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.
Resilience is the ability of a person to cope with stress and adversity. It’s the “bouncing back” from difficult experiences. But what if the difficult experiences never end? How do you bounce back when it feels like the only thing you know how to do is fall?
We do a decent job on the day-to-day challenges. We bounce back from a bad seizure day. We bounce back from days when emotional regulation is harder than usual.
We have also learned to accept a lot of things. The endless medication and side effects. The ketogenic diet. The endless doctor appointment and therapies. The emotional toll that living in uncertainty takes. The lack of sleep.
But none of these things is likely to end. The seizures and the medications and the side effects and the doctors, they are all here to stay. This is our life. This is our normal. There is nothing to bounce back from.
But maybe resilience isn’t only about bouncing back. Maybe it’s making the most of it. Maybe its about finding the strength to continue on when there is no end in sight. And maybe it’s about finding something good every day even when, some days, that’s the hardest thing to do.
Resilience is accepting your new reality, even if it’s less good than the one you had before. You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try to put together something that’s good. ~Elizabeth Edwards