The Year That Was 2020

Let me start with the understatement of this brand new year:

2020 didn’t go according to plan.

The pandemic changed our lives…our world. So many people have lost their lives. I have friends who lost loved ones to the virus. I know people who have lost their jobs. We were forced into isolation and lived without physical connections. We lived in fear of the virus and of each other.

The deaths of too many of our Black brothers and sisters shone a light on the pervasive racism that continues to exist in our country. We watched our city express its frustration and desperation for change on the streets, as did many others across the nation and around the world.

The election continues to demonstrate the divided nature of our country. The same tools that we used to connect with each other when we couldn’t be together also spread dangerous conspiracies that endangered lives and pulled us apart.

The pandemic didn’t create these things. We were already disconnecting from each other every time we checked our phones while spending time with others or in the middle of a conversation. Racisms and its damaging effects have existed forever. And our divisiveness goes back to the start of our country.

2020 wasn’t a dumpster fire because it created new problems. Instead, it is because it stoked many separate, smoldering problems. The embers from those fires were carried far and wide, where they were able to gather enough fuel to grow and the individual fires started to connect into a massive blaze.

The fire has done so much damage. This is usually the part of a post where I would write how fires in a forest clear the way for change. I would mention how the nutrients from the dead trees are returned to the soil and how those nutrients and exposure to sunlight encourage new growth. But I’m having a hard time believing it myself.

Because of the effects of my son’s epilepsy, I’ve spent a lot of time over the last few years standing among the ashes. When you’re standing among the ashes, it’s hard to see anything other than the damage that the fire has caused. It’s hard to believe that things are going to be any different when it takes so long for those seeds to sprout and become a new forest.

The turning of a calendar isn’t going to make racism go away. It’s not, nor is a new president, going to bring our country together. It’s not going to return our lives to what they were before, even if we wanted to pretend that these problems didn’t exist before the pandemic.

Change doesn’t come just from the flipping of a calendar or the passing of time. Change comes from wanting things to be different. Change comes from believing that things can be different. Change comes from action.

We have to clear away the ash and encourage those seeds to grow.

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.

 

 

Yes, And…

We didn’t ask for this. One day, we woke up the same way we always did, and that night we were walking back to our hotel room from the hospital in a strange city after my son had his first seizure.

That was six years ago.

For many of those years, I fought what was happening. I didn’t want it, and I thought if I resisted it that it would go away. I looked at what was happening, and I led with “no.”

That “no” manifested as resentment and anger. I wasn’t angry at my son. I was angry at epilepsy. I was angry at seizures. I was angry at the medication and the side effects. I was angry at the universe for doing this to my little boy. The seizures, the meds, the side effects. The impact on his future.

Even though I wasn’t angry at my son, based on the way I was acting, to him, it probably felt like I was. I worried that he was internalizing what I was projecting. For years, he walked around saying, “I’m sorry” every time I corrected him or asked him to do something.

I tried to change how I was showing up for him. Instead of fighting what was happening with a “no,” I moved on to a “yes, but…” I admitted that epilepsy was happening, but made excuses so that I wouldn’t have to give in to that reality fully. “Yes, this is happening, but someday it won’t.”

The “but” in “yes, but…” wasn’t about giving up hope. It was about a lack of acceptance. There was still that resistance that got worse as things with my son got better. Instead of a bump in the road, every setback, every new symptom, every increase in seizures felt like falling off a cliff.

That falling, too, surfaced as frustration and resentment. I had little tolerance when things weren’t right. I would snap when the smallest thing went wrong. I thought that I could correct our way out of this if I could get everything perfect. I kept trying to control and change the situation into something that it was never going to be.

When we are no longer able to change a situation – we are challenged to change ourselves. ~Viktor E. Frankl

In the world of improv comedy, there is a concept of “yes, and…” The idea is that a participant takes what is given and adds to and expands it. Instead of “no” (the brick wall) or “yes, but..” (the resistance ), the “yes” encourages acceptance and the “and” expands.

Yes, my son has epilepsy, and he is amazing. Yes, he has seizures most days, and he also goes to school and plays baseball and loves Fortnite. Yes, we are on a different path than we thought we were going to be, and the future is full of new possibilities.

I’m not going to lie, even as I typed the sentences above, I struggled to think of the “and…” My brain isn’t wired to find the positive in impossibly difficult situations. But the more I do it, the easier it will become. The more I practice, the more my brain will automatically find the possibility.  I can’t change the situation, but I can change how I approach it and how I engage with him. Because he truly is amazing, and he needs to feel that from me.

Yes, my son has epilepsy, and I am the luckiest dad there ever was.