They (just who the heck are “they”?) say that things happen in bunches.
In the last few months, we seem to have been in touch with a lot of people taking care of a loved one with a seizure disorder.
When Joey was little, he had these moments when his eyes would flutter or even roll back for just a second. It was like he went on a mini vacation – when he came back, he was totally disconnected from what went before. But these dinky events were previews of future drama.
Fast forward to a morning in his high school years. I had Joey ready to go out to the car.
I said, “Get your backpack” and turned to the table to pick up my keys.
There was a heavy thud behind me. Annoyed, I turned to see what Joey had swept off of the shelves while putting on his backpack. Joey wasn’t there.
Then my ears filled with a demon possessed version of the laugh made famous by Beavis and Butthead. Joey was on the floor, his arms and legs rigid and thrashing. The horrid sound kept shuddering from his throat as his head kept up a steady knocking on the wood floor.
“Joey! JOEY!” I kept forcing out his name, although my lungs felt caved in. An idiotic reflex was telling me that if I got loud enough, I could call him out of whatever was happening to him.
Then he roared out that incoherent noise a final time and his arms, legs and head stopped convulsing.
It couldn’t have been but a few seconds, but like “they” say, time stood still. I thought I’d just watched my son die while I uselessly bleated his name. My breathing stopped and my insides began to surrender to nausea.
Joey breathed. A deep, close-to-snoring breath, the kind that would drive a parent nuts if the kid was supposed to be up for school. But it was heavenly music. He was alive.
Then came a blur of rushing him to an emergency room, not even running back to knock on the bathroom door to let Melissa know, leaving her with the terror of coming out of the shower to find my laptop glowing on the table instead of packed off to work, and Joey’s backpack tossed in a corner – just a room shouting “Chaos! Emergency! Something’s wrong!”
That was that day. Then came years of work with neurologists, experiments with different medications, and calmer recognition of a seizure’s onset. We became proficient at securing his head and neck and helping him to the floor. We learned to let him sleep them off, sometimes until the next day.
We pressed his school to keep aides near him and keep him in a gait belt.
He had bunches of seizures for several years. He came to anticipate them, moving to a chair or couch when he felt one coming. We prayed hard for protection from falls and worked hard to be prepared for them.
We learned to prioritize his head but also tried to protect his thrashing limbs. His shins often wound up bruised from beating against nearby furniture. Sometimes we could push an obstacle aside, but sometimes it would be a bed or other big piece and we just had to concentrate on bracing his head and neck.
There are years of horror stories we could share. Melissa dealt with one of the worst seizures one day while I was at work, and I’ll leave it to her to tell that tale, which is bloody.
The bottom line is that he’s not having seizures much anymore. His neurologists (he would sometimes ask for one of them by name if he felt like a seizure was coming, or after he woke up from one) came up with some good med combinations. But mostly he just passed through the craziness of puberty and his brain chemistry settled down.
Seizures are one more aspect of care giving that is devastating, demanding and largely beyond our control. They’re like what I’ve heard combat veterans describe – after you get passed the terror and confusion of the first time, you settle into the grim business and just have to deal with it.