures are short, most are easy to catch. There is an unnatural silence in his room as his breathing stops and his body stiffens. A few seconds later, the loan moan fills the room as his body jerks and his arms move.

As I watch the video, I’ll see myself enter the frame. I’ll sit on the edge of my son’s bed, rub his back, and try to comfort him. Once the seizure ends, I’ll help him get back into the middle of his bed, cover him with a blanket, and walk out of the camera’s view, heading back to bed myself.

I’ll also see more subtle seizures. Ones where there wasn’t a sound. Ones where I didn’t wake up. Ones where I didn’t come into the room to comfort him. These are the ones that remind me of reviewing a play from a game. I’ll watch the same clip multiple times. I’ll slow it down. I’ll turn up the sound. Did the player come down in bounds? Did my son’s body stiffen? Was the play offsides? Did I hear the faint sound of a seizure?

The difference is that I’m not trying to make a decision on a play that will determine the winner or loser because there isn’t one. This is a match that may never end. Instead, it feels like I’m using these reviews to determine the score and, most nights, epilepsy gains a few points.

But I’ve got a lot of other tapes to review, as well. Videos of my son playing baseball, and laughing, and doing a lot of things that he couldn’t do a few years ago when epilepsy was controlling the game. So if we get points every time my son does something he couldn’t do before, or just something amazing, then we’re racking up points every day.

And we’re ahead.

By a lot.

 

Unnatural Times

Every morning, I like to sit near the window of our condo and look out on to the streets of Philadelphia. I watch as the empty sidewalks start to fill with people. The roads fill up with cars. Food carts appear on street corners. Lights turn on in the office buildings. Mornings are when the city wakes up.

Usually, on weekends, the process is a bit slower. It takes longer for the sidewalks and the street to fill. But eventually, they do, and the city finally comes to life. Not lately, though. There aren’t as many people. There are fewer cars. And not as many lights in the office buildings are turning on.  Now when I look out the window, the city hasn’t been waking up. It’s a perpetual Sunday morning that lasts all day, every day.

Being stuck inside the house is unnatural. We aren’t used to the confinement. We are social creatures and miss those connections and contact with the outside world. Our bodies and our minds start to panic, which is only exacerbated by the fear and uncertainty of the spreading virus. It’s unnatural, but, for me, it also feels familiar.

A few years ago, my son was in a bad state. He was still seizing a lot, and the angry side effects of the medicine he was on came out as rage. He was isolated at home without social contact; no school, no friends, no playdates. My wife stayed home with him, equally isolated. A similar fear and uncertainty blanketed our lives, not knowing how long these conditions would last or, worse, whether they would ever change. Maybe that was going to be our life now, forever.

We couldn’t plan anything. We couldn’t really go anywhere. So we lived in a dark apartment, watching the city through our front window, hoping for something to change. That lasted for more than a year. Eventually, we found better medication and a nanny to help. We got therapy and found our way back to each other. But it was an agonizing and traumatic time, and our current isolation is triggering those painful memories.

Before “social distancing”, things had been better. My son was going to school for half days, but every day this year, which he couldn’t do before. He made a few real friends. We were looking forward to baseball season, bike rides, and summer. But now we find ourselves, along with the rest of the world, wondering what comes next.

It feels like another test of our strength and capacity to adapt to another “new normal.” Fortunately, we’re starting from a better place. My son is doing better. Our family is stronger. And we know that because we made it to the other side of those dark days years ago that we can make it through these challenges, too.

These are unnatural times. But as parents of children with epilepsy, we are no strangers to unnatural times. Hang in there. Remember to be kind to each other. Remember to make room for yourself. And we will make it through together.