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.
It’s been five years since my son’s first seizure. He still seizes on most days. The side effects of the seizures and the medications take their toll on his brain and his body. He can’t do all the things he wants to do, and he sometimes struggles with the things that he can do.
It’s been hard.
But other people have it worse.
Are we the lucky ones?
Taking handfuls of pills every day to keep seizures under control isn’t lucky, but we have access to healthcare and can afford his medication.
Falling behind at school isn’t lucky, but he goes to school.
Having behavioral issues isn’t lucky, but they are rarer than they were.
Managing mental and physical fatigue every day isn’t lucky, but he can walk and talk and play baseball.
Having seizures every day isn’t lucky, but my son is still here.
There is always someone somewhere that has it worse. That’s the trap of comparing one’s situation to another. But minimizing our anger and frustration and pain doesn’t make them go away. It doesn’t make my son’s seizures go away, either. It just takes me away from my feelings and makes me feel guilty for having them.
We’re not lucky because his situation is better than someone else’s. There is nothing lucky about epilepsy and what my son is going through.
But I do feel lucky.
I feel lucky because he’s my son.
“Do you understand?”
We’ve had countless conversations with my son that all end the same way. We’ve tried repeating ourselves. We’ve tried to use smaller words. We’ve tried to use fewer words. But too many times, that process inside his brain that converts what he hears into something he understands breaks down.
It could be related to his seizures. It also probably has something to do with the handfuls of pills he swallows every day. But he lives his life surrounded by a thick fog and he struggles to find his bearings.
In conversations when we’re trying to explain something new to him, I can see a faint recognition. It’s like seeing a shape through a really thick fog. He knows there is something there, but he doesn’t know what it is.
When we talk about a memory, even a big event, he has the look of seeing the edge of something familiar that he knows he should recognize but he can’t really place what or where the object is.
In those moments when he can recall something, it’s like he is looking at something only a few feet in front of him. But then it backs away into the thick, white cloud and is lost again.
It makes me think of trying to navigate a new city that is covered by fog. You might know the general direction to start in, but haven’t yet memorized the entire route. The tops of the buildings are obscured by the fog, so you navigate by finding landmarks at ground level. Most of the references are unknown. Occasionally you’ll find one that looks slightly familiar but is unhelpful because you don’t have the context of where it sits in relation to anything else. When you find something you recognize, you get the brief satisfaction of knowing where you are. You might turn in a certain direction. But as soon as you step away from it to continue your journey, you’re lost once again.
We do our best to help him. We’re pointing out the landmarks, hoping that he’ll recognize more of them so that he can more easily know where he is. We’re getting him help so that he can develop the skills that he needs to find his way. And we’re calling out to him when he is too far away to see us so that he knows that we’re still there. But there is nothing we can do to lift the fog itself.