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Making Moments Matter

Last weekend, we were in Washington D.C. for the Epilepsy Foundation walk. We had planned the trip for months, and we tucked away some money to pay for the trip and activities while we were there. As it happened, there was a playoff hockey game in D.C. on Saturday night. It wasn’t something we planned on, and hockey tickets are expensive…playoff tickets more so.

I called my wife and told her about the game. “We should do it,” she said.

There was a time in my life where I would have argued. Where I would have tried to rationalize the cost, and crunch the numbers, and adjusted the budget. My wife tried for years to teach me the value in making moments matter, but I had a hard time listening or believing her until my son got sick.

The past few years have been an endless struggle to control his seizures, switching medicines, managing side effects, and behavioral issues, a difficult diet, and the stigma of having epilepsy. Some days, he can’t control his body, or he seizures at night and has an accident. He wakes up some days wanting to give up, or comes home from school embarrassed because someone laughed at him for drinking oil with his lunch. It’s an impossible life for a six-year-old.

Moments don’t need to be expensive or cost money at all. As we walked down the National Mall, he was just as happy playing tag and hide and seek on the grass, and doing the scavenger hunt in the hotel. I could have said I was tired, or that I wanted to see the sights. But those little moments of playing his game and giving him an opportunity to feel normal and to simply have fun matter, too.

But hockey is one of those things that my son hasn’t given up on, and the universe was sending me a message by putting a playoff game in the same city where we would be and, to be sure I wouldn’t miss the message, the game was also against our home team. We bought the tickets and surprised him with the game.

Even though our team didn’t win, the home crowd appreciated his enthusiasm and pat him on his head as he cried in to his hands after another tough loss. As we walked out, he had a smile on his face and moved the home team up on his favorite team list.

I’m grateful my wife has tried to teach me to make moments matter.

And I’m glad I finally listened.

The Internet Is Not A Doctor

My son’s epilepsy diagnosis came with words that I didn’t know. Status epilepticus. Refractory. Subclinical. I had a lot of questions about these words and what they meant for my son, so I turned to the same place I always turn when I have complicated medical questions.

The Internet.

Sure, our doctor would also have been a good source since, usually, she is the one using the foreign words. But being in the doctor’s office after a long exam and a long day is overwhelming, and being a web-savvy-engineer-type, the Internet is my happy place. Besides, nothing bad every happens on the Internet.

Turns out, that’s not true.

I’m one of those people who search for symptoms on WebMD, the place where a stuffy noise quickly escalates from common cold to incurable cancer.

Searching for the words surrounding my son’s diagnosis quickly leads, after a few clicks, to truly terrible conditions, none of which could my son possible have. But the seed of despair gets planted and, after a few more clicks, somehow his epilepsy also gave me an incurable disease. I don’t (as far as I know) have a disease, but I do have cyberchondria (one of my new, favorite words).

Hello, Internet, my old friend. I’ve come to search WebMD again.
~ Simon and Garfunkel (98% sure)

Once I was able to tear myself away from WebMD, I pulled up Google. I had more questions that weren’t related to solving the riddle about why my son had epilepsy but, instead, were about what his life would be like with epilepsy. Since he was a baby, he wanted to be a hockey player. I searched for “hockey players with epilepsy”.

The results that came back were not promising. Wait, I thought, can he even play hockey with epilepsy? Another Google search.

More unsatisfying answers just led to more questions. Soon I found myself sucked down another rabbit hole, this one less about clarifying a diagnosis and more about what type of possible future my son would have, even before we knew enough to even guess at what his future would be like. Looking at my browser history, it revealed a pattern of creating limitations in my head about what my son could ever hope to accomplish. Worse, I was arming myself with information that I could use to project those same limitations on to him, which is the opposite of what my search was meant to achieve.

The Internet is an amazing tool. It has the power to connect people, to share information, and maybe one day to help find a cure for epilepsy. It can inform patients and parents afflicted with a condition and provide a common vocabulary for the exchange of ideas. But it can just as easily overwhelm and do more harm than good, particularly with a new diagnosis and especially when the cause of the condition is still unknown.

My excursion to the dark side of the Internet left me with these two thoughts that I try to remember when I find myself lost on the information superhighway.

The Internet is not a doctor.

In the future, everything is possible.

My Son Has Epilepsy, And It’s OK To Talk About It

A few weeks ago, a representative from the Epilepsy Foundation visited my son’s kindergarten class to talk to them about epilepsy.

When the school year started, my wife and I had a conversation with my son’s teacher, setting expectations and filling her in on his condition. One suggestion that his teacher made was talking to the other kids about epilepsy. My wife thought it was a good idea (she knows kids way better than I do), but I was hesitant.

I was worried that calling attention to his epilepsy would make my son will feel different and that talking about his epilepsy would announce to his class that something was wrong with him. I wanted to hide his epilepsy so that he could just be a kindergartener, and make friends, and just be a normal kid. Subconsciously, maybe I felt that if we didn’t talk about epilepsy that it would somehow magically go away.

I was traveling for work so I wasn’t able to be in class when the coordinator talked to the kids. But on the other side of the country, the fallout that I dreaded from exposing my son’s not-so-secret never came. My wife told me that my son sat up in front of the class, in full view of his peers, as they asked simple, fundamental questions that my son helped answer. Why doesn’t he always eat lunch? Why does he leave early? Do seizures hurt? Can I catch epilepsy from him?

And then that was it. After they were done asking questions, they went back to their school day. They didn’t treat my son any differently and, perhaps, they had a better understanding of the situation because they got answers to those questions that they didn’t know they could ask.

I know that not every conversation about epilepsy is going to be that easy. There will be people that are curious, or confused, or unaware of his condition. There will be bullies that will use my son’s condition as ammunition to attack him. But the answer isn’t to hide it away and pretend it’s not there, it’s to talk about it, to help people around him understand, and to help him feel confident in himself. Hiding bring shame, and the last thing I want is for him to be ashamed of anything about himself.

Not talking about epilepsy isn’t going to make it go away. But maybe by talking about it, other people will be more comfortable talking about it, too. Then it becomes a conversation and, through conversation, we can have understanding and compassion.