Tag: epilepsy

What Can’t Be Measured

We sat in the windowless office of the neuropsychologist’s office waiting to hear the results of the daylong series of cognition tests that my son took a few weeks before.

Like most parents, I know my son is intellectually gifted. I can easily point to instances where he figured out a hard problem that he shouldn’t have or learned a new concept much more easily than I could have. Genius? I don’t like to use labels, but since you brought it up, let’s go with it.

In the previous two years, however, my son’s brain had been through a lot. Seizures. Status epilepticus. Toxicity from an adverse reaction to medicine. For a few days, it forgot how to move my son’s body or form words for him to speak. In many ways, we had to start over, helping him form sentences and complex thoughts. Helping him put ideas together in the right order or to remember a simple sequence of steps. After everything he had been through, after having been picked up and spit out by a tornado, we sat in that office to find out where he landed.

“Overall,” the doctor said, “your son is remarkably consistent.” It took me a few minutes to absorb the word and process its meaning. I had expected the results of the test to fall on either extreme of the spectrum. Either he was back to being a genius or his brain was irreparably damaged, but consistent?

Sensing my confusion (probably aided by my snarky “Oh, my son is perfectly adequate, like buttered toast.” comment), the doctor went on to explain that the tests showed that, aside from a few areas that needed extra attention, my son was “about average.”

The higher you climb, the further you have to fall. Selfishly, that was the first thought that came to my head. My genius son who was destined for the stars had been forced back down to earth with the rest of us by a cruel twist of genetic fate.

It was only after a few minutes that I realized what a gift I had just been given. My son was “about average”. After two years of seizures, and status, and side effects. Two years without consistently going to school, of hard work at home teaching him to read and to write and count. After all of that, my son managed to come out “about average”.

It was a miracle.

As I thanked the doctor for her time, she added that she enjoyed spending time with my son. She commented about how hard he worked, even though she could tell that he was tired. Her mouth turned upward into a big smile as she told us how he made her laugh. Weeks removed from the time she spent with him and after seeing countless kids in between, that smile showed that my son had left her with something more than a score on a piece of paper.

Our neurologist had also taken time out of her day to join us in the meeting. She has been an amazing ally and supportive influence who sees what is special about my son. That evening, we received an e-mail from her that said:

I wanted to emphasize that this does not predict where he will go in the future, and there’s a lot of wonderful things about him that cannot be measured at this time given his young age and some of the best things in life just can’t be quantified.

Exactly.

October 13, 2016
What Got Me Here

“How are you doing?”

It’s such a loaded question. I fear that if I gave the real answer, it would overwhelm the person who asked it and they would never ask again. I’d be surrounded by people who were all too afraid to ask how I was and I’d feel more alone than I already do.

Most people get the obligatory “Good, thanks, how are you?” Closer friends may get more of the story. Maybe not the full story, but some of the mechanical bits about how tired I am because I never really sleep. But we don’t talk about how sad I am, or how much I worry about the future or what would happen if something happened to me? I’m not sure that I even talk about that with my wife as much as I should.

It’s isolating, this not wanting to burden the people around me with the depth of these issues. Besides, I’m a man. It’s not in my nature to share. We internalize, and apply logic, and try to solve an impossible problem. We certainly don’t talk to other people about it. It’s a sign of weakness. Even if other people are going through exactly the same thing and talking about it would be the high tide that raised all ships, it’s better somehow to keep all the boats stuck in the mud.

I know it’s bullshit. At least, my head does. I think. But after so many years of figuring it out myself and seeing where that got me, it’s hard to let go of the idea that the things that got me here are the things that are going to get me to where I want to be. After all, I have a pretty good life. I’ve done some amazing things and traveled the world. I have a Master’s degree and a good job. These successes are the result of my figuring out how to survive in this messy, hard and sometimes cruel world.

Those tactics, though, serve only to protect me from the outside world. Their side effect is to isolate me from the people around me. My wife is going through the same things I am, and when she is looking to me for support and a connection, I’m nowhere to be found, lost in my own inner workings. She may push and poke to see if I am there and I respond by pulling further away and burrowing further into my hole. In the end, we push each other away when we should be moving towards each other, we are left angry and frustrated when we should be comforting and empathetic, and we find ourselves alone when we should be together.

