by Susan Haas
PENELOPE EDITIONS is an imprint of Penny Candy Books
Young adult & middle grade books with guts & vision
www.penelopeeditions.com
Oklahoma City & Greensboro
Text © 2021 Susan Haas with Lexi Haas
Illustrations © 2021 Shanna Compton
All rights reserved. Published 2021. Printed in Canada.
This book is printed on paper certified to the environmental and social standards of the Forest Stewardship Council™ (FSC®).
Photo of Susan & Lexi Haas: Susan Haas
Design & illustrations: Shanna Compton
Library of Congress Cataloging-in-Publication Data
Names: Haas, Susan Tyler, 1964-author. | Compton, Shanna, illustrator.
Title: The year of the buttered cat : a mostly true story / Susan Haas with Lexi Haas; [illustration, Shanna Compton].
Description: Oklahoma City : Penelope Editions, 2021. | Audience: Ages 10-14 | Audience: Grades 4-6
Identifiers: LCCN 2020056370 (print) | LCCN 2020056371 (ebook) | ISBN 9781734225938 (hardcover) | ISBN 9781736031957 (epub) | ISBN 9781736031957 (kindle edition) | ISBN 9781736031957 (pdf)
Subjects: LCSH: Haas, Lexi--Health. | Kernicterus--Patients--United States--Biography. | Brain--Surgery--Patients--United States--Biography. | Brain damage--Patients--United States--Biography.
Classification: LCC RC387.5 .H23 2021 (print) | LCC RC387.5 (ebook) | DDC 617.4/81--dc23
LC record available at https://lccn.loc.gov/2020056370
LC ebook record available at https://lccn.loc.gov/2020056371
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For Ken, Kali, Kasey, Hannah, and Tucker,
who have lived this story with us.
—SH and LH
“If all my possessions were taken from me with one exception, I would choose to keep the power of communication, for by it I would soon regain all the rest.”
—Daniel Webster
“The ability to speak does not make you intelligent.”
—Qui-Gon Jinn, Star Wars: Episode I,
The Phantom Menace
“The inability to speak does not make you unintelligent.”
—me, Lexi Haas. Just now.
“I just know before this is over, I’m gonna need a whole lot of serious therapy.”
—Donkey, Shrek
CHAPTER 1
Age 13, 24 hours until surgery
After thirteen years and a bazillion appointments, I should be over my fear of doctors. I’m not. I hate how they try to chat you up like you’re friends, then bam! Needle in the arm. Or worse, they leave the room, and when you start to breathe again, they send in someone else to do the dirty work.
I’m not afraid of all doctors. In the Marvel universe, Bruce Banner has like seven PhDs, and yeah, he goes all Hulk when he’s ticked, but you don’t see him chasing down kids with a needle.
For me, the bad guys are the -ists—neurologists, internists, anesthesiologists. Those types. The ones with the pokers.
So it’s kinda twisted that this morning, I’m lying on a hospital gurney in Kansas City, Missouri. I’m a zillion miles from home. I’m wearing one of those gowns that barely covers my butt. And I chose to be here.
Today it’s for “presurgical medical imaging”—basically a photo shoot for my brain. But tomorrow, 6 a.m. sharp, I’m back for the real thing. Elective brain surgery. My second elective brain surgery.
Elective, by the way, is medical talk for one hundred-percent optional. And also for bring on the needles. Like I said, it’s kinda twisted.
Unfortunately, I have a gifted memory, so all my needle sticks are stored in my brain like hundreds of movie clips. But the only one that really matters is the one that’s about to happen any minute.
There’s a little opening between the curtains in my cubicle where I can see nurses, techs, and -ists marching around pre-op like stormtroopers on the Death Star.
I focus on breathing and—okay, don’t laugh—squeezing my rock. It isn’t an actual rock. Obviously. These people stripped every personal thing from me for “safekeeping” when I got here. But at least for now, they didn’t take my memories, and that is what my rock is. The real one was a gift from my friend Anna when we were little kids. She pressed it in my hand and curled my fingers around it. I squeezed that rock until every bump, every corner, burned into my memory. Now, when I need to quiet my brain, I can go back and squeeze my hand hard enough, and the memory floods back. Nobody is gonna take that from me.
Mom must know I’m obsessing because she pulls the curtain closed and turns on my iPad. “How about some fanfic? What goes best with long hospital waits—Star Wars? Marvel? Wizarding?”
Before I can answer, a nurse charges into my curtained cubicle. She slams into my wheelchair, sending my service dog, Gus, scrambling for a corner.
Perfect. The entire Galactic Empire is out there, and they send in Jar Jar Binks.
“Good morning! We’ll get that IV started soon, but first, sign and date.” She hands Mom a clipboard without even a glance towards me.
I take a deep breath and force air from my lungs. What comes out is ggguuhhh. It sounds like a pencil sharpener. Or an angry dog. Or maybe an angry dog sharpening a pencil.
I’m guessing the nurse has gone with “angry dog.” She spins around and looks at me like I might bite.
