Tag: epilepsy

Paying The Toll

We were coming off a good weekend. We celebrated my wife’s birthday on Saturday, and we ended Memorial Day visiting friends, having a swim lesson, and staying up a little later to see part of the first game of the hockey finals. We put my son to bed tired but happy.

Just after midnight, the first seizure came. I heard the sound come from my son’s room a second or two before the sound came through the speaker of his monitor. By the time I got to him, it had passed. He was sitting up in his bed disoriented, so I helped him lay back down and waited for him to fall back to sleep.

The next seizure came a few hours later. The next one an hour after that. And the next one an hour after that. It was like aftershocks after an earthquake, except each of them was just as intense as the one before it. He had at least four that I saw, but we learned during the overnight EEGs that we don’t see them all.

When he does anything that exerts an effort mentally or physically, a nap-time seizure or a collection of seizures during the night is likely to follow. We bowled for an hour and he had a seizure during his nap. After a morning baseball game, a seizure. Even though he only goes to school for a few hours, he’ll often have a seizure during his nap.

We tried to explain it to his school. It’s not just about what he can handle in the moment. The exertion carries beyond the activity itself. It show’s up as more seizures, which set him up to be more tired the next day. That lowers his seizure threshold for the next day, too, making him more likely to have seizures or requiring him to spend more energy regulating his emotions or attention. It’s downward spiral that ends with the husk of a boy too tired to function.

It feels like the universe collects a toll from my son based on how much he gets to actually live his life. It imposes a penalty to knock him back down and remind him of his limitations when he tries to exceed them. Someone with uncontrolled seizures shouldn’t play baseball. Seizures. Someone with uncontrolled seizures shouldn’t be progressing in school. Seizures. Someone with uncontrolled seizures shouldn’t be going to the skate park, or an amusement park, or a hockey game. Seizures.

Every time it happens, I question whether we did too much. But I gave up wondering if we should be doing anything at all, because that’s having no life. That’s letting epilepsy win. That’s not giving my son the life and the world that he deserves. So we’re careful and we’re calculated in deciding what to do and how much to do. We do our best to protect our son but let him be part of the world. We introduce as much downtime as possible so that we can distrupt his pattern of exhaustion and let him do the things he loves.

The universe seems committed to collecting its toll, but we’re doing everything we can to minimize how much my son has to pay. Because we’re going to keep on living.

Looking Back

We had a friend over recently and showed her a video from one of my son’s baseball games. We streamed the movie from my Google Photos account through my phone on to our television. Once the video was done, I pulled up another video from the library because most of the pictures and videos from my son’s entire life are stored there. We watched a silly hockey battle video we made when my son was two. A video of our family sledding in the Rocky Mountain National Park when from when we lived in Colorado.

Using these devices and technology, we don’t have to remember anything because they remember everything for us. We can type a word in to a search bar and pull up a list of memories. We can replay our lives in sequential order in a level of detail that was unimaginable even a few decades ago. Now, our lives can flash before our eyes a`t the push of a button.

Sometimes when we look at these memories, it’s like my son is seeing them for the first time. Years of his life are covered by a thick fog. Sometimes he can make out shapes if he tries hard enough, but mostly it’s just a blur. He likes seeing the videos because he likes the idea that he did those things. Meeting a football player. Getting high-fives from hockey players on their way on to the ice. Seeing the world from the top of the Empire State Building. But they’re in a convoluted state somewhere between first person and third person, but not quite either.

While it’s amazing to have these memories so readily available and the ability to look so far back into our lives, it’s also a curse. It means we can never forget those things that we might want to forget. When Google Photos or Facebook offers up a memory, they can sometimes be painful. Like the time he was in status for days and we almost lost him. Or the time he was toxic on a medicine and couldn’t move his body for two days. Or they can be reminders of a time before my son was diagnosed with epilepsy that forces me to reconcile that there was a before and that there is an after.

I’m glad that he will have the digital versions of his memories so that he knows we did everything we could to make his life special. I want him to be able to look back and know that, even though his life was sometimes hard, we didn’t let epilepsy stop us from living our lives. And, even though some of the memories can be hard, I’m grateful we have them, too. Because they also serve as a reminder of how far we’ve come.

Not Feeling “Less Than” Because Of Epilepsy

One of my fears for my son is that the world will make him feel “less than” because of his epilepsy.

There is a quote by Temple Grandin where she says “I am different, not less,” referring to her autism. I like the sentiment of her message. Having a condition like autism (or epilepsy) doesn’t make one less of a human being or less important than anyone else. But “different” doesn’t go far enough to describe the impact that epilepsy has on my son. “Different” is blonde versus brunette, hazel eyes versus brown eyes. Those differences are superficial. Epilepsy affects every aspect of his life, from his behavior, to how tired he gets, to the food that he eats, to how he learns and how he feels about himself. Having epilepsy is more than about being different. It’s a vital part of understanding my son.

I struggle with balancing the importance that epilepsy has on his life with just saying that it makes him “different.” I want to hide his condition to protect him from the people who will use it as ammunition to attack his sense of worth. At the same time, I want to share that part of him with the world so that it can see how special he is. But I know I can’t have it both ways. I know that the tightrope between protecting him and showing the world who he is will get harder to walk as he gets older. The more he shares that part of himself, the more vulnerable he will be to the people around him that don’t understand or who are looking to exploit his condition as a way to boost their own perceived worth. At eight, the jabs are more innocent. At sixteen, the jabs will be meant to injure.

So what is the answer? Maybe my son will grow out of his epilepsy and never have to deal with feeling different when he is older. It could happen, but I’m not betting on it. Even if it did happen, though, that’s not the answer. I need to continue to build him up, to help him understand his value, to understand that his epilepsy does make him different but that it does not make him “less than” someone who doesn’t have epilepsy. I need to continue to reinforce that message until he accepts it for what it is…truth. It might not feel like the world’s truth, but it must be his.