epilepsy Archives - Page 27 of 84

Where Epilepsy Can’t Find Us

For the last few weeks, we’ve been temporarily living in Maine.

I love living in Philadelphia. But between being confined to the close quarters of a condo and the current tension in the city, we decided we needed space. While we are all working from home, this is also a rare opportunity where home can be wherever there is internet, and that includes the Pine Tree State.

Whenever we go somewhere new, there is a part of me that wonders if it will be the place where epilepsy can’t find us. I wondered when we went back to Colorado. I wondered when we visited my family in Florida. But epilepsy found us in those places. I wondered again when we traveled further…to Hawaii…to Panama. But epilepsy found us there, too.

Still, as we took the 10 hour drive from Philadelphia, there was a part of me that still wondered. It wasn’t a good sign when my son drifted off to sleep in the back seat that a seizure work him from his nap. But we weren’t yet in Maine, though, so there was still hope.

As we pulled in to the driveway of the house we rented, I had a good feeling. The house was on a peninsula, surrounded by water on three sides. There were steps down to a rocky shore from the front of the house and a path down to a big, sandy beach from the back. There was a big yard for baseball, and trees blocking the view of any neighbors. We were secluded. Hidden. The sun was out. There was air…cool, salty, fresh air. Our getaway had everything we were looking for, and maybe the right ingredients to keep any seizures away, too.

When the first seizure came the next day, I chalked it up to exhaustion. The long drive and the late night exploring the house were the likely causes, and that shouldn’t be held against Maine. The seizures the next night were obviously caused by the long day spent in the water, fishing and finding shells and crabs. Our bodies just weren’t acclimated yet, so those seizures shouldn’t count, either.

But by the third day, and the fourth, and most days since, I haven’t been able to explain away the seizures. They happen after we are outside on a sunny day or after relaxing inside on a wet, foggy day. They happen after we go exploring and after we hang out watching a movie.

They happen because my son has intractable epilepsy.

Wherever we go, we won’t be able to hide from epilepsy because we take it with us. We pack it up like the bottles of seizure medication and the special ingredients for my son’s ketogenic diet. It finds room in the car no matter how little space is left after we tightly pack our belongings.

But even though I want to write a post like this every time we go to a new place, trying to hide from epilepsy is not the reason we travel and have adventures. We do them because our son is a fearless explorer. We do them because we can. We do them because we won’t let epilepsy and seizures limit the experiences we can give to our son.

There is nowhere we can go where epilepsy can’t find us.

But we will not let it stop us.

Different Dreams

I don’t remember ever having dreams of what I wanted to be when I grew up. I had friends who wanted to be cowboys, or baseball players, or astronauts when they were children. As they matured, they wanted to be doctors, or lawyers, or police officers. And I once knew a person who dreamed of being a circus performer, which might seem weird, but I knew him in a city that had a “clown college.” But I don’t remember having dreams of my own. I knew someday that I would be older, but I didn’t know what I wanted to be doing when that day arrived.

After we moved to Florida in my mid-teens, I got it in my head that I wanted to be a marine biologist. It seemed like a good fit. I spent most of my summers when I was younger in the water, catching fish and crabs. I wasn’t afraid to pick up the random sea creatures that I’d come across. And, most importantly, a girl that I had a major crush on also wanted to be a marine biologist and she agreed to be my lab partner because of this newly developed common interest.

I would have made an excellent marine biologist. Ignore the fact that I won’t go in water that is below 80 degrees. Ignore the fact that I’m more of a sinker than a swimmer. Ignore the fact that I don’t like being cold and wet. Ignore the fact that I get seasick. If you ignore all the things that are in the job description that involves being in or on the water, I would have been great.

So, I signed up for a marine biology class in high school and sat across the room, watching my romantic interest instead of the fish. But she was watching the fish, but also started seeing one of the popular kids. As a result, my interest in her began to wane, and, coincidentally, so did my interest in becoming a marine biologist.

My son, however, has known since he was born that he wanted to be a hockey player. He and I started playing hockey together before he could walk, and his love for the sport has only grown. Over the years, he’s added careers like a baseball player and professional video gamer. But they have been “in addition to” never “instead of.” Even now, at ten years old, he’s waiting for the call from the Colorado Avalanche or the Vegas Golden Knights to tell him they need him, and we’ll be on a plane.

To help him pursue that dream, I took him to skating lessons starting when he was two. At four, we added the hockey classes. The look on his face when he got his first official jersey is etched in my mind.

But then, just before his fifth birthday, he had his first seizure.

The first seizure didn’t adjust his course, but the second one did. And the third. And the three months in the hospital battling status. And the exhaustion and side effects of the medication. For more than two years, we struggled to get him back on the ice. We’d play hockey in the basement, but the level of exertion necessary to be on the ice and playing hockey was too much. We’d try a few classes, and his body would shut down for days. During one class, he had a seizure. The fighter that he is, he got right back up and tried to participate, but we needed to keep him off the ice for his safety until we could figure something out.

We added tee-ball and baseball since those sports were easier to manage breaks and his level of effort. He is good at baseball, and he likes it, but he keeps asking about hockey. He has a friend who has been playing for a few years now, and I can hear it when he talks about his friend that he wishes it was him on the ice instead. But it isn’t. And the reality is that I don’t know if it ever will be.

The reality is that my son’s seizures are still not under control. The reality is that the more he pushes himself, physically and mentally, the more exhausted he gets, and the more seizures he has, which perpetuates the cycle. No one can tell us if that will ever get any better, so we’ve tried to structure his life in a way where he gets the most out of it while minimizing the impact of his epilepsy. But the thing that he loves the most, the thing he’s dreamed about all his life, is the thing we haven’t figured out how to give back to him.

I never had dreams when I was younger, so I don’t feel any remorse or regret for where I wound up. I think I am where I am supposed to be, with the family I love and a job in a field that I’m good at and find rewarding. Looking back, the choices that I made, even subconsciously, all aligned on a clear path to here.

I believe the same will happen for my son. He will be where he is supposed to be. But I’ve always wanted to give him every opportunity to succeed, every opportunity to explore every possibility, and to feel supported every step of the way. Part of my purpose is giving that to him, and doing everything I can to help him achieve his dreams.

It breaks my heart to think that I may need to tell him that he needs to have different dreams.

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.