If you ask someone what they think of when they hear the word “epilepsy”, they will most likely answer “seizures”. That certainly would have been my answer if you had asked me even just three months ago.
Now, though, the seizures only scratch the surface.. They’re the easiest for us to identify and to label and put in to a box. What is harder to identify and harder to quantify are the many other symptoms and side effects of the seizures and of the medicines that are running rampant inside of his body, and for which we have no adequate words to describe to anyone else, never mind to him.
How do you explain to a five year old why he gets so sad that he wants to run away, hide, and cry? How do you explain why he can’t control his emotions and why we have to hold him down for an hour or more before bed when his impulses take over and he is hitting, and spitting, and biting? How do you explain why he can’t control his body, why he is always so tired and why he constantly trips and falls when he used to be so agile?
I can’t give him a reason when he asks why this is happening. I can’t fix him when he asks me to make him better. I can only tell him over and over that I love him when I am holding him down until his anger passes. I can only try to make those moments when he isn’t too tired to function feel a little more normal.
The house had been quiet at night since we left the hospital. My wife and son had been sleeping on our small bed while I slept on the couch in the living room. This temporary living arrangement was brought on by necessity since his elevated loft bed in the basement was not compatible with our new reality, and the stairs down to his room posed a hazard should he have a seizure and try to navigate his way up to our room in the middle of the night.
The first few nights back home, there was little sleep as we waited to see how our son would do. We’d been in this cycle where we would leave the hospital armed with a new medicine and no seizures only to find ourselves back in the hospital a few days later when the seizures returned in force.
But after a week without an incident, in a house filled with silence, my body was finally able to relax. The slender couch with the small “Home Sweet Home” decorative pillow (that I know I’m not supposed to use) were a welcome relief from the uncomfortable hospital accommodations.
With so many quiet nights in a row, my brain resisted reacting to the alarm bell my ears heard echoing through the halls, the unmistakable sound bellowing from my son’s vocal chords that announced the arrival of another seizure . I rolled off the couch, landed on my feet, and raced to the bedroom at the back of our apartment. I caught a glance at the digital clock on the microwave as I passed. It read 5:32, and I noted it so that we could measure the duration of the seizure, the mechanics of counting and measuring seizures having become rote.
By the time I reached the bedroom, the thankfully short seizure was already over and my wife was comforting my son. I laid with them for awhile before returning to the couch. This time, my body refused to relax, and I nervously stayed alert to listen for another seizure, which also came later the same morning, followed by another cluster that required the use of the rescue medicines before they dissipated.
They call these “break through” seizures because they occur in spite of the use of anticonvulsants or, in our case, three anticonvulsants and countless prayers. We’ve experienced enough of them to know what we are supposed to do, which is as terrible as it sounds. But we stayed home and, given our year so far, that is a marked improvement.
It’s 4 in the morning and I’m sitting on the couch across from the hospital bed where my son is sleeping. Sleeping, finally, after having a cluster of seizures. The first one happened while I was lying in bed next to him. A quiet grunt announced the oncoming episode; a sound that would otherwise have gone unnoticed except for my newly acquired hyperaware sleep where I listen for any sound out of the ordinary.
The first seizure lasted under a minute, followed by another, longer one. They repeated for the next two hours, various lengths with varying breaks for sleep in between. As each seizure started, I would focus on the digital screen showing an analog-style clock affixed to the wall trying to quickly find the thin seconds hand on its journey around the face of the display. As the seizure ended, I’d groggily make a mental note of the duration to pass along to the nurse. Just beyond, a team of doctors looked at the data.
Robotic, calm, precise…all the things I wasn’t when he had his first seizure.
If you’ve never seen a seizure, especially happening to your child, the first few always stretch time. For me, there was a phase of not knowing what was happening. I thought he was playing a game until he wouldn’t respond for what felt like an eternity. Then the frantic 911 call, the waiting for the ambulance, the not knowing the different phases of a seizure and when it began and when, or if, it would end. When the paramedics and later the doctor asked us how long the seizure lasted, we didn’t know. We had no reference. Our initial estimate was 10 minutes, but time in those circumstances, time is stretched and bent and irrelevant to a panicking parent. We didn’t know we were supposed to know how long they lasted, and so we made an impossible guess.
Einstein said the “Time is an illusion”, that the passage of time is a psychological human condition, not a property of the universe. I don’t know about the universe. But as a parent, I know that sometimes time moves way too fast and, at other times like in the middle of a seizure or when you are waiting for an answer as to why this is happening at all, it moves too goddamn slow.