2

Armed with my joint jailers—my splints—and my mom, I make an announcement to my second grade class. I write in big, uneven letters on the chalkboard the name of my difference: JUVENILE RHEUMATOID ARTHRITIS. I pretend it doesn’t hurt just to do that. I explain what it is, how the swelling in my joints—I interrupt myself to explain what a joint is—makes it hard for me to do most things. I show my splints, concrete evidence that I’m not just making this up to get special treatment or pity. (Anyone who’s ever received pity, real pity, the kind that diminishes your worth, knows that it’s not a gift.) I explain that my aide helps me so I can keep up with the rest of them. And I finish my speech in the same social standing as I started it: as an outcast. But now at least everything’s out in the open.

A few days later, I make my first close friend. Her name is Meaghan, and she’s as much an outcast as I am. Worse, actually: she’s an outcast for no apparent reason. There’s nothing physically wrong with her, and the adults all say there’s nothing mentally wrong with her either. We kids know better: Meaghan is strange, as if she sees the world at a different angle than the rest of us. But she’s loyal to me and doesn’t make me feel like a lesser person, so I’m happy to have her as my friend.

There’s another girl in my class, though, that I really want to be friends with. Her name is Katie, and I am strangely drawn to her. She’s popular, but that’s not it: I want to be her friend because she’s pretty. It takes me months to gather up the courage to talk to her, but one day I have it.

It’s near the end of the day, when everyone is spending a few final moments chatting with friends or packing up their bags. Katie is gabbing with her two closest friends. Meaghan is absent, so I have no one to talk to. Infused with an unusual amount of courage, I walk over to Katie.

“Hi, Katie. Can I have your phone number?” I can’t believe these words have come out of my mouth, but they have. Now I just have to wait for her to publicly humiliate me in front of her friends.

“Why do you want my number?” She catches me completely off-guard here; I expected a simple yes or no answer, probably a no, not to be asked my reasons.

I say the first reason that comes to mind, the real one: “Because you’re pretty and I want to be your friend.”

She smiles, lifting my heart, and then answers, “Well, I think that’s a bad reason to want to be someone’s friend. But you can have my number.”

She writes it down for me. I’m careful not to let our hands touch as she hands me the piece of paper. I never tell Meaghan about this, ever. And I never call Katie, either. She’s right, after all: wanting to be someone’s friend because they’re pretty is a bad reason. Still, for a few moments I bask from the knowledge that I have her number.

Every day at school, the aide follows me around, including into the bathroom. It’s the epic humiliation: having an adult go into the bathroom with you. It doesn’t matter whether or not the other kids know about it. I know it, and it makes me feel ashamed that I can’t even go to the bathroom by myself.

It’s not even that I can’t use the toilet alone or have trouble getting on and off the seat. I wear spandex pants every day because I can’t do zippers or buttons. My only consolation is that spandex pants are somewhat popular, though most of my classmates wear jeans. But there are days when even the spandex pants defeat me. I’m lying here. It’s not an unusual occurrence for me to waddle out of the bathroom stall with my pants only up to my knees. Being able to pull up my pants on my own, that’s like my birthday, Christmas, and Easter wrapped into one moment. I can exit the stall and tell the aide that I don’t need her help. For one moment, I feel the glistening pride of independence.

But most days, my pants win the battle, and I have to exit the stall and pretend not to mind when the aide pulls my pants up for me.

Eventually, Meaghan and I become close enough that she knows that I need help in the bathroom. And since she already knows, and has done me the enormous favor of not telling everyone else about it, it’s time for me to ask her the utterly humiliating question: can she help me go to the bathroom? Her face twinges in alarm at the question.

“What kind of help do you need?”

This is almost as humiliating as leaving the stall and seeing the aide waiting there to pull my pants up… but if I can’t do it, I’d rather have Meaghan do it than the aide. At least with Meaghan, it’s my choice. She wasn’t assigned to me by the school.

So, I tell her about the pants. I tell her I can handle my underwear (THANK GOD), but I just usually can’t pull up my pants on my own.

And she agrees. From then on, Meaghan accompanies me every time I go to the bathroom. When I leave the stall, pants down to my knees, she just bends over without looking and pulls them up. We never talk about it. We never laugh about it. It’s just something that happens.

And the aide waits outside in the hall, unneeded for one blissful moment.