Pandemic Life Isn’t New

In March, we’ll have been in a pandemic for two years. In those two years, the way we live our lives has changed. We live in fear of the disease, of death, of the unknown, and each other. We are more isolated. We haven’t seen loved ones in person. We’re losing our connections to our friends and each other. We don’t go out like we used to, and when we do, we’re masked and hyper-aware of the people who aren’t masked. Going out adds to our daily stress rather than relieves it. It’s safer and easier to stay at home.

It reminds me of when my son was first diagnosed with epilepsy. The world shut down so quickly once people started getting sick and dying from COVID. The same thing happened when we went from one seizure to two seizures and then watched the doctors try to save my son during our months in the neurology ward of the hospital.

We lived in fear of his condition, of death, of the unknown. We were confined to the hospital and then at home. We were isolated in a new city far from friends and family. The people we had met had to deal with our unreliable commitments and last-minute cancellations when the seizures and side effects of the medication disrupted our days. We lost our connections to those who couldn’t or wouldn’t understand what we were going through. It was safer and easier to stay at home.

Rather than focusing on the unmasked danger, our attention was on my son’s unrelenting seizures. We were on constant guard because they were everywhere. Instead of relieving stress and watching him participate in activities like other kids his age, it only added to our stress. I remember standing in as the third base coach for one of my son’s baseball games and watching him stiffen and freeze in place or drop as he had a seizure. I remember anticipating the meltdowns he would have when he was on Keppra and how it hung like a cloud over everything we did. I remember the storm and the anger and the fear and the chaos when the meltdown finally came. I still wake up multiple times at night when my son has a seizure or to look at the video monitor to check in. We started living with constant fear and anxiety long before the world heard of COVID.

In many ways, it feels like the world finally caught up to where we were. People are canceling plans after experiencing symptoms or a positive COVID test the same way we did when my son had a bad “seizure day.” Or when we were just too exhausted to follow through with a commitment. People are making efforts to stay connected to the people who are important to them and creating more space for each other when life gets complicated. That’s the same thing that happened to us as we went through our epilepsy journey, and we found “our people.” Those relationships are being tested again, but I hope we will find those people on the other side of this, too.

If we somehow manage not to destroy the world and the pandemic eventually ends, my son will still have epilepsy. We will continue to need that space and understanding because, while the world may go back to some form of normal, it will still be different from ours. But maybe this shared experience during the pandemic will create stronger bonds because people got a glimpse of what it is like to have something outside of their control have such a major influence on their lives. Maybe on the other side of this people will have more patience, empathy, and understanding.

If you look at how we are treating each other, it’s not looking that way right now. But maybe there is still hope.

Checkpoint

It’s a new year.

In video games, after you make progress or achieve an accomplishment, you save your game and create a checkpoint. It’s a snapshot of the way things are at that moment. That way, if anything happens after that point, you can always revert to the checkpoint. Everything before the checkpoint already happened and can’t be undone, but anything that happens after the checkpoint becomes volatile until the next checkpoint is created.

There were so many changes and developments for our family last year. We started last year by adding my son’s service dog to our family. After almost 20 years with the same company, I decided to leave and take a different job at a new company. After 7 years of struggling with the school system, we found a school that is a better fit for my son. Because of that, after 7 years of living in the city of Philadelphia, we also moved to the suburbs.

Most of last year was about those changes, and for most of the year, they felt like changes in transition rather than an end state. As we came upon the new year, I wanted to shift that mindset from “in transition” to “this is the way things are.” I wanted to create a checkpoint that solidified those changes in a way that allowed us to look forward and build new things on top of the old and create new experiences from that point in time.

Of course, the checkpoint includes the both the good and the bad, and last year wasn’t all good. It never is. My son still has epilepsy. We are still very much in the middle of a pandemic. The planet and its people are continuing to degrade. We continue to make choices that hurt each other because we’re too selfish or ignorant or malicious. We still need to be right. We still need to be justified. We still need to win. Or maybe we’re just too hurt ourselves. People are messy.

That pain is part of this checkpoint, too. Some of it is harder to leave behind and accept as “facts from the past” because it seems determined to infect this year, too, and influence the volatile nature of the present and future. As much as the hope is to leave the hurt and the actions and the trauma in the past, it’s hard to ignore their echoes that exist in the present.

