100 Days (12 page)

Without meaning to, I blush. “Shut up. Of course not.”

Grant smiles at me. “Okay, then! What else is new in your world? Which dreamy new boy band are you listening to?” Even Fern looks appalled.

“You suck,” I tell him. Still, he makes me laugh. He always has.

“Okay,” he says. “I'll stop. How's Agnes?”

“The same. But, you know…”

“Older,” he says.

“Yeah, by, like, decades since the last time you saw her.”

“Agnes is Moira's friend we were talking about,” Grant tells Fern. “The one with that aging disease?”

“Progeria,” I clarify. I always feel protective of Agnes when other people talk about her. Grant would never say anything mean, though. I know this. When Agnes and I first met and Grant was in his junior year of high school, he and his friends were all so freaked out about how fragile Agnes was that they'd practically tiptoe around the house when she was around.

After dinner, my brother lies down on the living room floor with Bingo. “Such an old man,” he says. “Look at that white muzzle.” In response, the dog stares adoringly into Grant's eyes and lets out a long, heavy sigh. Then he farts. Audibly. Wheezing, Grant gets up and settles himself on the big couch next to Fern.

He asks how things are at his old high school, and I let out an irritated sigh. I tell him about finals break, the school district's newest attempt at staying relevant and sucking less. For a few years now, most of the public schools in our area have been getting poorer and hemorrhaging students, losing them to the charter schools.

“Finals break?”

“Yeah, we're getting a week off in May, even though we just had spring break last month. Students are supposed to use the time to study for the upcoming exams.”

Grant laughs. “As if.”

“Right? It's idiotic. Plus, finals won't even start until a week
after
we get back from finals break, so it makes no sense at all. Everything we study during the break is probably just going to leak right out of our heads by the time the exams finally roll around.”

“Gotta love administrative scheduling logic.”

“Hey,” Fern says as my brother drapes her legs over his lap and starts rubbing her feet. “You should come hang out with us for the week.”

I look at her. Fern really is pretty, but not in an aggressive, in-your-face kind of way like some of Grant's other girlfriends have been over the years. This is another fact that makes her easier to like.

“Sounds great,” my brother says.

“Uh…” I answer, an intelligent response if there ever was one. At least I manage to not say what I'm really thinking, which is,
Yeah, that's not going to happen.

Grant sits up. “Seriously, Moira. You can stay at my place and check out Cal.”

My hands are up in front of me as if to stop his words, but Grant's on a roll, and he won't shut up.

“What are you, a sophomore now? Yeah, it's totally not too early for you to start checking out colleges.”

“But I…” I look at my parents, like maybe they'll help shut this thing down.

“I think it's a wonderful idea as well,” Mom says.

Dad just shrugs and smiles, a pacifist to the end. “Why not? You could fly out to the Bay Area, take the train, maybe. Flying's a lot quicker, though. Two hours, max.”

“Mom,” I say. “Dad. A plane ticket is going to be too expensive. And it's, like, a twenty-hour train ride or something.”

*   *   *

Later, after everyone's gone to bed, Mom comes into my room.

“I don't want to go,” I tell her.

“I can see that.” She sits on the bed next to me and tucks a strand of hair behind my ear.

“So why are you guys acting like you're going to make me?”

“Nobody's going to make you do anything.”

“Well, it seemed like pretty much everyone in that room was in agreement about what I should do, but nobody bothered to ask me if I wanted to go or not.”

“Just out of curiosity, why
wouldn't
you want to go?”

“God, why
would
I?” There are so many reasons going away for an entire week would be a bad idea. “There's Agnes, for one,” I begin.

Also, there's the whole “traveling by myself to an unfamiliar place” thing (which, not wanting to sound like a total chicken, I don't mention). And I don't even want to know what kind of food Grant has at his place. Bean sprouts? Tempeh? Probably the same crap my mother keeps in the fridge here, but at least in my own house, I don't feel compelled to actually
eat
it out of a sense of politeness. I can't really say that, either, I guess. “I have … stuff I want to do over the break,” I finally say. It sounds lame, like I'm making it up on the spot, which I am.