“What got you here is not what will get you to where you want to be.” That is the type of insight you get when you open yourself up to guidance and support. Asking for help is not a sign of weakness. It shows my commitment to my family and my belief that the stronger and better connected the unit is, the better capable we will be to face what is in front of us together. It shows that I don’t have the tools to solve this impossible problem and that it’s important enough for me to develop a new set of skills. It’s setting a good example for my son so that he doesn’t follow the same path of pushing people away and trying to do it all himself. It breaks my heart to think about the difficulties that he is going to have in his life and the idea of him facing them alone.

What got me here is not what will get me to where I want to be. It’s time to work on what will get me there, together with my wife, my family, and my friends.

September 29, 2016
We All Make Mistakes

When I was growing up, there was a family across the street from us that had two boys. One was my age, the other a little older, and they were both part of our neighborhood pack that would play baseball and football in the street, ride around on our bikes, or simply hang out in one of our yards. The younger boy and I, being closer in age, also shared an affinity for computers. His powerful Amiga had better games, so we would spend time at his house playing them, often for hours at a time.

I remember their dad being really strict. They would address him as “sir” and had to ask his permission for everything, from a can of coke to going outside to play. I could often see a look of fear on their faces when they interacted with their father, and I never knew what that was about until one day when my friend took a soda without asking. We were in the front room on the computer, and his father dragged him to the back of the house. As I sat there, I could hear my friend apologizing through the muffled sobs that echoed down the hallway. I heard the unbuckling of a belt followed by the crack of a whip and then more cries. After a few minutes, there was silence. My friend returned to the front of the house and told me that he couldn’t use the computer anymore and that I had to leave. His eyes were still wet. I couldn’t see him, but I knew my friend’s dad was listening, just out of eyesight. I stood up and left quietly.

I was probably thirteen when that happened and, in the years that followed, I watched as my friend continued to wrestle with his relationship with his dad. I could see it worn on his face, but he often shared how he desperately tried to please his father but always seemed to come up short. It was his failure, he would say, and not the unrealistic or inappropriate expectations of his father. I could see him starting to respond more with his own anger. His grades went down, which only made things worse between him and his father. He started to pull away, hanging out with different friends, until I stopped seeing him altogether.

After I moved away, my mother would occasionally give me updates. Unsurprisingly, my friend turned to drugs in high school. I’m not sure if he graduated, but this bright kid who could have done amazing things with computers burned out and gave up. My mother would see him every once in a while, usually at his father’s house after another stay at rehab. She said he was always polite, calling my parents “Mr.” and “Mrs.”. Each time, I would hope that he had finally sorted his life out, even as I wondered why he kept returning to the place that likely was the catalyst for the direction his life had taken.

As much as I hoped his life would take a different path, it never did. He was 33 when he died of an overdose. I couldn’t help but think that his death was the finally, unforgivable mistake that he would ever make and that it was the last in a long line of disappointments to his father. My friend spent his life never feeling like he could please his father. And then it was over.

I haven’t spoken to him since, but I sometimes think about my friend’s father. I wonder if he feels any responsibility for what happened. I wonder if he would change the past and how he treated his son. Sometimes, I wonder if I am making my son feel the same way.

The other night as I was putting him to sleep, my son said that he was sorry for making so many mistakes. It was a gut punch that came out of nowhere. My chest tightened up. I thought of my friend and his dad and I didn’t know how to respond. His comment was like an arrow that struck the bullseye of my greatest insecurity.

I feel like I’m always riding my son. Sometimes, it’s for normal mistakes that kids are supposed to make. Other times, it’s for things he can’t control because of the side effects of his medicine or seizures, or other complications caused by his condition. He struggles with attention and impulse control issues every day and, as hard as that must be for him, it must be even worse because I am constantly saying “no” and making him feel like he is always doing something wrong. I push him towards perfection because I think it will make his life easier if he can overcome his obstacles, but I am setting extremely unrealistic and unachievable expectations and setting him up for failure. And so I found myself lying next to my six-year-old who is apologizing for being a kid…and human. I don’t need to raise my hand like my neighbor’s father did to do the same type of damage.

