epilepsy Archives - Page 68 of 89

Riding The Roller Coaster

I have always loved roller coasters. My first roller coaster was the Cyclone at Riverside Park in Massachusetts. I used to go there every year as part of my elementary school’s summer field trip, and the Cyclone was usually the first and last ride of the day, no matter how long the line was. The Cyclone was an old, wooden coaster that was extremely loud and vibrated like a rocket as the wheels traveled along the metal track. It vibrated so much that it left my feet numb by the end of the ride. I didn’t care. For a few seconds in the middle of the ride, as the cars sped over a small incline, I was weightless, floating above my seat like an astronaut in space. It was wonderful.

Ever since the Cyclone, I’ve sought out roller coasters at every park I’ve been to. My wife (reluctantly) indulges me in my pursuit and joins me even when her internal voice tells her to feign a sudden case of “whatever will keep me from that ride.” My son has the bug, too, and, after years of falling short (literally) at the measuring stick at the entrance, he was finally able to ride his first “big boy” roller coaster this spring.

Full disclosure, that first ride was less than ideal. After an unexpected boost of speed right out of the gate, my son’s face smashed into the safety harness. When he stepped off the ride, blood was streaming down his face. I took him to the bathroom where he proceeded to pull out one of his front teeth. He lost the second one later that day. The Tooth Fairy came that night, but I’m still waiting on my “Parent Of The Year” plaque.

Being the tough kid that he is, a little blood and a new bite pattern didn’t stop him from tackling another roller coaster later that day. It didn’t surprise me, though. My son is pretty fearless, and he’s been on his own roller coaster these past few years.

Roller coasters are fun because they eventually end. The safety harnesses provide the illusion of danger and the thrill of the speed, bottomless drops, and corkscrew turns only lasts for so long before the cars pull back onto the loading platform and the riders are allowed to exit to the left. My son’s roller coaster is way less fun. The safety harnesses are rusty, we can’t see the track in front of us, and it doesn’t stop at the terminal to let us off.

The first four years of his life were like the beginning of the roller coaster when the cars slowly leave the boarding area and are slowly pulled towards the sky. The passengers laugh with nervous excitement as the cars tick-tick-tick their way to the apex. The ride is just starting and the anticipation continues to build, fueled by endless possibilities and carefree exploration of a limitless world.

Finally, the clacking stops and there is a brief silence as the cars are released. The potential that is stored in the cars at that height is about to be realized. Everything that has been built up comes into view as the cars tip forward and what comes next rises into view.

The big plunge. The first drop. It’s usually the scariest and the fastest. It’s the event that builds the momentum for the rest of the ride. If you’re ready for it, it can be an exhilarating, white-knuckles-holding-on-to-the-bar-for-dear-life-and-laughing-hysterically experience. If you’re not ready for it, it’s terrifying and you feel out of control. The seizure, the ambulance, and the realization that our lives had changed happened at a million miles an hour. There was no preparing for a drop from that height. It turned my stomach inside out. I was afraid and overwhelmed by a sense of panic. I wanted to get my family off the ride but there was no way to stop it.

What has followed has been a series of hills where everything seems to slow down and where we start to catch our breath before another drop where the air is ripped from our lungs as we plunge faster and further down the track. Every medicine that seems to start working gives us hope before, more likely than not, the seizures come back and we are again in a freefall. The ketogenic diet that has worked miracles for some children only slowed our ride but it wasn’t enough to stop it. And so we continue rising and falling along the track, racing through every peak and valley, we are slowly giving up on the idea that we’re ever going to get off the ride and simply, desperately trying to figure out how to keep the cars on the track and weather this turbulent, unfair, and unforgiving ride together.

Where Care Lodges, Sleep Will Never Lie

I walked from the living room to the kitchen, passing the door that led down to my son’s room. Out of the corner of my eye, I noticed a tuft of red hair sticking through the doorway. I stopped, tilted my head to the side, and saw an eye widen with the realization that the person it was attached to had just been caught.

This was the third time he was out of bed. He was restless and did not want to sleep alone. I slowly pulled open the door and asked him what he needed. “I was wondering,” he said, looking down at the floor, “if someone wanted to lay with me downstairs.” During the last few weeks, when his seizures were worse and when we were on the road, we often slept in the same bed. Now that we were home, we were transitioning back to our normal sleeping arrangements. This anxiety was an anticipated side effect. On the first night, he was so exhausted that he fell asleep in his own bed before he could plead his case for one my night in ours. On this second night, though, following a long afternoon nap, he was in a better position to resist.