“Look,” Mom says. “I know you're worried about Agnes. You're always worried about her, and I get that … to a point. But your dad and I have been thinking that it might not be a bad idea if you started branching out a little bit. Getting out of your usual experiences.”

“Like sitting naked for a room full of people so they can sketch me?” It's a bitchy thing to say, and I don't even know why I chose this one thing from Mom's past to bring up now. I regret the words the second they leave my mouth and hang there in the air between us.

Mom raises her eyebrows. “Wow.”

“It's just … God.” I drop my head and rub the spot above my eyebrows with my thumb and forefinger. “What's so awful about my usual experiences? It's not like I'm out there hooking up with guys or doing drugs. I mean, seriously, I never even stay out past my curfew. Are you trying to get me to do the whole crazy-teenager thing? Because I'm sure I could find some freak kids downtown who would gladly—”

“Moira, hey.” Mom puts her hand on mine and brings it down so I'm forced to look at her. “You are a wonderful, amazing young woman. And I think you know I don't want you doing those things. But can we admit that there's a pretty huge middle ground between having a very limited, very regimented social life and … expanding one's horizons a little? That's all I'm saying.”

“Agnes doesn't have anyone else.” God, how pathetic is it that I'm using Agnes as an excuse? But it's true.

“Well,” Mom says. “You know, maybe she would if…” Her voice drops off.

“If I stopped being friends with her? That sounds pretty shitty, if you ask me.”

“We love Agnes. I think you know that, too.”

“I thought I did. Now I'm not so sure.” I'm just throwing out whatever pops into my head at this point. It's like I'm trying to build a hasty wall of words to stop this conversation from happening yet again. Mom loves Agnes, but this isn't the first time she has expressed concern about the time and energy I put into “being there” for my best friend above all else.

“She's there for me, too,” I've told her more than once. That always seems to end the conversation pretty effectively, which is a good thing. I don't want to have to explain all the ways in which our friendship is not a one-way street, the ways in which Agnes is a shield for me just as much as I am for her. The problem is, I'm not sure I could explain it if I tried.

Plus—and it's not like this is a major deal or anything, but it's definitely on my mind—how can I explain the movie that plays in my head when I think of traveling alone to a strange place when I've never even flown before? There's the opening scene of my fat self trying to squeeze into a too-narrow airplane seat, for starters. And what if I got airsick? Yeah, that would be a lovely new kind of performance art. I'd call it
Fat Goth Chick Puking in Front of a Hundred People at 30,000 Feet
. I imagine the disgust on the other passengers' faces, the flight attendants overwhelmed by cleaning up the mess. The bathrooms on airplanes are supposed to be minuscule, too. What if, instead of puking, I just had to pee like a normal person but got stuck in there, and they had to get me out with the Jaws of Life? Do they even carry the Jaws of Life on airplanes?

Mom sighs and watches me chew at a hangnail. “Just think about Berkeley,” she says. “Okay? Will you do that?”

I look away and nod like I'm in agreement, but the truth is, I'm done thinking about Berkeley. It's not going to happen.

 

33

AGNES

DAY 68: APRIL 18

Sometimes I lie very still in my bed and pretend I never existed. I'm not afraid when I do this, because death isn't a real thing for people who don't exist. And sometimes, on nights when pretending I never existed doesn't work, the thought of dying is still okay. Let's face it: when you're a kid with a rare genetic disorder for which there is no cure, worrying about death is just wasted energy. Sure, there have been some major advances—advances bordering on miracles, even. But the outcome for kids like me is still a given. Our blood vessels are going to age at warp speed, and our arteries are going to get progressively more rigid and clogged up until the day a heart attack or stroke takes us down. Once I started to grasp the inevitability of that fate, I realized dying might be my gift, my talent. Maybe I was born to be a death prodigy.

