Sometimes, I really strongly dislike my circumstances. When I can’t get myself healthy. When I don’t understand something. When I’m angry or off balance or sick. When the side effects of medications feel like they might be worse than the condition. When I can’t take pain medication for something unrelated to epilepsy. When someone makes a joke or comment about my life that’s hurtful (for example, that I don’t drive. That I can’t have kids. That sometimes, you know, I have seizures). I struggle to remember that not everyone knows or that people don’t understand the significance of the condition. There’s no hiding from who we are.
I’m scheduled for a procedure tomorrow morning. I will have been awake for 24 hours (27 technically), and not have eaten for 12 hours at that time. The technicians and medical professionals will be able to identify the brain activity that is triggering the latest seizures. I am very unhappy, and very scared, about knowing that there is the probability that I will have a seizure.
Usually I wake up after the seizures are completely done. It’s easy to be flippant when recovering, because the event has already happened. I don’t have a choice at that point. Right now though, I am by myself, waiting, for something that is painful to happen. And not painful in a way like running a marathon where I am proud after. Painful in a way that hurts and I am choosing that this is a good idea. I’m not excited. Emphatically unexcited.
I am very tired, very hungry, and very afraid. If I could be filled with wine or pizza (or both) that might make this wait a little bit more bearable.
This is the hand I was dealt. I can’t control that. I can’t change it.
I can decide which card to play. And while it might be very tempting to throw all the cards in the air and storm off, that doesn’t help me. There’s no hiding from who we are.
It’s almost 3:00 am. I’ve been watching movies and reading novels. I’m 5 hours away from getting this started.
I AM excited for tomorrow night, in which no matter what happens in the procedure, I will be enjoying wine and pizza. Probably in bed. And I will eat that entire pizza. All of it.