This is a Seizure

I have been trying to capture one of Robert’s seizures on video for a while. I thought it would be one way to raise awareness about seizures and make them (hopefully) a little less scary. I kept waiting for the just the right opportunity to get the “perfect” seizure (which, to me, meant Robert was sitting down, I was able to capture all of it, the surroundings were very calm and serene, my house wasn’t a mess, nothing got broke and no one got hurt).

That’s not how seizures happen. Seizures come on unexpectedly and sometimes things get messy. Dinner plates almost end up on the floor, for example.

Unless I have a camera trained on Robert 24/7, I can’t capture the beginning of a seizure. A young woman  who lives with epilepsy and is on a mission to raise awareness about seizures and epilepsy actually did this by setting up a webcam while she slept which captured her seizures. I commend her for her bravery and for the inspiring way she is living her life in spite of intractable epilepsy.

Robert’s seizures are called Complex Partial Seizures. He doesn’t convulse but he sometimes twitches his right hand or tugs at his clothes. If he has one while standing, he falls backwards (which is why he wears his super deluxe helmet). One time, he yelled during a seizure but what he was yelling about wasn’t clear and he had no memory of doing it. He actually rarely remembers having a seizure unless he wakes up on the floor. Only then will he admit to having a seizure. Otherwise, his standard answer to “how are you, Robert?” is “I’m doing well. No seizures.” There’s no point in correcting him since it makes him happy to believe he hasn’t had seizures in a long while. I don’t see the harm.

I finally let go of the idea of trying to film a seizure in the perfect setting and decided to post a short video of him having a seizure when he was at our house this past weekend. My husband and I were sitting down to dinner with Robert and Robert started to say grace, as he does before each meal. He prays he doesn’t have any more seizures and I think he prays that I go to church more often (he mumbles, so it’s hard to be sure). God, apparently, is ignoring his requests on all fronts.

The prayer was interrupted by a seizure.

The video shows Robert, hands clasped in prayer, head to one side, having a seizure. It shows a dinner of a lot of pasta and canned peaches – don’t judge (to add to this nutritious meal, chocolate ice cream was on the menu for dessert). The video also shows me running to catch Robert’s dinner plate so it doesn’t end up on the floor. Seizures are messy and unexpected and that’s just the way it is.

One thing I learned at the neurologist’s office yesterday is that once Robert is able to respond verbally, then the seizure is over even though he is still in a state of confusion (you’ll see that too on the video). I thought the confusion was a continuation of the seizure since he is pretty out of it. I’m still learning about seizures and epilepsy and hope this helps you learn a bit more about them (and us) too.

By the way, Robert said it was okay to post this.