Monday, December 31, 2012

Dear Teen Me: Young Authors Tell About Accepting And Living With Illness

(An excerpt from Dear Teen Me)
By Carrie Jones
Dear Teen Me,
Okay, a lot of people write about their health problems. And I get that. I mean, a lot of people like to talk about their broken bones and gastrointestinal issues, and whatever. That's fine. During flu season, people will go into graphic details about how they puked every two minutes. They'll even revel in details about the consistency of their vomit—and trust me, whether it was acidic or chunky, it was definitely gross.
You've never been one of those people, though. It's not that you think sickness shows some kind of bodily or spiritual weakness or something like that. You just think it's boring. And as far as you're concerned, there's nothing worse than being boring.
So when you were super little and broke your ankle playing tag at Debbie Muir's house, you didn't talk about it. And when you were in second grade and you broke your front tooth, you didn't talk about that either. You even kept your chronic bronchitis a secret.
And now?
I guess the older you—that is to say, me—is sticking to the plan. Because writing isn't talking, technically speaking. But I still feel this weird sort of apprehension, of nervousness. A little voice inside my head keeps telling me, "Sickness is boring. Tell a joke, Carrie. Tell a joke."
But seizure jokes are terrible, evil things. These are from

  • Do you know what to do if someone has a seizure in a swimming pool?
    • Throw in the laundry
  • What's blue and doesn't fit?
    • A dead epileptic
There are some that are even worse, but I'm not going to include them here because I'm nice like that. So, you're probably wondering why I'm even telling you seizure jokes.
Well, in about a month, a boy is going to do something horrible to you. The incident and its aftermath will haunt you for a really long time, and it will affect your life in ways that you'll never expect. One of those unfortunate, life-changing consequences includes a case of mono—but, worse still, the virus that causes mono is going to act a little funny in your case. It's going to attack your brain. And it's going to give you seizures.
DO NOT FREAK OUT!!! Things I know:
  1. You're about to go to college
  2. You don't have time for this
  3. You don't even like to talk about being sick—because being sick is boring
And I'd like to be able to tell you that it's going to be okay. I wish that this letter could actually somehow reach back in time and grab hold of you there—so that you could avoid that party, so that you could escape being hurt by that boy, and so that you wouldn't have to suffer through seizures every day of your freshman year. But I can't tell you that. Things don't work that way.
So, um, the points here are:
  1. You're about to experience something truly awful. Even though you don't drink, a certain very cruel, very callous guy is drinking—and there's nothing I can do now to stop that thing from happening.
  2. One of the lasting effects of this horrible experience is a virus that winds up giving you seizures.
  3. Do not give up.
Seriously. That's the point. DO NOT GIVE UP. You're going to have seizures. You are actually going to develop a rash as a result of those seizures. The rash is pretty gross. Pack a lot of tights and pants to hide it. The seizures will start with your hand jerking. Then you'll pass out.
Here's the thing: Your sickness isn't important. It's not going to define who you are. You have to be the one to do that.
Your first seizure will happen at home. You and Joe are hanging on the floor, watching Amazon Women on the Moon—this spoof movie that makes fun of other movies and shows. It's sort of a bunch of weird skits that feature things like a hero guy fighting against giant spiders, and a first lady who used to be a hooker. Stuff like that.
You aren't feeling great. You think it's the stress. A half-eaten tray of nachos rests on the heavy wooden coffee table in front of you. About four cans of Pepsi linger around the nachos, flip tops open, and almost drained.
You scratch at the weird rash down by your ankle. It's a bizarre array of red dots and circles. It isn't bright; just sort of looks like faded markers. You hate it because it makes you imperfect. You also hate the idea of leaving Joe, even though you're super psyched about the future right now, and about getting out of the split-level house with the ugly brown couch. You're ready to leave the entire town of Bedford, New Hampshire, behind—because it seems to be nothing but rich people (except, that is, for you).
And because it's one of the weaker scenes in the movie, and because, even though something awful happened at that party, you and Joe are hormonal monsters, you start to make out. Kissing Joe is like kissing sunlight. It energizes you, makes you all shaky inside, like you're dopes up on a caffeine IV or something crazy like that. When you kiss him, you can smell him, and he smells clean… everything is right in the world until IT happens. You're inhaling that smell when he breaks away and says, "Your lips are kind of dry."
"Oh!" You grab for your Pepsi. "Sorry!"
You remember taking a sip…holding the can…hand shaking in this weird, rhythmical way…Joe grabbing the can, his eyes all soft and concerned… his voice sounding far away. "You okay?"
That's all you remember.
Bruce Link wrote, "Stigma exists when a person is identified by a label that sets that person apart and links that person to undesirable stereotypes that result in unfair treatment and discrimination."
The first step comes when people realize that others are different from themselves. They give those differences "labels." Next, culture determines that those people with certain characteristics are representative of everyone else who shares those characteristics, and a "negative stereotype" develops, which creates an "us vs. them" mentality. Finally, those who have been labeled begin to find themselves discriminated against.
There's a massive history of people feeling ashamed of their epilepsy. Epilepsy was hidden. Epilepsy was a secret. Epilepsy was something to fear. Epilepsy was and is a stigma.
But you have it, Carrie. You have it, and it will be okay.
Remember, we define ourselves. Define yourself as awesome.

Carrie Jones is the internationally (and New York Times) bestselling author of the Need series and other books. For more information about Carrie, please visit
For more information about Dear Teen Me, please visit

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