Tag: epilepsy

Today Is Not Yesterday

I was recently in Colorado and had a chance to catch up with friends that I have known for more than ten years. We knew each other before I was married and before any of us had children. They’re also one of the few people who knew us before epilepsy.

We reminisced about the days when our lives were simpler and had much less responsibility. Adulting is hard. The weight of trying to focus on a career but still spend time with the kids, friends, and each other gets to be too much. We’re all exhausted and come home and want to do nothing but go to bed early.

Ten years ago, we thought it would all be possible. Ten years ago, we thought nothing would change. Now, we’re tired and depressed because we couldn’t maintain our lives from the past. So it made sense that we would be nostalgic for the time before we felt like we were failing.

But we’re not failing. As much as we thought we could, we weren’t supposed to keep things the same. We couldn’t just sprinkle on new stuff like kids or a more senior job. Our lives evolve and become something else. Today is not yesterday. It’s something new.

Instead of trying to fit my new life into the old one, I’ve tried to figure out what my life should look like now. Instead of focusing on what was important to me then, I’m trying to focus on what is important to me now and build my life around that.

But it’s hard to let go of the past, especially when there are days when the present seems impossible. Every seizure, every outburst, every time my son can’t remember what just happened…I just want to hop into a time machine and go back to before any of this happened.

I think that is what my brain is doing every time it compares today to yesterday. It’s trying to bring me back to the past. But it’s wasting energy. It’s swimming against the current instead of letting the current carry me forward. Worse, the past that it is trying to bring me back to isn’t real…it’s a distorted version made better by years of distance.

It’s not always easy to focus on the present. The present is hard. The present is real. But instead of using my energy to try to make my life what it was, I should be using it to make my life the best that it can be now. Because the present is where my life is. The present is where my family is. The present is where I am needed. The present is where I am supposed to be.

Nostalgia is a necessary thing, I believe, and a way for all of us to find peace in that which we have accomplished, or even failed to accomplish. At the same time, if nostalgia precipitates actions to return to that fabled, rosy-painted time, particularly in one who believes his life to be a failure, then it is an empty thing, doomed to produce nothing but frustration and an even greater sense of failure. ~R.A. Salvatore

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.

A Movie Script Ending

Our journey with epilepsy has the makings of a movie.

It has the time before. The time before epilepsy. The time before seizures. The time before medication, and side effects, and surgery.

It has the inciting event. The first seizure in the lobby of the arcade. The second seizure onboard an airplane. The “ticks” that turned out to be seizures that snowballed into status epilepticus and months in the hospital. The days when my son couldn’t talk or move. The night when my son was surrounded by a team of doctors trying to save his life.

It has an enemy and its name is Epilepsy.

It has the struggle. Every day. Early morning seizures. Exhaustion. Navigating the world in a fog. Trying to keep up. Learning. Behavior. Therapy. Rebuilding.

But it doesn’t have an ending. In the movies, the hero faces challenges, defeats the enemy, and returns home victorious and transformed. But we’re still on the journey and there isn’t a clear path home. Our enemy is one that he could face for a lifetime.

I started this post years ago. It sat unfinished, but I had an idea of how I would end it.

Compassionate people reassure us and say some children grow out of their seizures. We smile and nod, but its like they are watching from the seats in the theater but we’ve seen the script. We know what’s going to happen next but don’t want to reveal any spoilers. If they knew the ending, this isn’t a film that most people are going to hang around to see. Because people love a happy ending.

I wrote that at a time when things were exceedingly hard and relationships with the people around us were being tested. Some of those people are no longer in our lives. But, in spite of how I felt it was going to play out at the time, some people stayed. We’ve gone from feeling as if we were always going to be alone to cherishing what we have. Who we have.

It is true that our story may not have an ending, but it does have one more thing. The journey revealed many lessons about ourselves and the people around us. It showed us who is in our corner. The struggle forged stronger bonds. The journey has given us allies and surrounded us by our village. Our people. Our family. And we draw so much strength from knowing that we are not on this journey alone.

“There are no words to express the abyss between isolation and having one ally. It may be conceded to the mathematician that four is twice two. But two is not twice one; two is two thousand times one.” ~GK Chesterton