Last night I was out tinkering with some uncooperative lights by our front door. A neighbor came up and invited me to come over to a gathering around a wood fire in the driveway next door – a group was there and they wanted to “get to know the mysterious people in the gray house” (that’s us).
It was a pleasant gathering and a good chance to explain my hermit-like existence. Care giving means keeping a close watch. Our adult son with autism had seizures set in when he entered his teens, and there’s just no leaving him alone in the house.
The neighbor who invited me over perked up – turns out his adult son, who is not autistic, just started having seizures. Opened quite a door toward getting to know about one another’s families, that. He and his wife worry that they can’t keep constant tabs on their son, who is athletic and likes to take swims in lakes by himself, among other behaviors that wrack parents’ nerves.
I know a clergyman in another state who called when the same problem intruded on their family. Their son, despite seizures, graduated from medical school and got married.
Apart from the neurological damage that can accompany seizures, the danger of falls with head and neck injuries creates stressful isolation and hyper-vigilance for care givers. Trying to stay in proximity to another person, “just in case,” warps both social and emotional life. Melissa and I couldn’t sit around the neighbors’ fire together – one of us had to stay in the house to watch Joey while the other socialized.
Seizures leave a lasting mark on care givers, too. Here’s a bit from our upcoming book (really, we’re just waiting on the cover art… release is imminent), Blooming Idiots.
One of the worst stings our family suffered was Joey’s teenage onset of grand mal seizures. The first one came with no warning and we thought we’d watched him die right in front of us. It is a sickening memory.
Although Joey’s seizures are less frequent since he got past puberty’s brain chemical chaos, one will sneak up on him now and then. The big danger is head or neck injury from a fall.
Any loud noise will make us scramble to respond. I noticed my anxiety rising at a gym, when the really big lifters dropped their massive weights at the end of a set. The kaboom of metal plates hitting the floor sounded too much like a Joey seizure in progress.
One night at home, Melissa heard a crash and rushed out of our bedroom to help Joey, only to find it wasn’t Joey down. It was me. I’d gone to help Joey dry off after his bath and slipped on water he’d splashed out of the tub.
I was fine, but Joey’s reaction wasn’t what one might hope. He was laughing. I mean cracking up. To him, it was like a pratfall in a comedy. He thought I was doing something to entertain him. It was up to Melissa to say the right things like, “Are you OK?”
If you have family or friends who are caring for a person with a seizure disorder, it means a great deal to give them a break. Learn to recognize seizure onset so you won’t panic, and find out about the proper first aid. Giving a care giver some down time won’t totally purge the stress we carry, but it reduces it, at least for awhile.
More than that, it can save a life.