epilepsy Archives - Page 59 of 84

Talking To My Son About Epilepsy

Imagine we are sitting at a table across from each other. I’m trying to teach you a complicated concept. Except I don’t understand the concept, either. And I’m also trying to teach it to you in another language. Except neither of us speaks that language. And the room we are in is pitch black.

That is what it is like to talk to my son about epilepsy. It’s a topic that I didn’t have a reference for until it entered our lives. I’m learning what it means to be the parent of a child with a disability, but not what it means to have epilepsy. My son has a different perspective. He knows what it feels like to have epilepsy, but he doesn’t have the words to always share what he is going through. He doesn’t remember his life before seizures enough to describe the difference. So we fumble as we try to connect and create a shared experience.

Occasionally, I’ll be able to pull something out of my growing knowledge bank to share with him. A few weeks ago, we strolled through Caesar’s Casino in Atlantic City. We passed a statue of Julius Caesar and I mentioned that he ruled the Roman Republic. I also mentioned that he had epilepsy. “He had epilepsy and he ruled the world, ” I said, “so you can do anything that you want to do.” I skipped the part about Julius possibly suffering from migraines and not seizures. The opportunity for bonding was more important than proven historical accuracy.

There are flashes of a connection, but not enough of one. Epilepsy and seizures will affect him for the rest of his life. History lessons might be inspirational, but they don’t explain what he is feeling and why. They won’t build his epilepsy vocabulary. They might keep him hopeful, but they can’t predict what it will be like for him in the future. Nothing can.

As a father, it makes me feel helpless. It’s my job to protect him. It’s my job to teach him the ways of the world. I think that if I do more research, if I learn more facts, that I’ll somehow be able to forge a path for him. If I can’t make him better, I at least want to make his life easier. But without knowing what he is going through, I’m never sure I’m doing the right thing. What I can do, and what helps me balance my frustration, is loving him and making him feel secure.

Sometimes, there is light in the room. I’m able to see how brave he has become when he tries something new, talks to people, or jumps fifteen feet into a ball pit. I see how hard he works to do basic tasks and how much harder he has to work to do the things he likes doing. There is enough light to see that our family is around the table, trying to connect with each other. We’re still not speaking the same language, but there is enough light to see that we’re in this together.

Throwing It Back

We walked along the shore of Atlantic City. The beach was quiet with only a few other souls in view. The sun warmed the winter air to a comfortable temperature and cast stark shadows of the shells on the sand. The seagulls circled silently around us riding the current in the air. The waves rhythmically pushed themselves ashore. They darkened the sand to an almost black and erased the footprints that my son had left moments before.

That morning along the beach, my son took to launching enormous clam shells back into the sea. The inhabitants had been the unwilling dinner guests of another sea creature or one of those circling seagulls. Now, their empty shells laid scattered along the shore. I watched as my son scurried along the sand, finding the biggest ones, and brought them up to the water’s edge. The ocean had given up the shells to the land and now my son was sending them back.

Since my son was young, he has always liked to throw things in the water. He liked to see how far he can throw something against the limitless backdrop of the ocean. There were no walls to bounce off, no cars to avoid, only infinity against which to test his strength. After he hurled an object into the sky, he would track it through the air until it reached its destination. Would it skip or would it splash? Either was acceptable, as long as it was far. On the really good ones, he’d turn to me and ask if I saw how far it went. Of course I was watching, I told him, but he was already looking for his next projectile.

As I watched him throw shell after shell, I thought about the things I’d like to throw into the sea. I’d start by taking his seizures from him. Like a piece of paper, I’d crumble them up into a ball until they held their shape. I’d grip it like a fastball and wind up with enough torque that, when I let go, the seizures would disappear over the horizon. I’d do the same with his medicine and their side effects. His learning and attention issues would be the next to go, followed by his fatigue and ataxia. Over and over, I’d crush these afflictions into dense spheres and throw them with all my strength. Whether they skipped or splashed, I only want them far away from my son, somewhere at the bottom of the sea.

Things That Matter

I’ve lived my life in a bubble.

When I was young, my mother worked hard to provide for my sister and me, and I remember that struggle. But when my stepfather entered the picture, life got easier. We did fun things. We camped every summer on the beach. We had a house, and food on the table, and an Atari 2600. We weren’t rich but I always had everything I needed.

After high school, I went out on my own. I lived my life largely without incident. I joined the Army “between wars”. I went to college debt-free funded by the GI Bill and my employers. I got a job in an industry that pays well and provides affordable insurance and other benefits.

Even though I have traveled the world, I always felt isolated and unaffected by it. Wars were fought by others and were very far away. Elections were about issues that I had no reference for. The rhetoric was noise in a system designed for winners and losers instead of compromise. The talking points and issues didn’t relate to me so, even though I voted, I didn’t really participate. I stayed in my bubble and carried on.

They say that having a child changes you. When my son was born, a tiny hole opened in my bubble. It was large enough to let in more joy, and fear, and hope than I ever thought possible. At first, it was overwhelming. I looked through that opening and saw the world, in many ways, for the first time. The world that I would leave for my son was cruel and selfish but hopeful and changing. Instead of opening the hole more, though, I pulled my family through it and the bubble again closed to protect us.

When my son was diagnosed with epilepsy, the bubble began to disintegrate. I could see it happening. The outside world became clearer as the layer of protection around us grew thinner. Even with health insurance, the medical bills added up. There were “maximums” and things not covered by our plan. The “pay later” designation of our plan lived up to its name. I finally had a reference, so I wondered what this was like for someone with no insurance at all.

Then when my son was finally able to return to school, he was going back in as a child with special needs. If you haven’t gone through the process, there is no adequate way to explain it. The fear and frustration that comes from trying to prove to a system that sees your child as a financial liability that he needs and is worth the extra resources is anguishing and exhausting. And you get to redo it every year, for every grade, until they hopefully graduate.

Eventually, the bubble that I had lived my whole life in burst under the pressure from the outside world. Now, I am paying attention. Now, there are things that matter.

There are debates about changing health care laws. That matters. My son has a disability. I have to think about what it will be like for him to try to get insurance with a preexisting condition like epilepsy. Could he even get it if the laws change? Could he afford it? Or is he destined to rack up medical bills for the rest of his life and struggle financially?

My son also has learning difficulties. At school, he has an aide and has special accommodations to help him. These services are expensive and privatizing public education means my child is a drag on the bottom line. Even the placement of the bar these services should help him reach is under debate. Should these services help him keep up with his peers or provide “just enough” to make him functional. That matters, too.

With the bubble gone, I’m looking beyond myself. There are other important issues that affect the people around me. It is not a far leap from how we treat people that are different because of where they come from or what they believe to how we treat people that are different because they have a disability. History has shown the consequences of ignoring that connection. Intolerant regimes persecuted their own disabled citizens alongside the outsiders they deemed unworthy.

So, when my coworkers staged a walkout to protest the immigration ban, I joined them.

I would have gone anyway. Many of my coworkers and friends are directly impacted by the ban and I wanted to support them. But I went for myself and for my son, too. Intolerance of any kind is dangerous, is not who were are, and does not represent the world that I want my son to inherit. That matters most of all.

It’s time to embrace this life outside the bubble. It’s time to believe in something. It’s time to pay attention, and it’s time to take action on things that matter.