epilepsy Archives - Page 62 of 84

Cornerstone

I’m a big fan of the show Westworld. Robots and cowboys. Oh, and Anthony Hopkins. What’s not to like?

Westworld is an HBO show about the dawn of artificial consciousness. Credit: HBO — *Westworld* is an HBO show about the dawn of artificial consciousness. Credit: HBO

In one episode, the characters introduce the concept of a “cornerstone memory”. In architecture, a cornerstone or foundational stone is the first stone set in the construction of a foundation. All other stones will be set in reference to the cornerstone and it will determine the position of the entire building. For the robots in Westworld, the cornerstone memory is the one that their entire identity is built around. These memories define the robot’s central story and tether their thoughts and actions to a core motivation or theme.

The humans in the show have cornerstone memories, too, just as we do in real life. These memories stir up the feelings associated with them as if the moment just happened and dictate how we respond to the world. We use these memories to remind ourselves who and what we are.

I keep going back to my son’s first seizure, feeling the fear and the sadness that I first felt watching his body tighten and his head turn to the side. I lose my breath as I remember him being unresponsive as I desperately tried to wrestle him from his seizure, the panic I felt, the helplessness. I can’t bear to stay in that memory too long.

That memory drives my present day actions and motivations. It is why I write this blog. It’s why I signed up for the marathon. The helplessness I felt in that moment and the realization that I felt lost is why I sought help to cope with the complex emotions and challenges that lie ahead. It’s why I committed to becoming a better father and a better husband, to provide for my son and my family, and why I work so hard to give them a good life.

As painful as that memory is, I try to be grateful that I have it because of how much my life has changed for the better because of it. I don’t know that a less painful memory could have had such a profound impact on how I live my life. As much as I wish my son wouldn’t have to go through any of this, I’m not sure that any other path our life could have taken would have brought us all as close as we are and I don’t want to take what we have for granted.

In Westworld, the cornerstone memory is the one story that the robot’s entire identity is based on. It’s used to keep them on a predefined narrative. If they try to imagine a future that varies from their path, the memory pulls them back to keep them within the bounds of the set story. I find myself doing the same sometimes when I try to imagine a future for my son. The memory of that first seizure tries to limit those possible futures that I can see and it takes everything I have to fight its gravity.

But life is not about one story, it’s made up of hundreds. Thousands. The memory of my son’s first seizure is one of my stories, but it’s not the only one. It has influenced my life, but so have the other memories that I carry with me. My life doesn’t have one cornerstone. It has many, creating an infinite number of buildings in complicated shapes that are still being built.

The memory of my son’s first seizure is a cornerstone, not the cornerstone. It has shaped my life in many ways but it, alone, does not determine my future. Or his. Our experiences change us by they do not control us. We are human, with unlimited potential and countless unwritten futures. We should embrace that, and we should create a future that celebrates that potential.

Taking A Chance Or Playing It Safe

I should have known there was something wrong when my wife texted me that our son had a seizure in school. Seizures during the day are rare for him, but I thought that maybe we wore him out sightseeing with his cousin who was visiting over the weekend. That was an especially bad day to break from his nocturnal seizure pattern because that afternoon he was supposed to be back on the ice for his first hockey class since his seizures started more than two years ago.

When we lived in Colorado, hockey was all this kid wanted to do. We played hockey on the floor since he could walk. We even made a movie about it.

He started skating when he was around three, and he started his first hockey class just before we moved to Philadelphia, which also happened to be the time his seizures started. With how bad things got, hockey and skating were out of the question. Taking away something he loved so much was one of the cruelest things that epilepsy did to him.

It took almost a year, but once he started to regain his balance and stamina, we found him a coach to do off-ice drills with him. We continued to play hockey on the floor or at the park, but he would always ask when he could get back on the ice. I didn’t have an answer.

