#efne

[the-twitchy-life]

Walk for Epilepsy Boston

I went to EFNE’s Epilepsy Walk today!  It was fun!  I helped people get the right brochures- stuff related to their interest, etc- and got to catch up with folks.

There was music, and a stilt walker, and apparently the Bruins mascot is a big brown animal bear called Blades.  Awful. We fucking called our mascot KNIVES.  Because Bears aren’t murderous enough for Boston. Fine.  

And I spent half the time unable to talk above a normal speaking tone (not usually a problem, but there was music), because my vns is at 30s on/ 3min off, and it takes me ~30 seconds to get my voice back.  So that was a bummer.  

BUT I saw all the people I haven’t seen in a long time because I’ve been skipping Epilepsy Club meetings to go ‘Network,’ and I got to meet new folks with and without epilepsy- one parent with a kid who’d just been diagnosed after years of “We don’t know what’s happening but clearly something is up.”

I can kind of tell when I’m talking to an epilepsy parent, and they’re seeing how I can have a conversation, and I mention stuff like a job and a husband and a home and maybe a kid, that they’re feeling relieved.  Like, “Oh okay maybe my kiddo will turn out just like I expected them to.”

And on the one hand, I want to say, “Yeah, maybe they will.  They might end up having the life you imagined when they were born. And even if they don’t, they’re going to be a lovable human being with something to add to the world.”  

But I also want to say, “Look, no matter how ‘normal’ their life may look- even if they get the best-case scenario, they’re gonna have some struggle.  Realize that it’s always gonna be harder for your kid, no matter how ‘brave’ and easy they make it look.  Get your kid a therapist, and buckle up.”

So it was good to talk to new parents, but it’s also a bit emotional because I know my parents also struggle. But.  There was fun stuff, and implanty medical things to poke at (fun toys!) and talk to pharmaceutical reps about. I also took tons of pictures but I’ll post them kinda laterish, because right now I’m tired.

[thetwitchylife]

Guys I just got back from EFNE’s Adult Camp, and it was so great.

Just imagine walking into the house and knowing that every other person understood what it was like, having epilepsy.  The safety I felt was awesome.  We’d talk about the town, or our hobbies, or what music we liked, and then we’d talk about the weird side effects we get, or “oh man do you ever just totally blank on words?  Like three times as much as other folks?”

And the cool thing was, we all had these deeply uncomfortable, embarrassing, personal things in common.  It was like walking into a house full of strangers, and finding out you were all siblings.  

The hardest thing in each one of our lives was the same.  Even if the kinds of seizures, or the frequency, was different, the basic insecurity that underlay all of our existence was the same.

Even if they never have another Adult Camp again (and I hope they do), I am so thankful that I had this once.

[the-twitchy-life]

So there’s an Epilepsy Education Conference on September 29th (a Saturday) and I’m trying to figure out whether it’s going to be great, super educational, awesome, learn all this stuff, or like...

I’m going to learn that “Epilepsy is a seizure disorder caused by excess activity in the brain.  While it differs in severity from person to person, many people can continue living active, successful lives.”  :D

And since it’s in Providence, RI, I’d have to take a train there, so I’d really like it to be worthwhile, y’know?  That’s a long trip.

[the-twitchy-life]

Epilepsy Walk Boston

Apparently we raised $200K!  Well done us.  There were roughly 40 volunteers, I think?  The weather was atrocious- cold rain, occasionally windy, but luckily the weather was awful LAST year too so I was dressed for it.  

I’m all for raising money for EFNE.  They’re good folks and I’ve benefited personally from some of their programs. But the reason I keep volunteering for stuff isn’t the fuzzy warm feeling, it’s so I can see the folks who regularly volunteer.  

We’re a weird group of people who have enough energy to volunteer for stuff, but not enough to have like, normal active social lives.  It’s a fun crew. 

I’ll post some pictures over the next few days.  Here’s a poster!

[the-twitchy-life]

Ever since Goober and I announced our engagement, we’ve been sort of the EFNE mascots.  Like, they cheered us on and held us up as, like, proof that epileptic folks can be in healthy happy relationships.

Which like, is fine!  But also puts kind of a weight on it- like, beyond our own hopes and dreams. Yikes!

[the-twitchy-life]

EFNE party!

I wish I’d taken pictures at the Epilepsy Foundation party, but I was having too much fun to think of it. Whoops?

I saw a bunch of friends, met some awesome new folks, ate plenty of food (They labeled gluten-free foods!  For me!), got career advice, and finally saw the new EFNE headquarters.

BUT it was great, everyone was happy to be there, and I got to break the news of Goober and my engagement to my epilepsy friends. Yay!

I hope everybody’s having a wonderful day, or if not, that your day improves from this moment on.

Love, peace and joy, 

Twitchy

[thetwitchylife]

Let’s go for a stroll...

Just signed up for my volunteer shift at the Boston Walk for Epilepsy.

While “Walk for-” whatever events kind of annoy me (it’s trite), this is a really fun social event for the peeps who volunteer, and I don’t know if the walkers realize that almost everyone who volunteers at these events IS epileptic.

Like, the walkers are almost all flatliners whose cousin/brother/coworker’s daughter/spouse has epilepsy- and go them!  Glad you’re fundraising!  But 90% of the folks who set the walk up and break it down are the folks who you’re fundraising for. (The other 10% provided the rides.) 

Strikes me as funny.  The Jimmy Fund Walk isn’t staffed by kids with cancer, but the person collecting your meal tickets DEFINITELY brought their meds with them today.

[thetwitchylife]

Someone at the last Epilepsy Club meeting talked about maybe doing rock-climbing as one of the group activities, and my god I hope they do.

Strap me in and send me up, I’d be so excited to do what is Definitely Not Allowed.  As she said, it’s perfectly safe as long as you’re strapped in.  But nobody would let me use their rock climbing wall, knowing I have epilepsy.  And I would love it, so much.

So... if EFNE won’t take us, I might just take myself and not tell them. Bad idea?  Great idea!