Behind Closed Doors

January 22, 2012 · Filed under Uncategorized

Would you voluntarily let a security camera run 24/7 in your home, to record every conversation, glance, sound? There was a time I would have said, “Never!” but recently I’ve been rethinking that. Can you imagine? Oh, there would be the embarrassing moments, the comment you wish you could take back, the dirty look you hope no one saw, but there would also then be the “proof.” Proof that Jenna has a disability, proof that she still deals with Lyme disease on a daily basis, proof that we’re not just exaggerating.
If I were to tell you that every night for the last two weeks I’ve removed door handles, duct taped my front door closed at several different heights, set a door alarm, and piled noisy items in front of it, you probably would think I’m crazy. But, if my camera were to reveal that Jenna’s Lyme psychosis has been flaring and that she has had several episodes of seizure-induced amnesia every night and tried to “escape” from the home she doesn’t recognize, you might then understand that there is a method to my madness. If I were to tell you that the bubbling almost 19 year old who recently earned her district manager title with Arbonne couldn’t read independently most of yesterday you would be skeptical, especially after she made numerous cold calls the same day, but if my camera were to show you one of the “silent” seizures that leave her in a post stroke-like fog for hours you would get it.
My very first blog entry so many months ago was titled “You Don’t Get it Until You Get It,” and I’ll continue to stand by that, but add to it that until you have a child that gets it, you’ll never get it. I could throw statistics and reports and medical records at you for years, but you won’t get it. You’ll never understand that when you see us out and about in public it’s only a snapshot, a brief moment in time. And yes, we do our absolute best to be “normal” when you see us — in fact, Jenna will go over and above to make sure that you have no idea she’s not well. You can bet that she’ll do her best to not let you see the whole body twitches that she holds in while smiling or that she climbs into the backseat of the car so that the child-safe locks protect her when she has a seizure. It’s what goes on behind closed doors that defines our lives on a daily basis and shapes Jenna’s world as she lives through it.