After nearly eighteen months, we let him back on the ice. It was only for short periods of time because his balance, stamina, and attention issues still prevented anything too rigorous, but it was something. To a kid that loves hockey more than anything else, though, it’s just skating. There is something different about doing it in full pads, with a hockey stick, and surrounded by other hockey players and we weren’t there yet, although that was about to change if he was well enough to go to this new class. After more than two years, he was about to return to where he was before the seizures started, which is why the timing of the daytime seizure was extremely unfortunate.

We decided to see how the rest of the day went. After school, he took a nap and my wife said that he seemed fine after he rested. We took the chance and she brought him to the rink and I left work to meet them. As I walked in, I saw my son scan the room and realize that he was in a locker room, surrounded by other hockey players. He was so excited that he trembled as he put on his gear. By the time I got there, he flashed a smile and asked me to help him finish getting dressed. Apparently, mommy didn’t know the order things had to be put on in and he had to keep taking something off in order to first put on the thing that should have gone before.

Finally dressed, he tucked his mouth guard into his toothless smile, grabbed his stick, and headed to the ice. It took all he had to not sprint, and he would have if the ice were further away. But he walked up the steps, past the bench, through the door and, finally, onto the ice. He skated around for a minute to get a feel for the ice and then skated over to his coach with the rest of the team.

It took all I had to not burst into tears on the bench. My heart was filled with such joy to see my son so happy. We do a lot of cool stuff as a family, but my son also does a lot of stuff that other kids don’t have to. Dealing with seizures, doctor’s appointments, therapy, an impossible diet, more therapy, more testing. He doesn’t have much control over even basic things that his peers do and, for a while, epilepsy had taken from him the one place where he could be himself and do something that he loved to do for himself. But there he was, on the ice, smiling and sending me an occasional thumbs up (which is really difficult to do with a hockey glove on) as he did the drills with (and better than) the rest of the kids.

Halfway through practice, though, from across the ice, I heard the sound that I dread every morning and I saw my son slump forward onto the ice. The coach moved towards my son and I yelled, “He’s having a seizure.” “When?” the coach asked. “Right now, ” I replied. As the coach knelt down, my son rose to his feet. I motioned to the coach and he had an assistant help my son to the bench. We sat him down and went through the protocol. “Do you know what happened? Do you know where you are? How are you feeling? Which way is your brain going?”

I told the coach that my son was okay and that he needed a break. The coach mentioned that he’s a nursing student and just happened to start reading about seizures and epilepsy medication. Serendipity. After awhile, my son told me he was ready to go back on the ice. As a parent, I felt faced with an impossible choice. Should I put him back on the ice on a day where he is clearly having more seizures and risk him getting injured? Or should I play it safe and take him home and take away the joy he was feeling? I glanced at my son who was watching the other kids on the ice and I made the heavy choice to let him rejoin his team. As he skated towards the coach, my heart raced and I watched his every move without blinking. Every fall was agony. Did he just fall or did he have another seizure? Thankfully, he would pop right back up each time and rejoin the drill. When class ended, I let out a huge sigh of relief as my son skated over to me, gave me a fist bump, and stepped off the ice.

By this time, he was exhausted but he took off his gear and I helped him put it back in the hockey bag. His eyes were a bit droopy, and I could tell that he wasn’t really there. He had given everything he had to be on the ice and his body and mind were starting to give in. It’s a blessing and a curse that my son wills himself through the things he wants to do and the things we ask him to do. I wish life were easier for him.

When we got home, I put him on the couch and made him dinner. He ate quietly and watched a little television before bed. As I went to get his evening medicine, I noticed that his morning doses were still in the pill dispenser. I asked my wife if she had given him his meds. It turns out, she didn’t. The daytime seizures, the exhaustion…we found the culprit.

Mistakes happen. It’s a lot to juggle four doses of multiple medications a day, a special diet, seizures and the normal chaos that comes with a seven-year-old boy. I felt terrible that the first time back on the ice, his head must have been going haywire. He had seizures. He had to come off the ice. He wasn’t really present. He barely remembered being there. All because we made a mistake on the day that he was finally able to go back to his first love. The poor kid can’t catch a break.

