Showing posts from October, 2016

The Emerald City

Did I find myself in Oz this week?
I had a fascinating talk with Jason Baranello, a remarkable person who was diagnosed with epilepsy 13 years ago and never – that’s right, never – came in contact with the stigma so many of us know so well.In fact, when he first meets people, he often leads with telling them he has epilepsy, then instructs on what to do if he has a seizure.Always the response is support and, often, curiosity about the big E.They have questions, and Jason answers them.
Has Jason found what I call "The Emerald City" - a place free from prejudice against epilepsy?  Is it too good to be true?Possibly not.A few points of comparison of his experience vs. mine
Type of epilepsyTonic-clonicTonic-clonic
TriggerForget medsForget meds
Work environmentCorporateCorporate
Impact on sick timeLittleLittle

And now the fork in the road…
GenerationMillennialBaby Boomer
Self-perceptionHas nothing to doI’m “the other;” I’m whe…

Finding a Way to Acceptance

Do you remember one of Robin Williams’s most unforgettable lines?“It’s not your fault.It’s not your fault.It’s not your fault.”He said so over and over again to Matt Damon in Good Will Hunting, as Damon’s character struggled with demons that kept him from realizing his potential.
I was reminded of the movie’s scene the other day.And with my recent understanding of my epilepsy and its place in my life, it all makes such sense.Many times we hear of abused children or spouses who come to think that somehow they deserve what they’re getting.They must be fundamentally bad or, at least, different from the rest of humanity.They should live quietly, getting by as best they can in society.
Because of my epilepsy, I lived for years feeling that I was a weirdo, “the other.” Somehow, I thought that I didn’t deserve anything I got and any successes were just examples of my fraud of a life. I was in hiding with misplaced shame and pretty successful at it, too (except when I had my tonic-clonics!).