There’s such triumph saying “I’m seizure free!” It might be the most powerful statement I’ve ever made.
But these are not words I utter lightly, because I never thought I’d say them. How many times I daydreamed and cried over this, I cannot begin to count. In the early days of epilepsy I felt very isolated. I learned that 1 in 26 people will develop epilepsy in their lifetime, so it’s not exactly uncommon. I thought,  Where is everyone then?- because I feel like such a freak. This is alone like no other alone I’ve ever experienced. Who understands this?

Flashing back, my journal of March 2004:

I have this demon of epilepsy haunting me. Sunday I had another seizure! I was getting ready for church. Wayne was in bed and I was in front of the bathroom mirror. Later I had another one that didn’t fully develop past the scary aura stage, I could hear myself talking about weird stuff and I wasn’t all there.  At church I ran into Janice and told her what happened and she just gave me a big hug and said Zanna, I’m so sorry.  And that’s when I realized how upset I was because I started crying.  The next morn I thought I was doing ok but I lost it and was crying again. Wayne didn’t want to go to work, hated leaving me, but I told him I’d be fine. He left work about 12 and we spent the afternoon together.

I hate being asked how I feel. Fine, I’m just fine, thanks. Do you mean mentally or physically? Because if you had a clue you’d realize this epilepsy doesn’t really affect my physical capabilities, but in my mind and heart I’m a flurry of fluctuating emotions & questions and I don’t want to think about it too much or I’ll SCREAM!

I guarantee you know someone living with a long-term invisible condition.  Someone’s rotten day might be resulting from their mind and body betraying them, like mine did for years.  Take heed, and have a little compassion. Because a lot of us are not “fine”.

And for my fellow syndrome-suffering friends, I am truly sorry for your pain. Mental pain, physical pain, the wishing you could trade it for any other problem. Maybe like me, you’ve said plenty in prayers and cries to God. Some angry, some sorrowful, some totally despondent, saying, what’s the purpose? And how do I live like this?

If you’re the partner standing helplessly alongside, you’re walking that wilderness too. And it’s almost as bad for you, watching your loved one deal with this recalcitrant condition. Do what my hubby did: Go along to doctor appointments. Read all you can about the illness, stand by and hold steady. You can remind your loved one to NEVER surrender!
“Two are better than one…for if either falls, his companion can lift him up, but pity the one who falls without another to lift him up.” Ecclesiastes 4:9-10