I often tell my students, when the conversation turns to social networking and electronic correspondence, “Never post or write what you wouldn’t be comfortable seeing on the front page of the newspaper tomorrow.”
The idea isn’t mine, of course–and the warning appears in various iterations: “Don’t post or write something you wouldn’t want your grandmother/boss/first-grade teacher to read.”
And though I blog here and write elsewhere about the stories of my family’s life and update my Facebook status nearly every day, I try to refrain from airing my proverbial dirty laundry in cyberspace.
However, since this story has landed on the front page of the paper (URL below)–Saturday’s paper to be exact–I feel somewhat free to comment here.
I am grateful to The Newport Daily News for doing a tremendous job to help raise awareness on Aquidneck Island about epilepsy–not only with Saturday’s article but also the followup editorial in Monday’s paper. And I am indebted to The Matty Fund for their unwavering and thoughtful support.
Those who know our family know we’re veritable open books but yet simultaneously aspire to stay under the radar. We don’t seek the spotlight and, in fact, generally eschew it.
But Edgar’s diagnosis revealed something I wasn’t expecting–that epilepsy in 2011 is still surrounded by a mystique that hearkens back to centuries past and that those who have this neurological condition are still met with fear, nervousness, and apprehension.
And as a teacher, I know there is only one way to change that–through education.
Edgar’s neurologist told us in the Emergency Room the day he was diagnosed that as a parent of a child with epilepsy, our threshold for the symptoms of this condition was going to be much higher than the rest of the world’s. And that, quite simply, isn’t good enough for me. And it’s certainly not good enough for Edgar and for everyone else who shares his diagnosis.
There is nothing about this boy that should be met with fear and apprehension:
He has epilepsy–and that is all.