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

The Appearance Of Being Strong

We’re more than two and a half years into our journey. For a third of my son’s life, he’s lived with seizures. It’s getting harder to remember the time before them. The carefree days before hospitals and therapies seems more like someone else’s life.
Our new life doesn’t feel like it is getting any easier, even being so far into it. There is no resolution. There are no reasons. There is no consistency except for the looming threat of another seizure. It is chaotic to manage his diet, his medicine, and his appointments. There is a never ending stream of complexities in our lives. On the good days, it feels like we’re barely treading water. On the bad days, it feels like we’re drowning.
We’ve met a lot of families that have been dealing with seizures much longer than we have. I look at them as if they are the strongest people in the world, dealing admirably with such an impossible path. They somehow figured out how to manage the unmanageable. Their perspective keeps them sane and grounded and able to function in such a complex system. I’ve often wondered if we would find that place, and if someone on the outside would think the same thing about us.
I keep waiting for a switch to flip, for that “a ha” moment where the mystery of how to navigate this life is explained. So far, it hasn’t happened and it’s frustrating. I’m a smart guy. I figured out how to ride a bike, drive a car, program a computer and build a robot. But there is no pattern in what is happening. There’s nothing for my mind to organize around and to sort out. We are in a constant state of reaction with very little that we can control.
The lack of control and my inability to figure it out makes me feel like we’re not there yet. People around us use words like “strong”” and “brave” but I can’t let that in because I don’t believe it. Every seizure, every outburst, every failed medicine, every closed off path, every false hope. As much as I try to hide their impact from the outside world, it feels as if I wear them as visibly as I wear clothes. I’m only forcing myself to do what I need to do for my son and my family.
But, maybe, that’s what everyone else does, too.