A checkpoint also means you can’t go back. You move forward. You can do things differently from that point on, but you can’t go back and undo what has already been done. That’s the risk of creating one. But in life, we can’t go back. Wishing we could go back and do it differently or make different choices is focusing in the wrong direction and prevents us from accepting what is and focusing our attention on the only direction we can actually influence.

Forward is where we have choice. Forward is where there is possibility. Forward is where there is a chance to heal. Forward is where there is intention. Forward is where there is hope.

It’s not a matter of letting go – you would if you could. Instead of “Let it go,” we should probably say “Let it be”.

John Kabat-Zinn

Trying Something New

Shortly before the year started at my son’s new school, we received an e-mail announcing that they were recruiting for their soccer team. When we mentioned it to our son, he was excited, so we signed him up.

On the first day of practice, I took my last meetings from the bleachers to check in on my son. Soccer practice was after a full day of school, which was also something new for him, so I wanted to make sure that he wouldn’t push himself past the point of exhaustion.

The team was a mix of kids who had never played soccer before alongside seasoned veterans who ran circles around the other kids. My son was in the former category. I could tell there was a lot of new information being thrown at him, but he hung in there. When practice was over, I gave him a high five, and we headed home.

That night, as I was putting my son to bed, we talked more about his day. When the topic of soccer came up, he said he was excited but also very tired, adding, “maybe I’ll skip soccer tomorrow.”

As we talked more, it was obvious that the full day of school and soccer practice was physical and mentally draining, but there was more to it. Soccer was something new, too, and he wasn’t good at it yet. He was feeling nervous and insecure, especially since one of his friends on the team was much better than my son.

It’s easy to get excited about something new. Still, sometimes that excitement only carries you up to the point where you have to do the new thing: signing up for a new activity like soccer, moving to a new location, or changing jobs. But when you are standing on the side of the field, about to put in an offer on a new home, or reading a job offer, that’s when the fear and uncertainty creep in.

What if I’m not good at it? What if someone else is better? What if I get rejected? What if I make the wrong choice? What if the new thing is worse? What if I miss out on something better? What if I don’t deserve this?

Those voices in our heads that question our choices and our worthiness get louder as we get closer to acting on that excitement. They thrive in uncertainty and fill in the gaps between what we know and what we don’t know yet with stories of fear and doubt. They don’t want us to put ourselves out there. They don’t want us to fail. They want to keep us safe. But they can also keep us from something better.

I look at my own life and how many times I was afraid to start something new. I think about the experiences I would have missed out on had I not taken the next step.

I shared with my son stories of when I was afraid or uncertain. I told him how I was nervous when I joined the Army, and the first time I played drop-in hockey in the city, even though I didn’t know anyone. I told him about getting on stage to give a presentation, and how I still get nervous when writing a post for this blog. I told him how I wasn’t sure that I could do any of those things, just like he wasn’t sure about soccer. But, especially when it is something that you want to do, sometimes the hardest thing is taking that next step.

Not everything went the way I thought it would or wanted it to, but I can look back and be proud that I took that next step. I can be grateful for the experiences that I’ve had. And I can use those experiences as a catalyst the next time I face uncertainty, insecurity, and doubt.

“Let’s see how you feel in the morning,” I said. “We shouldn’t make any decisions when we’re this tired.”

“OK, daddy,” he replied and turned to the side and closed his eyes.

The following day, he came down for breakfast, already dressed and ready for school.

“Good morning, daddy,” he said, pointing at his socks. “These are soccer socks because they are long like soccer players wear.”

“I see that,” I said. “How are you feeling about playing today?”

“I’m excited,” he replied. “I think I was just tired last night and a little nervous, but I’m ready to get on the field!”

He sailed through the next few practices and now spends time between practice kicking the ball in the yard. He also learned that one of his friends in the neighborhood was on a soccer team and picked up a few tips from him.

He got through that initial fear and found a new activity that he enjoys doing. Not every story will have such a happy ending, but he would never have known unless he took that next step.

I am so proud of my boy.