Somebody Up There Hates You

For all the kids I came to know at Babies Hospital, Columbia-Presbyterian Medical Center, 1976–1990. Your faces fill my dreams and your voices still echo in my ears.

Wait for death with a cheerful mind.

Marcus Aurelius,
Meditations

Contents

Part I

1

2

3

4

5

6

7

Part II

8

9

10

11

12

13

Part III

14

15

16

17

18

Acknowledgments

Questions for Discussion

Part I

OCTOBER 30 - NOVEMBER 1

1

I
SHIT YOU NOT.
Hey, I'm totally reliable, sweartogod. I, Richard Casey—aka the Incredible Dying Boy—actually do live, temporarily, in the very hospice unit I'm going to tell you about. Third floor, Hilltop Hospital, in the city of Hudson, the great state of New York.

Let me tell you just one thing about this particular hospice. Picture this: right in front of the elevator that spits people into our little hospice home, there is a
harpist.
No joke. Right there in our lobby, every damn day, this old lady with white hair and weird long skirts sits by a honking huge harp and strums her heart out. Or plucks, whatever. The harp makes all these sappy sweet notes that stick in your throat.

How weird is that? I mean, isn't that, like, a bit premature? Hey, we're not dead yet. But it's pretty amusing at times, in its own strange way, this whole harp thing. I can sit there in my wheelchair, on a good day, and watch people get off that elevator. They're here to visit their dying somebody and they walk right into our little lobby and that music hits them and they sort of stumble and wobble, go pale. They have got to be thinking, just for a second, that they've skipped right over the whole death and funeral mess and gone straight to heaven. Most of them back up at least three steps, and some of them actually press the elevator button or claw at its closed doors, trying to escape. It's easy to read their minds:
they're
not the ones dying, right? So why are
they
here? How did
they
end up in harp-land? It freaks them right out, and I just have to laugh. The nurses tell me that harp music is soothing and spiritual and good for the patients. Okay, I say, fine. Maybe for the 95 percent of the patients who are ancient, like sixty and above, it's good. But what about for me? Or Sylvie? Me and Sylvie, I say, we're
kids.
We're
teenagers
and we're dying, too, and what about
our
rights?

Okay, that's kind of harsh, I admit. Because the nurses really are sort of cool and they get all teary when I say that, because no one, and I mean no one, wants to think about kids dying. But we are, so I say,
Deal with it.
Everybody dies, dudes and dudettes. That's the name of the game.

But that's not what I want to talk about, really. Dying is pretty boring, if you get right down to it. It's the living here that's actually interesting, a whole lot more than I ever would have imagined when I first got tossed in here, kicking and cursing.

Anyway, there is some mad stuff that goes on. Like what me and Sylvie did, night before Halloween, right in front of that elevator. It was classic.

Okay, so maybe I better explain. My grandma—who isn't as old as you'd think, because the women in my family have babies real young, by mistake mostly—once told me that in New Jersey, when she was a kid, there was this amazing night-before-Halloween thing that they called Cabbage Night. On this night, parents actually
sent
their kids out into the night to go crazy. Grandma says that there was only one Cabbage Night rule in her house: be home by midnight. Even on a school night! I mean, you can do a whole lot of very bad and very funny stuff between sunset—let's say around six—and midnight, right? Here's Grandma's list of stuff they'd do: run through people's yards and leap over their fences, screaming like banshees; throw eggs at everything and everybody in sight; put dog poop in paper bags, light the bags on fire and throw them on someone's front porch, then watch the homeowner, usually the dad if there's one around, stamp out the fires and spray himself knee-deep in shit; hit kids with sacks of flour until everybody is white as ghosts; steal anything that strikes your fancy and isn't nailed down; tip over gravestones; tie nerdy kids to gravestones and leave them there until about 11:58; break empty beer bottles— after you drink the beer somebody's cool uncle bought you—on curbs and threaten to cut other kids' throats; set out nails point-up on the streets, hoping to pierce car tires; and—well, whatever kids could think of. I mean, it's just so unbelievable to me that the parents
let
this stuff go on, year after year. Grandma says that when she was a kid, she came home at midnight every year bruised, covered in yolk, flour and beer, half-drunk and all the way exhausted. And here's the best thing: no one
cared.
In fact, her parents hadn't even bothered to wait up for her. Grandma says her folks figured, what the hey, better the kids get this shit out of their systems once a year than dribble out bits of badness every other day on the calendar. So they just said, “Go ahead on and get it over with. Just don't kill anybody, okay?”

I swear, this is all relevant to me and Sylvie's own little Cabbage Night performance because, as I believe I mentioned, we're
kids,
hospice hostages or not.

Luckily, that was one of the days that Sylvie was feeling strong enough to get up. Or she
made
herself strong enough, because I'd been bugging her for three days, telling her how funny this whole thing was going to be. Anyway, we waited until 5:30
P.M.,
October 30. The harp lady knocks off, unless someone requests her services, at 5:00
P.M.
And 5:30 is when most of the long-faced loved ones show up to visit. And the nurses are real busy with supper trays and whatnot. So here's what we did.