“Come on, buddy,” I said as I led him back down in to his room. I climbed in to his bed and he followed, laying down next to me and putting his fingers in his mouth. By the light of his nightlight, I could see him adjust his body in to its ready-to-sleep position, and the tell-tale sign of impending sleep where he picks gently at his upper lip soon followed. His breath began to lengthen and, after only a few minutes, he was asleep.

On the nights that followed, we brought him back up to our room because his morning seizures had once again gotten worse and it was easier on all of us to be in the same room when they happened. No late night trips down the stairs and fumbling through the dark to find him sitting up in his bed; instead, we were next to him to reassure him and coax him back to sleep.

This has been the pattern of our lives for the past two years. When we think we are getting a handle on his seizures, we transition him back to his room. When he is in his bed, I vigilantly watch the monitor throughout the night and listen for any signs our most unwelcome intruder. When his seizures inevitably get worse again, we bring him back in to our room and spend the night uncomfortably cramped in a small bed, waiting for the sounds and uncontrollable movements that accompany the attack on my son’s brain.

If I seem tired, it’s because I am. Sleep is sporadic and short and only serves to keep me functional the next day. Some days, it’s barely enough to keep the lights on, but I find a way. Because most of us that are living this life don’t have the luxury or desire to stop because if we do…what we miss could be everything. So we stay on watch, careful and committed, for as long as we are needed.

This is what it is like to be the parent of a child with uncontrolled seizures.

Care keeps his watch in every old man’s eye,
And where care lodges, sleep will never lie.
― William Shakespeare, Romeo and Juliet

Owning My Duality And Being Seen

“Well,” I said, “twenty minutes before I got here, I watched my son have a seizure on the living room floor.”

The room fell silent.

What had started as a casual conversation about our personal lives and what we allow to escape turned in to an honest conversation about what it means to really know another person, and I dropped a bombshell.

I felt the emotion in my voice as the statement left my mouth. The quivering that comes from keeping my despair in check. I thought of the other seizures he had that day, and the one he had at 3AM as I walked in to his room. He was on the floor, changing his pajamas because he had an accident from an earlier seizure when another one hit him. As I reached him, his slurred words told me he had another bad seizure, and he cried.

I didn’t bring that up, though, so in the grand scheme of things, it was only a little bombshell. But it was enough. Maybe too much.

I rarely talk about those details. While friends, families, and coworkers occasionally ask how my son is doing, those glimpses can’t tell the full story. His condition is central to our experience, but the details of what we go through every day rarely cross the invisible boundary between our world and the one outside our walls. When I step out my door, I leave that struggle at the threshold and become the person that I need to be to fit the situation that I am entering.

There is a wonderful Ted talk by Ash Beckham where she talks about owning our duality. We should not be polarizing in our views…we shouldn’t have to choose between this or that. Instead, we can be both. Ash didn’t have to choose between being an aunt and an advocate, she could be both. She could hold those two things at the same time. Through compassion, empathy, and human interaction, as complex individuals, we are capable of holding so much more. She goes on to say that if people don’t see those things we hold or those things that we are, then they can’t truly see us.

I went back to that video as I was writing this post. I thought about how I don’t connect deeply with many people, and I wondered how much of that was because I don’t let those pieces of myself come out. I’m expecting to somehow build meaningful relationships without sharing those things that are most important in my life. If people aren’t given the opportunity to see how deeply I am affected by what is happening to my son, then how can I expect them to see me?

I need to own my duality. I need to be able to hold many things. And I need to be able to share those things with the people around me if I ever hope to build the types of relationships that are built on compassion, and empathy, and on truly being seen.

It’s not an easy task. It’s not easy to change the years of programming and overcome the societal expectations of men that left me closed and guarded and hidden. But it’s important. Maybe one of the most important things I can do for myself, and certainly an important example that I can set for my son so that he doesn’t go through his complicated and difficult life alone. He, too, will be many things at once, and I would like for him to be able to be those things at the same time, and to be seen for the brave, resilient, complex, and special individual that he is.