Dave, Author at Epilepsy Dad

National Walk For Epilepsy 2018

Last weekend, we participated in the Epilepsy Foundation National Walk for Epilepsy in Washington, D.C. It was so different from the first time we attended two years ago. That year, we were only a few months in to our diagnosis and had only recently gotten out of the hospital. We were physically and emotionally drained and couldn’t even complete the shorter “fun course”. While it should have been comforting, I felt overwhelmed to being surrounded by so many people supporting a cause that we knew little about and were thrust in to.

This year was a completely different experience. We knew other people at the walk. We met some online friends in person for the first time. We saw people from our local Epilepsy Foundation affiliate. And there was a sense that this really was our community of people trying to make life better for my son and other’s like him.

It was a lot for my son to take in, too. He was excited when we got there, but the more people we talked to and the more he was exposed to the energy around him, we could see him start to shut down. Right before we started the walk, he slipped in to his “wonky place.” His eyes glazed over and he tried to run away, but I help him and sat with him long enough for him to calm down. He reluctantly started the walk, and I could feel that we were teetering on the edge of a full meltdown. But a quarter of the way in, we passed the Washington Monument that he recognized from the Spider-Man: Homecoming movie. I started talking about the movie and, a few minutes later, he started engaging in the conversation and I could see the tension leave his body. By the end of the walk, he was sprinting across the finish line to officially complete our first National Walk.

If you haven’t done either the National Walk or an event from your local Epilepsy Foundation affiliate, I encourage you to try it. The first one might be overwhelming, but it’s important to know that there are others like you out there, and that there are people and companies that are working hard to improve the quality of life for people living with epilepsy. We are involved with the Epilepsy Foundation of Eastern Pennsylvania, so if you live in that area, you’ll know at least one family at the event, which can make it easier. But if you don’t, go to at least one event and you’ll start building those connections to other families and it can turn a sometimes isolating condition in to one of community. You are not alone.

Castaway

We went to Florida recently to visit friends and to see our family. My son’s nanny from when things were at their worst had moved to Miami with her family. On our last few trips, we flew in to see them before heading over to see my parents.

In addition to her understanding our son’s history, they are just good, generous people who are part of our family now. They moved away just over a year ago and have established themselves in their new city. They have a child of their own now that she takes care of and her husband has a good job. We stayed with them at an adorable house they bought not far from the city. They took us to the beach and to different eateries nearby. We got a glimpse of their new life in their new home.

One night while we were down there, my wife started crying. She said she felt like we were stuck in the same life while everyone else’s lives move on. I felt the same way.

Maybe it was the tropical air and the palm trees, but I thought of the Tom Hank’s movie Castaway. In it, the main character survives a plane crash only to be stranded on an island in the middle of the ocean. Years go by until he is eventually rescued. When he returns to civilization, he finds that the world has moved on without him. Technology has advanced. Friends have moved on with their own lives.

The world is moving on without us. Our lives may be slightly better or slightly worse in some areas compared to previous years. I have a new job and we have a new house but, as a whole, it feels like the same life. We’re still struggling with a sick kid, with seizures, with behavior issues. We’re still dealing with school, and doctors, and appointments, and therapies. We’re still making food for the ketogenic diet and picking up prescriptions at the pharmacy.

Maybe it feels this way because we’re still in the middle of it. It’s hard to feel like you’ve moved on when you aren’t able to let go of anything from the past. When everything is present, there is no moving on. When you wake up and have the same day over and over again, you’re like the character in the movie, stranded on an island while the rest of the world moves on without you.

The Macro and The Micro

There is a difference between the macro and the micro. The macro is the big picture. It’s the view of our life from the outside. It’s filled with generalizations. The micro is our life on the inside. It’s the day to day, minute by minute decisions and occurrences that are missed when you only see the big picture.

The macro is the view from our social media feed. It’s the images of Hawaii and hockey games, Globetrotters, and Florida. It’s the smiles and the perception of a normal family living a normal life.

The micro is the structure and planning that goes into every day that allows those experiences to happen. It’s the fallout after a game when he is too tired to regulate his behavior, or the next day when he is so tired that his routine is off and we have to start over from scratch.

The macro is seeing him leave the house with a backpack on his back heading to school. It’s math, and reading, and recess and lunch. It’s a science project or a school play.

The micro is how difficult school is for him and how he only goes for a few hours a week. It’s seeing the extra hours he puts in every day doing schoolwork and how hard he has to work trying to keep up with his peers. It’s falling behind socially and trying to make up for it in other ways. It’s 504 and IEP meetings, and lawyers to navigate a system that was not designed to support his needs.

The macro is a good job with the cool job title and working for a huge corporation. It’s the view from the tower.

The micro is the stress of a difficult job and wanting to succeed there while so much is happening at home. It’s traveling for work and being thousands of miles away, worried that I will be needed. It’s the pressure to constantly perform to keep it all together and an inability to turn it off. It’s the strain that puts on relationships. It’s the fear of it all tumbling down and losing it all.

The macro is the family living in the city, hip and trendy in a condo in the sky.

The micro is why. It’s living in the city to be closer to the hospital and the endless appointments. It’s needing to be closer to a public school that has to take him, whether they can support his needs or not. It’s removing as much maintenance from our lives so that we can fill the moments between appointments with joy instead of chores.

The macro is a kind, generous, happy kid that makes the world around him smile.

The micro is the lonely, sad, tired kid that struggles every day. It’s the kid that takes medicine three times a day that causes depression and behavior issues. It’s the kid that doesn’t have many friends and struggles to learn how to interact with the ones he does have. It’s three years on an impossible diet. It’s having things that he loves taken away because they were meant for a different life. It’s trying to figure out what is meant for this life.

The world around us is filled with these different perspectives. It’s a choice to see the world from above or to get down on our hands and knees to inspect what lies below the surface. Macro is the aggregate. Micro is the individual. Which one you see depends on where you are and which lens you choose to use to see the world.