Other times, though, I can't even think about not being here anymore. There's no good way to describe how scary and lonely it feels when you're reminded how fast your clock is ticking compared to everyone else's. It usually upsets other people to talk about it, too. Nobody really knows what to say. It's those other people I always end up thinking about most, the people I'll leave behind. My parents. Moira. My siblings. And now Boone, too, I guess.

I remember being at the park in early spring with Mom when I was a little kid, maybe six. On our way to the bathroom we found a newly hatched chick on the ground. It was a robin or a swallow probably. I remember how Mom looked up, as if being able to identify where the chick had fallen from would solve anything. We could see the nest high above us, in a branch. Mom cradled the naked baby bird in her hand, blew on it to see if … but no. It was definitely dead.

“Go ahead,” she told me, gesturing with her chin toward the bathroom. “I'll be out here taking care of this.”

When I came back out, she was squatting near a fresh mound of dirt, tamping it into place with her fingers. Burying that tiny creature made her go stony for the rest of the day.

*   *   *

“I want to donate my organs to science,” I tell Moira when she picks me up Monday morning for the drive to school.

“Jesus, Agnes. Good morning to you, too.”

“Well, I do. I want them to figure out this disease.”

Moira sighs. “I know you do. I'm sorry. It's just…”

“You have to tell my mom. It'll kill her coming from me.”

“Are we seriously having this conversation right now?”

“Promise,” I insist, holding my pinkie finger in the air between us.

Moira sighs again, louder this time. “Fine,” she says, hooking her pinkie around mine.

 

34

BOONE

DAY 67: APRIL 19

I'm standing at her bedroom door, one ear near the wood. A minute ago, I heard sobs. Now I touch one knuckle to the door and knock, but just barely. This is always the moment when I am my most careful, refined self. Like a well-behaved boy in church. “Mom, can I get you anything?”

No answer.

“I'm going to go feed Diablo,” I say to the door, “and then I'll be back.”

Technically, Diablo is her horse, but I'm the only one who takes care of him now. There's a memory stored away in the back of my mind from when I was only three or four. Sometimes, like now, fragments of it appear. I remember playing in the yard under the old oak tree, just tooling around in the dirt. Something made me look up, and when I did, I saw Mom riding Diablo. Both of them were backlit against rays of lowering sunlight, the horse's hooves kicking up dust clouds as they beat out a perfect rhythm in the arena. I didn't know that the two of them were working on flying changes. All I knew was that there was a cadence and a rhythm to what they were doing that was like a celebration, though I couldn't have put it into those words back then. The first time I heard the phrase “poetry in motion,” this was the exact image that came to me. It's one of my earliest, best memories.

My dad didn't have much to do with Mom's horse activities, but he didn't usually complain about them, either. Not at first, anyway. After the brain injury and the rage and the drinking changed him, though, he started saying things like, “Damn horse is nothing but a liability, eating us out of house and home.” I knew it hurt Mom to hear this. For one, there was truth in it, at least during the colder months when Diablo couldn't pasture graze and my parents had to buy hay. But Diablo provided income as a lesson horse. In that sense, the poor beast carried all three of us.

Plus, the lessons were an area where I could help out, and it made me feel good to do that. Over the years, Mom showed me how to clean saddles and bridles with saddle soap from a big tin before rubbing the leather down with neatsfoot oil. I learned how to paint the wooden cavalletti poles that Mom used to encourage horses to round their backs and to get the youngest students ready for their first jumping lessons. When I was twelve, she even taught me how to drive the Chevy. That way, I could drag the arena by towing a chain-link gate behind the truck in big, slow, swooping circles to level out the footing.

Several of her students trailered their own horses to our place for lessons, but not all of them had their own mounts. Fortunately, we had a pony at the time in addition to Diablo. Her name was Cherokee, and she was a little Shetland cross Mom had rescued from a bad situation. Often, I'd get Cherokee ready for lessons with the younger kids. Sometimes, I'd even teach the beginner lessons myself.