We donned our preplanned, not-so-gay attire in our separate rooms, and then we wheeled ourselves quietly into the little lobby and we took up the harpy's usual space. We sat in our wheelchairs with, like, insane death mask makeup on our faces—pale green with big black circles around our eyes and streaks of red dripping from our lips. (One of Sylvie's little brothers brought her a vampire makeup kit and had the sense to keep his trap shut about it. Good kid.) And we had my collector's item Black Sabbath T-shirts on, and Sylvie—it surprised me that she had the energy, but the girl was really into it, I guess—she had made a big red devil fork thing out of an IV pole. She'd actually painted the whole thing with nail polish, a real project, and she was holding on to that. And I'd put one of my uncle's rave tapes—all screaming cool distortion—into the CD player on my lap, and we blasted that sucker every time some poor fool stepped off the elevator. And I held up my sign—GOING DOWN—THIS MEANS
YOU
!!!!!—written in fake flames. Whenever somebody gasped and backed up, me and Sylvie, we cackled and screeched like insane demons.

Okay, so it was just a childish joke. Funny as all hell, though. But Sylvie—that girl is much tougher than you'd think, given she's about five feet nothing and bald—she took it maybe a smidge too far. See, she'd planned something she didn't tell me about, something totally in the Cabbage Night tradition that she'd come up with on her own and kept quiet about. And she pulled it off without blinking an eye.

Here's what Sylvie did: she reached behind her back and pulled out a cigarette lighter and three boxes of Kleenex. She was quick as anything. She clicked the lighter and lit those babies up—one, two, three—and threw them down on the floor. No shit! Real flames, shooting all over the place. For about one millisecond. Then all hell really did break loose. Nurses and doctors and custodians and volunteers and counselors and food service dudes and probably the priests and rabbis, too—there are always about six guys in black wandering our little hallway—they all came running and shouting, and about nine thousand feet stomped out those three little fires.

And me and Sylvie, we howled. We laughed our asses off, nearly fell out of our chairs. We just could not stop, even when everyone started yelling at us and telling us to go back to our rooms and not come out again. Because that was even funnier—them sending us to our rooms like little kids. Some punishment. I mean, what were they going to do, kill us? Sentence us to death?

But, really, the best part for me was when one of the visitors, Mrs. Elkins's son—I know him, I played gin rummy with him in the visitors' lounge once—grabbed me by the arm and screamed in my face: “What's the
matter
with you, Richie? Where's your respect? What the hell is the
matter
with you?”

And I got to say one of my favorite lines, the one I pull out umpteen times a day, whenever some new priest or therapist or rabbi or nurse or intern or floor-washer or visitor or whoever asks me what's wrong with me. They can't ever seem to quite get it. Obviously, I'm way too young to be here, so what's the story? Here's how these conversations always play out: They go, “Why are you here? What's wrong with you, son?” And I go—straight face, big innocent eyes—“I have SUTHY Syndrome.” And when they go all blank and say, essentially, “Huh?” I get to say it again. “SUTHY Syndrome. It's an acronym.” Some of them don't even know what that means, but I always wait a beat and then spell it out: “I've got Somebody Up There Hates You Syndrome.”

You know, it's really a pretty good diagnosis, don't you think? For me, for Sylvie, for anybody our age who ends up here and places like it, usually after what our obits will soon call a “courageous battle with fill-in-the-blank.”

How else you going to account for us? SUTHY is the only answer that makes any damn sense.

***

Anyway, that was the last time I saw Sylvie come out of her room for a couple days. I think it took a lot out of her, all that preparation and excitement. I mean, I can't pretend to know the girl all that well since we just met when we both ended up here. I got here first, and she showed up a day or so later, and we met in the hall and both asked, exactly the same minute, sweartogod, what all of us long-term hospital brats ask one another: “What you in for, man?” And she said—because, like I said, she's tougher than me, really, and never beats around bushes—“I'm here because the shitheads think I'm dying. But I'm not.” And I said, because I get, like, tongue-tied sometimes around girls, especially cool ones like Sylvie, I said, “Yeah, me too.” But I didn't know which part I was “me too-ing”—the dying or the not. It's sometimes not so clear-cut as you'd think, despite the term
terminal.
I mean, who can really say?

Anyway, at least Sylvie got to get in trouble on Cabbage Night, like any un-SUTHY-stricken kid. When her family arrived on the scene, her father bawled her out for, like, an hour; I heard him. Then he lashed into the little bro who'd supplied the makeup, and the kid ran out of Sylvie's room like a scared rabbit. That man has one mad-ass temper. Sylvie's mother yelled at her, too, and then sat in the hall and cried.

But let me say this right now: it was
so
worth it. Those flames, for just a second, they were real. Hot and bright and totally real, and for a few minutes afterward you could smell smoke instead of stale hospital air. Real smoke. And, hey, Sylvie got to wear makeup, and that was a real plus. I know she liked the makeup. She's a girl, you know, even if she looks like some Halloween joke now all the time. At least I can still see her, the real girl under the death mask.