epilepsy Archives - Page 84 of 84

The Waiting Is The Worst Part

I spend a lot of time waiting for explosions.

These explosions come from different places and take many forms in my life. Lately, they’ve come in the form of seizures and an angry reaction to a new medicine.

Each explosion creates a new crater on the landscape in my mind as I hunker down in the bunker waiting for them to subside. The snow outside tonight makes me think of the soldiers in World War II, freezing in foxholes in the dark night of the Ardennes Forest while the Germans shelled them, destroying trees, bodies, and spirits alike. The physical damage is easy to rationalize, and to justify, and to accept. The damage to the spirit is harder to quantify, and it brings with it the wonder when the explosions will come again.

The waiting is always the worst part. Waking up to every sound at night wondering if it’s another seizure, especially when there were none the previous night. Wondering if the next episode of my child not listening will escalate in to biting, and spitting, and the horrible things that no child should ever have in their heart. Only, you know with what’s happening, that is not really your child. Except, it is. And there is nothing you can do about it except try to calm things down, and hope that it will be the last time. The last outburst. The last bad reaction.

And that’s when the waiting starts…all over again.

The Illusion Of Time

It’s 4 in the morning and I’m sitting on the couch across from the hospital bed where my son is sleeping. Sleeping, finally, after having a cluster of seizures. The first one happened while I was lying in bed next to him. A quiet grunt announced the oncoming episode; a sound that would otherwise have gone unnoticed except for my newly acquired hyperaware sleep where I listen for any sound out of the ordinary.

The first seizure lasted under a minute, followed by another, longer one. They repeated for the next two hours, various lengths with varying breaks for sleep in between. As each seizure started, I would focus on the digital screen showing an analog-style clock affixed to the wall trying to quickly find the thin seconds hand on its journey around the face of the display. As the seizure ended, I’d groggily make a mental note of the duration to pass along to the nurse. Just beyond, a team of doctors looked at the data.

Robotic, calm, precise…all the things I wasn’t when he had his first seizure.

If you’ve never seen a seizure, especially happening to your child, the first few always stretch time. For me, there was a phase of not knowing what was happening. I thought he was playing a game until he wouldn’t respond for what felt like an eternity. Then the frantic 911 call, the waiting for the ambulance, the not knowing the different phases of a seizure and when it began and when, or if, it would end. When the paramedics and later the doctor asked us how long the seizure lasted, we didn’t know. We had no reference. Our initial estimate was 10 minutes, but time in those circumstances, time is stretched and bent and irrelevant to a panicking parent. We didn’t know we were supposed to know how long they lasted, and so we made an impossible guess.

Einstein said the “Time is an illusion”, that the passage of time is a psychological human condition, not a property of the universe. I don’t know about the universe. But as a parent, I know that sometimes time moves way too fast and, at other times like in the middle of a seizure or when you are waiting for an answer as to why this is happening at all, it moves too goddamn slow.

Things I Never Wanted To Learn

In the past six months, I’ve learned about things that I never wanted to learn.

It started during a late summer thunder storm, one minute standing in the rain laughing at the lightning, the next minute seeing the first seizure. One seizure is too many, the many seizures that were to follow more than any child should endure or any parent should see.

A diagnosis. A prescription. Our boy not himself, a rage brought on by the side effect of the medicine that was meant to help him. Then a new prescription, a tough transition, but months of relief from the initial chaos.

I learned what epilepsy was. I learned that 1 in 26 Americans will develop epilepsy in their lifetime. I learned what it felt like to stand helplessly by while a parent watches a child go through something that they cannot stop and cannot take from them.

Then the ticks. A few at first, then more as time went on until they happened too often to be dismissed. A fortunate case of the flu exacerbated the ticks enough to bring us back to the doctor and identify them as another type of seizure, made worse by the medicine that we thought was working so well. More than a week in the hospital, being sent home without a definitive answer.

I learned about the different types of seizures. I learned that being sick made seizures worse. I learned that there aren’t always answers, just educated guesses and a course of action to take until it changes. From the sounds in the other rooms on the pediatric neurology floor, I also learned that we weren’t alone, and that, in many ways, we were lucky.

We rarely get to choose the challenges that are presented to us as we navigate our lives. But we do get to choose how we respond to those challenges. We can choose to face the challenge, or not. We can choose to learn the lessons and the nasty bits the come along with them, or ignore them. We can look beyond ourselves and focus on the greater plan, or we can turn inward or run away.

I never wanted to learn these things, and I certainly never wanted to learn them in this way. But I learned them because I needed to learn them. Because I’m a father of the most amazing boy that has epilepsy. And because it’s not about me.