Any good film director or writer knows one thing. What you can’t see is much scarier than what you can. Our imaginations run wild and find the things that are scary to us that may not be scary to the next person.
Living with epilepsy could teach most directors a thing or two about that. It has plenty of unknowns to keep you kn your toes.
The most obvious are related to seizures. You never know when the next seizure is going to occur. Is it going to be when he’s safely sitting or laying down? Maybe. Or it may be when he’s crossing a busy street, what do you do then?
Even in our short time living with John Ross’ epilepsy and most of his seizures being when he’s asleep (more on that in another day) we have had scary moments too. Like the day he was swimming across the pool and just froze, mid stroke. He started to sink as my wife started to go towards him, calling his name. After a couple of seconds, which seemed an eternity, he continued as if nothing had happened. When asked afterwards he didn’t even know he had stopped. It’s called an Absence Seizure and typically is harmless, but not if you are swimming.
Another unknown is what will the next seizure be like? Will it be a relatively harmless one? Will it be like his others? Will it change into something worse? Will he start having tonic-clonic seizures (formerly known as grand-mal)? You never know with epilepsy as these things progress and change often.
Because of this there are things we can not let him do. He can’t ever swim without an adult. Can’t play football or soccer. Has to wear a helmet when biking or skateboarding (that one is always a good idea btw).
Because of the swimming thing, we can probably never let him learn how to surf. For most of the country this is probably easy and no big deal. We though, happen to live only minutes from Cocoa Beach Florida which boasts the best surfing on the east coast. You can be sure that all of his friends will be surfing as they get older and he won’t be able to join in.
Because of the unknown.
And that’s scary.