Unnatural Times

Every morning, I like to sit near the window of our condo and look out on to the streets of Philadelphia. I watch as the empty sidewalks start to fill with people. The roads fill up with cars. Food carts appear on street corners. Lights turn on in the office buildings. Mornings are when the city wakes up.

Usually, on weekends, the process is a bit slower. It takes longer for the sidewalks and the street to fill. But eventually, they do, and the city finally comes to life. Not lately, though. There aren’t as many people. There are fewer cars. And not as many lights in the office buildings are turning on.  Now when I look out the window, the city hasn’t been waking up. It’s a perpetual Sunday morning that lasts all day, every day.

Being stuck inside the house is unnatural. We aren’t used to the confinement. We are social creatures and miss those connections and contact with the outside world. Our bodies and our minds start to panic, which is only exacerbated by the fear and uncertainty of the spreading virus. It’s unnatural, but, for me, it also feels familiar.

A few years ago, my son was in a bad state. He was still seizing a lot, and the angry side effects of the medicine he was on came out as rage. He was isolated at home without social contact; no school, no friends, no playdates. My wife stayed home with him, equally isolated. A similar fear and uncertainty blanketed our lives, not knowing how long these conditions would last or, worse, whether they would ever change. Maybe that was going to be our life now, forever.

We couldn’t plan anything. We couldn’t really go anywhere. So we lived in a dark apartment, watching the city through our front window, hoping for something to change. That lasted for more than a year. Eventually, we found better medication and a nanny to help. We got therapy and found our way back to each other. But it was an agonizing and traumatic time, and our current isolation is triggering those painful memories.

Before “social distancing”, things had been better. My son was going to school for half days, but every day this year, which he couldn’t do before. He made a few real friends. We were looking forward to baseball season, bike rides, and summer. But now we find ourselves, along with the rest of the world, wondering what comes next.

It feels like another test of our strength and capacity to adapt to another “new normal.” Fortunately, we’re starting from a better place. My son is doing better. Our family is stronger. And we know that because we made it to the other side of those dark days years ago that we can make it through these challenges, too.

These are unnatural times. But as parents of children with epilepsy, we are no strangers to unnatural times. Hang in there. Remember to be kind to each other. Remember to make room for yourself. And we will make it through together.

The In-Between

We were in Colorado recently and saw some friends we haven’t seen in over a year. The school year has also started, and we’re seeing parents and children that we haven’t seen all summer. In both cases, people are seeing our lives at specific points in time. They’re seeing us then and now, but they don’t see us in the in-between.

The in-between is where the highs and the lows are. It’s where the daily struggles of living with epilepsy are visible. It’s where the seizures feel like they never end. It’s where there are long stretches of days that seem impossible and where sometimes hope is lost.

The in-between is also where small accomplishments seem enormous and where incremental progress seems like leaps and bounds. It’s where not going backward is sometimes as good as moving forward. It’s where a baseball game feels like the World Series and where climbing a rock wall feels like summiting Everest.

The in-between is where every challenge and victory brings us closer together as a family. It’s where we shape our perspective. And it’s where our actions and how we approach the world shows how far we’ve come.

The in-between is where we live. The in-between is our every day.

 

 

Ignoring The Warnings

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!

When I was younger, my vision of my future included many things. It included a cabin in Maine where I would write and take my sea kayak out to harvest lobsters from my traps. It included a job where I made a lot of money doing something that I loved. It included traveling around the world, soaking up the sights and flavors of every culture on the planet. And it included a family that would share in these experiences and would enrich my life with their own experiences and dreams.

Man plans, God laughs. ~Yiddish proverb

That vision for my future didn’t include a lot of things. It didn’t include the pressure and demands of a job later in my career. It didn’t include the realities that come with having parents who are aging. And it didn’t include the curveball we were thrown when our son was diagnosed with epilepsy.

The combination of these factors created an environment that tests us every day. The relentless seizures. The widening gap between our son and his peers. The insecurity of our lives. The distance that the exhaustion and pressure create between us.

There was a movie called “The Perfect Storm” that detailed the account of the Andrea Gail caught at sea during the 1991 “Perfect Storm”, where multiple storms merged to create a super-storm. The crew ignored the warnings about the storm and made choices that took them further from safety. Eventually, underestimating the power of the storm, they turn back into it and the ship is lost.

Lately, I’ve been feeling like we’re caught in our own storm. I’ve been ignoring the signs and now we’re trapped in the middle of it and the waves are getting bigger. Occasionally, one of us will get thrown overboard but the others pull them back to safety. But there is only so long we can hold out. Eventually, we will get tired. Eventually, the ship will be lost.

I underestimated the strength of this storm. I thought we were lucky. I thought the seas would calm. I thought we had been through enough. But the storm is not done with us yet.

The warnings are in front of us.

It’s time to steer our ship to safety before it’s too late.

NEXT UP: Be sure to check out the next post by Elaine at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.