“Some of us have to grow up sometimes, and so, if I have to I’m gonna leave you behind”…
“If there’s a future, we want it”…
“It’s just a spark, but it’s enough to keep me going”…
“I’m still into you.”
For a long time, I didn’t want to tell anyone in my professional world about this unique feature of my brain. On the topics-that-are-fun-to-disclose-in-the-workplace-o-meter, epilepsy ranks somewhere between “I’ve been embezzling candy from the vending machine for the past 15 years” and “I am actually a camel.” I was worried about being viewed as an invalid, a workplace hazard, a weirdo. But above all, I was afraid that people would see me as stupid.
…. Although nowadays, fewer folks view seizures as possession by the devil or evil spirits (as many, many cultures have throughout history), the palpable discomfort around the topic of epilepsy is pervasive - and it has tangible effects. Until the 1970s, it was legal in the US to deny people with epilepsy access to theaters and restaurants, and in China and India, epilepsy’s still an accepted reason to annul a marriage. Workplace discrimination is prevalent, and people who have epilepsy tend to earn less money than those who don’t. Consequently, there’s a clear incentive to avoid telling anyone you’ve got epilepsy, if you can get away with it.
“There is an ongoing, significant embarrassment level about it,” the director of NYU’s Epilepsy Center told The New York Times, stating that “the feeling, for a lot of people, is that it does carry a lot worse stigma than a cancer.” It follows that most people with epilepsy don’t like to talk about their condition publicly, and that, in turn, perpetuates the stigma … which makes it a whole lot more difficult to raise money for research and lobby for equal rights.
So, now I am telling all of you I have epilepsy. (I have epilepsy!) If the director of an independent, progressive news organization in which everyone works from home can’t say it, then how the hell can we expect anyone else to?
Pain Won’t Stop
i’m constantly waiting
for an explanation;
an answer, a reason,
there’s something more
than the things i know:
a secret kept,
a story left untold.
but if there isn’t
and this is just your way,
listen to me closely
when i say:
this is the last goodbye
“All the love’s still there, I just don’t know what to do with it now. You know, I still can’t believe we both did some things I don’t even wanna think about. Just say you love me and I’ll say I’m sorry. I don’t want anybody else to feel this way.”