Category: lifestyle

Unnatural Times

Every morning, I like to sit near the window of our condo and look out on to the streets of Philadelphia. I watch as the empty sidewalks start to fill with people. The roads fill up with cars. Food carts appear on street corners. Lights turn on in the office buildings. Mornings are when the city wakes up.

Usually, on weekends, the process is a bit slower. It takes longer for the sidewalks and the street to fill. But eventually, they do, and the city finally comes to life. Not lately, though. There aren’t as many people. There are fewer cars. And not as many lights in the office buildings are turning on.  Now when I look out the window, the city hasn’t been waking up. It’s a perpetual Sunday morning that lasts all day, every day.

Being stuck inside the house is unnatural. We aren’t used to the confinement. We are social creatures and miss those connections and contact with the outside world. Our bodies and our minds start to panic, which is only exacerbated by the fear and uncertainty of the spreading virus. It’s unnatural, but, for me, it also feels familiar.

A few years ago, my son was in a bad state. He was still seizing a lot, and the angry side effects of the medicine he was on came out as rage. He was isolated at home without social contact; no school, no friends, no playdates. My wife stayed home with him, equally isolated. A similar fear and uncertainty blanketed our lives, not knowing how long these conditions would last or, worse, whether they would ever change. Maybe that was going to be our life now, forever.

We couldn’t plan anything. We couldn’t really go anywhere. So we lived in a dark apartment, watching the city through our front window, hoping for something to change. That lasted for more than a year. Eventually, we found better medication and a nanny to help. We got therapy and found our way back to each other. But it was an agonizing and traumatic time, and our current isolation is triggering those painful memories.

Before “social distancing”, things had been better. My son was going to school for half days, but every day this year, which he couldn’t do before. He made a few real friends. We were looking forward to baseball season, bike rides, and summer. But now we find ourselves, along with the rest of the world, wondering what comes next.

It feels like another test of our strength and capacity to adapt to another “new normal.” Fortunately, we’re starting from a better place. My son is doing better. Our family is stronger. And we know that because we made it to the other side of those dark days years ago that we can make it through these challenges, too.

These are unnatural times. But as parents of children with epilepsy, we are no strangers to unnatural times. Hang in there. Remember to be kind to each other. Remember to make room for yourself. And we will make it through together.

On The Surface

Recently, on the way to school, my son told my wife that he wasn’t feeling good. She turned around and took him home where he slept for three hours.

Usually, he will try to push through. I don’t know if he doesn’t recognize what is happening in his body or if he is too stubborn or eager to please, but he goes dangerously beyond his limits until he crashes. We have spent so much time picking up the pieces and putting him back together after he does.

My son started having seizures before he developed a reference or the vocabulary to describe what he was feeling. He only knows seizures, and medications, and side effects, and fatigue. There was never an absence of these things that he can recall and contrast when it happens to him today. For him, that is normal.

We have spent years watching him closely and trying to be the external monitor of his condition. We ask probing questions when we suspect that he is off, but he often answers “yes” as if he assumes we know what he is feeling or can describe what he can’t. But we only see the external signs. We can only see what is on the surface. And our vocabulary and ability to describe what is happening to him is as limited as his.

Me: “Do you have a headache?”
My son: Yes.”
Me: “Do you know what a headache is or feels like?”
My son: “No.”

I write every day. At work, I use words to describe complex systems. But the words that I know seem inadequate to describe what I can only imagine he is feeling. It’s words and concepts in another language that I am just beginning to understand after five years. We’re trying to use that language to communicate but too often things are lost in translation.

It’s another one of the many frustrating things about being the parent of a young child with epilepsy. I want to make the seizures go away, but I can’t. I want to eliminate the side effects of his medication, but I can’t. At a minimum, I want to understand what he is going through so that I can help him but there is so much about his condition that is invisible to us. It’s a terrible feeling of helplessness.

I’m hopeful that, as he did on the way to school, he’s starting to build awareness of what is happening inside his body and vocalizing it. Becoming an advocate for himself and expressing his needs will be critical for him to be able to navigate a world that is not always kind or forgiving or tolerant of people who are different.

For the past five years, we have been the monitors of his condition and the ones expressing his voice. As much as I felt ill-equipped for the role, it was necessary because my son was not able to do it himself. It made me feel needed and useful instead of focusing on my inability to find a way to make the seizures stop. I am comfortable filling that role but I can only account for what is on the surface. There is so much more to him and his condition than what I can see.

The reality is that the more I take on that responsibility, the longer it will take my son to learn to do it himself. It will take longer for those symptoms and feelings that exist below the surface to reveal themselves. And it will take longer for him to get what he needs because he won’t learn to put his needs out there. At some point, the help I am trying to give him becomes the thing holding him back.

Reality and I don’t always agree, but it is usually right.

The Night Watch

Every night before he goes to bed, my son takes a handful of pills.

The pills are the last line of defense that my son has against the unrelenting seizures that constantly lurk on the horizon. Especially at night, when his brain slows down to recuperate from the day, my son’s brain isn’t strong enough to defend itself against attack.

His medication is meant to strengthen his defenses so that his brain can rest. They are the guards on the parapet defending the residents inside the walls throughout the night. But the gaps in my son’s wall are too wide for the guards to cover. It’s not a question of whether a seizure will break through; it’s how many. It’s how much damage will the attackers do before the sun rises.

We’ve tried to boost his defenses. New medications. The ketogenic diet. VNS surgery. But none of them have prevented the nightly raids from exacting their toll on his developing brain. Even combined, they are no match for the electrical storm the flows wildly across the neurons and floods the cells.

It could be worse. It has been worse. Before we knew what this was, the flood nearly took my son. The uncontrolled pulses flowed through the gaps in his natural defenses and eventually breached them entirely, leaving his body frozen and his mind disconnected. We managed to beat back the invader and rebuild. We strengthened the walls. We bolstered the night watch. But our seizure calendar records the history of attacks, painting cells with yellow markers revealing every defeat in long ribbons of sequentially colored squares.

Every night before he goes to bed, my son takes a handful of pills because there is nothing else to do. We stick to our routine because it is better than the alternative. His pills, his diet, and his VNS play their part. But as he drifts off to sleep, I turn on the monitor and take my post watching over him, too. Because it’s my job on the night watch to be there when his defenses ultimately fail, to comfort him after the attack, and to help him rebuild the next day before we do it all over again.