We gave him his medicine and the next day he was thankfully back to normal. I’m still not sure if we made the right call keeping him on the ice, and I suspect that we’re going to have a lot of similar decisions to make in the future. But that’s just part of managing epilepsy, and trying to give my kid as many things back that his condition has tried to steal from him. He won’t get it all back, but every little bit counts.

The Absence Of Obligation

The music pumped through my earbuds and filled my ears and mind as I crossed the bridge towards University City. A heavy bag of gear laid across my back. With each step, the skates that were tied together and draped around my neck swung left and right across my chest. Two sticks were pressed together in my left hand as my right tugged on the bag strap around my shoulder. The walk took less than fifteen minutes.

The walk took less than fifteen minutes. I descended the stairs and saw my destination. A few more steps and I pushed through the doors and turned the corner to a door with a faded white “4” on it. I rested my sticks against the wall and pushed the door open with my foot and slid into the musty locker room. There were already people, mostly college kids, getting changed. I found an open spot on the bench, dropped my bag to the floor with a thud, sat down, and began the ritual of getting dressed.

Lower body first…jock, knee pads, garter, breezers and socks. Skates are always next, then a big, deep breath to try to shake the butterflies. Upper body…shoulder pads, elbow pads, and jersey. I stuffed my gloves into my helmet, grabbed my water bottle, and walked towards the ice, grabbing my sticks on the way.

At the bench, I finished the routine. Mouth guard in and helmet snapped on. One stick on the bench, the other in my hand as I slid my left leg over the boards and pulled myself up to sit on the edge. A slight shift and I felt my skates make contact with the ice and, without hesitation, I pushed myself forward and picked up a puck with my stick. The butterflies were gone, replaced by excitement and a huge, grateful smile.

In a previous post, I wrote about the importance of taking care of myself so that I can take care of those around me. Playing hockey a few times a month is one of the things that I do for myself. I exercise at least three days a week but, usually, it is with the mindset of keeping myself healthy…a “have to” instead of a “want to”. While I enjoy the benefits and the feeling of a good run after it’s over, exercising is generally a chore instead of something that I honestly look forward to. Hockey, though, goes on the calendar, not on the to-do list, and I count down the days until I play again like it’s Christmas.

It’s hard to make the time to do things for myself. I feel so responsible for my family that I feel like I either need to be spending time with them or doing things for them and there is no room in that mindset for anything else. But I also largely walked around burned out after my son was diagnosed with epilepsy. I was scared, and frustrated, and overwhelmed and those feelings came out when I interacted with my family. I was distant, and irritable, and resentful. I wasn’t able to truly be present and connect with the most important people in my life when it mattered most.

I knew something had to change. I needed to find time to not be surrounded by the enormous responsibility I feel all the time. I needed an outlet to relieve the pressure. On the ice, I am able to focus on my game. I needed to find better coping skills to handle the pressure, so I found someone to talk to that is helping me develop those skills. I write as a way to process my thoughts and most of it is done without the expectation of being published. The absence of an obligation to do these things and to, instead, feel like I am doing them for myself is liberating. These activities help me breathe and to be more present so that when I return to my family, it is hopefully as a better husband and a better father.

If you’re reading this, you can probably relate to the feelings of being overwhelmed, and the feeling that there is no time to do anything for yourself because of the obligations that come with caring for someone that needs more attention and keeping everything afloat. I want you to know that that is not a sustainable situation. You will burn out. You will get resentful. You will find yourself further away from the same people who you are sacrificing for, and you owe it to them and to yourself to find something that you can do for yourself, free of obligation, to refresh, recharge, and to persevere.

What things do you do for yourself that are free from obligation? Share with the community by leaving a comment with an activity that you do for yourself.