Maine 2.0

For the second time during the pandemic, we’ve run away to Maine.

I’m starting this post on our first morning in the cabin. My son is at the dining room table, doing virtual school with my wife. The fog is starting to lift, and I can see out the window through the trees and across the secluded cove of fresh seawater that salts the air.

It’s surreal. Many years ago, my wife and I talked about living a more nomadic life, traveling around and doing work and school wherever we happened to find ourselves. I would work in a kitchen somewhere in Europe, and we’d drink wine and play music at night. Back then, I cooked more adventurously, and we drank, and we played more music.

But over the last few years, the practical part of me that optimizes for safety and comfort, when given a choice between planning that future or turning it into only a dream, chose the latter. I needed a job with good insurance. We needed to be near a hospital and a pharmacy. My son needed special accommodations at school. In a world with unpredictable seizures, changing medications, and endless speed bumps, we needed stability anywhere we could find it.

Over the years, as my son’s condition started to normalize, even if not stabilize, we’ve started to venture out further. At first, it was back to Colorado or Florida, places where we always had the security of friends and family around us. We’d go for a week at a time to the Poconos, still only a few hours drive back to the city and its services.

Our first big trip was to Hawaii, where we stayed for almost two weeks. Even though we were with friends, it was the first time since the seizures began that I felt like we were disconnected from the constant watch and care of our safety net. Sure, there were seizures on the plane and in the hotel and on the beach, but we embraced the adventure.

The next big trip was to Panama. Again, we went with friends, but this time we spent part of our time deep in the mountains away from any major city, and the other part on an equally isolated island. There were seizures on the plane, and in the mountains, and on the island. But I felt even more disconnected there but still safe.

When the pandemic started and we knew that I was going to be working remotely for the foreseeable future, we decided to pack up and head to Maine for a month. It was just us in a small house in a remote town along the ocean, but I felt like we were actually living in another place. The seizures followed us there, too, but I was working, my son continued his school work with his tutor, and my wife was writing and working. We visited the grocery store, cooked, found a pizza place we liked, and continued our lives, just in a different place. Now, we’re doing it again.

I don’t know if that truly nomadic lifestyle will ever be in the cards for us. I hope to embrace more working from home, assuming working from an office is ever a thing again. But that voice in my head is also whispering words like stability, and doctors, and pharmacy. It’s telling me that the world is going to get back to normal, and that a job requires an office to go to, and that we need the safety of benefits and insurance.

But it is in those moments where maybe I need to remember where we’ve been. More so, I need to look around at where we are right now. And maybe I should step outside and go for a walk and reconnect with being disconnected. And be open to a different future where everything is still possible.

 

 

The Perfect Picture

Years ago, I was really into photography. I still take pictures, especially when we travel, but I used to be a student of the art. I would read and research the science of photography, explore the styles of other artists, and spent a lot of time working with the tools that turned pixels into photographs.

I experimented with different subjects and techniques. We lived in Colorado, so beautiful landscapes were right outside our door. I also took headshots and pictures of performances for my wife’s musical theater school. I had a few images published and got to photograph one concert with an official press pass. But a special treat would be when friends would ask me to take pictures of their families.

I loved capturing those images and still smile when I see a picture I created years ago handing on their wall. But it was stressful. I felt a lot of pressure to take a picture that they would love and not disappoint them. I wanted every image to be worthy of hanging on their wall, but so much needs to go right to create that perfect picture.

Some things I could control. After a lot of trial and error, I created a checklist to remember to charge batteries, format memory cards, check the camera settings, clean the lenses, and other technical items to get ready for the shoot. We’d pick a location ahead of time, and the right time of day to try and get the best light. And we’d talk about clothing to have a few options ready that would look good on camera.

There were things that were outside of my control. A change in the weather or an unforgiving wind. An irritable, teething toddler hopped up on ibuprofen. But if you can take care of the things that you can control, you can mitigate the uncontrollable things and still have really good odds for things to line up for that perfect shot.

When we were staying in Maine earlier this summer, we attempted to take our own family pictures. I went through the checklist I keep in my head to get my camera ready. We all got dressed in our “Summer Maine casual” attire that included the nicest of the Marvel T-shirts that I packed, since I only packed Marvel T-shirts. We primped and preened. And then we headed to the beach.

The lighting wasn’t quite right, but we found a few locations that would work. I took a few pictures, but it was clear that my son was having a hard time listening and staying focused. We took a few more pictures, but he seemed to be somewhere else. We tried to push through, but eventually we were all too frustrated to enjoy the process and it was showing up in the pictures, so we stopped.

Back in the house, my wife and I were reflecting on what happened, and why this seems to be a regular thing. She pointed out that we didn’t set ourselves up the right way. We should have known better than to ask him to do something that he wasn’t capable of doing because we didn’t set him up to be able to do it.

She was right. We know that if we need him to be present and capable of doing something that requires a lot of focus and attention, we need to prepare him. We need to give him his meds at the right time, eats at the right time, and that he gets enough sleep. We need to balance cognitively difficult task with “brain breaks”. We need to structure the day and our activities in order to succeed. Just like my camera checklist, we have one for our son that removes as much uncertainty as we can from a complex condition. We have to control what we can because there is so much about his condition that is out of our control.

Looking back, we didn’t do that. I ran through the checklist for the camera, but we neglected to do it for our son. We let our guard down and took for granted that we had a few good days, so we thought we could coast into success. But that’s not the way it works. And the result was, rather than a fun experience, that we all felt disappointed and frustrated.

We spoke with our son later that night and apologized for our part in that frustration. The last thing I wanted was for him to take all the blame and carry any shame from that experience because of how we might have reacted. He is getting older and he is capable of taking responsibility for his actions, and he said he was sorry, too, which was amazing. He understood that we all made mistakes and, most importantly, that, no matter what, he was wonderful, and supported and loved.

 

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.