I reached out and put my hand on my son’s shoulder. “We all make mistakes, buddy. It’s a part of learning and growing. If we didn’t make any mistakes, then we wouldn’t learn anything new. I make mistakes all the time. I must have made a hundred mistakes today.”

He rolled over and turned to me. “You did?”, he asked. “Like what?”

I laid down next to him and draped my arm over his shoulder. “Well, ” I said, and then I told him about the mistakes that I made during the day. I told him about what I learned from making them and that I was happy that I learned something new. We talked for a while (there were a lot of opportunities to learn and grow that day) until I saw his eyes get heavy. As he drifted off to sleep, I hoped that by sharing my own mistakes, he would see that everyone makes them and not feel so defeated. It was also an opportunity for me to reflect on those mistakes that I made, including how I responded to my son, so that I, too, could forgive myself, and learn, and grow.

My wife had a great idea and I think we are going to start doing it. We have a nightly routine where we talk about out day…something good, something bad, something we are grateful for. We are going to add a mistake that we did today and what we learned.

And then we’re going to celebrate it.

September 22, 2016
Things No Child Should Get Used To

A few weeks ago, we went to the children’s hospital for an appointment. We walked through the large, automatic doors and up to reception where my son said hello to Mary (they’re on a first-name basis), who commented that she liked his red hair. Without needing to ask, she pulled our family up from memory on the computer and printed our visitor badges.

Check-in completed, my son led us up the main staircase to the second floor. At the top of the stairs, he turned left and headed down the long hallway towards neurology. He knows his way around the hospital and which building to go to for neurology, or speech, or another test. As I followed him down the hall, it made me sad to realize how well my son knows his way around that place. A child should know his way around a toy store, not a hospital.

As we turned the corner, we passed phlebotomy. There were nervous parents and children in the waiting room, and seeing them sitting there made me think of the times we were in those chairs. The first few times, we were nervous, too, but after too many visits, we got used to it. Now, my son likes to talk to the phlebotomist as she prepares the needles. He politely says “No, thanks” after she invites him to look away, and he watches as the needle pierces his skin. “I never cry”, he says, which is almost true in the hundreds of times he has been pricked and pierced. “You should come here more often to show our other patients how to do it,” we’ve heard more than once. “Ok, ” my son replied, “I’m really good at it.” As I remembered him saying that, I felt sad. That’s not something a child should be good at.

He knows the routine of the physical exam, not because he has had years of exams under his belt, but because he has had so many in the short time he’s had epilepsy. These doctor visits, the trips to one of his therapists, the emergency room visits, they’re part of his routine, those things he’s done so many times now that he just does them because, well, that’s what he does. All these things are now just part of our lives, are part of his life, like eating, and breathing, and going to the park. He wakes up and takes a handful of pills, and another handful at night, without question, because that is what he has to do. He doesn’t get to eat the food that his friends do, and he can’t just have a snack, it has to be weighed and measured because that’s how it is and he’s used to it. He doesn’t look at a restaurant menu because he knows he can’t order from it, and he’s used to that, too.

He’s getting used to having seizures. He’s crying less after he has one in the middle of the night and more regularly just putting himself back to sleep. If he forgets to put on a pull-up and needs to change, I’ll often catch him on the floor halfway through the process by the time I get to his room. He’s getting more aware of his seizures, too. He had one on the basketball court the other day. When I asked him if he was okay and if he knew what happened, he replied, “I had a seizure, but I’m ok.” It rolled off his tongue so casually it was as if he was describing a shot that he missed or if he had tripped on a rock and fell.

On one hand, I’m grateful that he has accepted these restrictions and these changes in his life so easily. I am not sure that I have the strength to constantly explain to him why he has to do these things when I am still struggling with my own questions. Why is this happening to him? Was it something that came from me? Is this our lives forever?

On the other hand, if I think about the things that he has gotten used to, it breaks my heart. This condition has taken away too many things from the one person who I desperately wanted to open the world for, and I’m having a hard time resolving that discrepancy.

I try to think about the positives in this situation, but most of the time I just see a little boy who has gotten used to too many things that he shouldn’t have had to.

September 15, 2016
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.

September 8, 2016