“That growl means no,” Mom says. “I think she wants to sign the release herself.”
The nurse clears her throat. “Sorry, sweetie, this has to be signed by an adult. Are you over eighteen?”
She knows the answer. Not only am I “fun-sized” as my brother and sisters say, this is a children’s hospital.
I growl again. Ggguuhhh.
“I didn’t think so,” the nurse says.
“How about if we both sign it?” Mom asks. She smooths my long, dark braids.
I stick out my tongue. The nurse narrows her eyes.
“Tongue out means yes,” Dad says, glancing up from his phone.
“Excuse me?”
Dad shrugs. “She came up with those herself when she was a little kid. The growl thing means no, and sticking her tongue out means yes.”
Usually, I add in my head. It USUALLY means yes. Sometimes it doesn’t.
The nurse nods and smiles—a bright, happy, totally fake smile.
Dad props me against his shoulder. Mom puts the pen in my hand and holds my wrist steady. I write Lexi Haas.
Underneath, Mom writes Susan. When the nurse coughs, Mom adds our last name.
“Alrighty then,” the nurse says. Her lips purse so thin they all but disappear into her face. “Someone will be in soon for that IV.”
I know what she’s thinking. What everyone is thinking. You’re doing this AGAIN? The last one either didn’t work or something went horribly wrong.
Okay. Fair enough. But here’s the thing: it did work. Sort of.
Before the first operation six years ago, I could control exactly two muscles—one that extended my pointer finger and one that stuck out my tongue. Since then, with lots of help, I can walk. If someone holds my wrist steady, I can even play video games.
My voice is better too. Before, I only had a few sounds I could make on purpose. Of course, there was my ggguuhhh. When I got excited, that got all high-pitched and sounded exactly like Chewbacca, which was amazing, but I couldn’t control it. Besides that, I had a squeal, a groan, and (#humblebrag) an impressively loud burp when I hyperventilated. Sometimes, out of the blue, I would blurt out a completely clear word or two, but I had zero control over when that would happen. Boy did that lead to some interesting situations.
Now, if I suck in air until my lungs are about to burst, then let it out nic
e and slow, I can usually puff out a couple of words before I’m out of breath. It’s a neat trick, but so far only my family can understand me, and when I’m tired—like this morning—it doesn’t work at all.
“Good morning!” a new nurse says. “I’m here to go over tomorrow’s procedure and get Lexi’s IV started.”
She’s pushing a cart so big that it swallows my cubicle.
Gus dives between Dad’s legs and lets out a very loud fart. He does that sometimes when he’s nervous.
“Oh … Wow,” Dad says, putting a hand over his mouth and nose. “We can’t even crack a window.”
The cart makes me nervous too, but I can’t help but laugh.
New nurse pulls up a page on her computer and starts to read about “tomorrow’s procedure.” I tune out. They’re going into a different part of my brain, but otherwise it’s the same surgery as last time so I know how it’s going down:
The surgeon will drill a hole in my skull. He’ll drop in two wires, and over the course of eight to ten hours steer them towards the center of my brain, which I know, I know sounds more like ice fishing than brain surgery. Then he’ll connect those wires to a stimulator implanted in my stomach, and that stimulator will send constant electric pulses up to my thalamus.
For the rest of my life.
Oh, and there’s one other thing. I’ll be awake while they do it.
For the surgeon to hit the millimeters-wide spot in my brain with the millimeters-wide electrodes on the end of those wires, the doctors have to ask me questions during surgery. And I have to answer.
“Lexi, can you move your hand?” and I’ll wiggle my finger.
“Lexi, can you open and close your eyes?” and I’ll blink.
“Lexi, do you feel any strange sensation?” and I’ll point to the card that says “No,” but in my head, I’ll add, Nothing but the ice fishing contest going on up there.
“Any questions?” New nurse asks me.
I’m guessing she’s asked more than once, because Mom is poking me in the ribs.
Ggguuhhh.
“No,” Mom interprets. “She doesn’t.”
“Then let’s get on with that IV. I just need to peek at your ID band first.”
She picks up my wrist and examines the plastic bracelet I got when I checked in this morning.
“Charlotte, North Carolina! You’re a long way from home, aren’tcha?”
I stick out my tongue as Mom launches into the explanation I’ve already heard three times today. She’ll tell her it’s because of Steve Shapiro.
The nurse’s eyes will brighten, and she’ll say, “You mean Doctor Shapiro? As in Head of Neurology Doctor Shapiro?”
Mom will nod and tell her how Steve has been my doctor since I was a baby.
What she probably won’t say is that she and Dad have brought me out here every year since he left the East Coast. She definitely won’t tell her that once you find an -ist you trust you don’t let something silly like a half a country stand in your way. I wish she would.
As Mom talks, I turn my attention to the cart. There’s a computer monitor and next to that, a stuffed bear wearing scrubs.
That bear is for sure a decoy. A small peace offering before they inflict pain. In fact, it should be right about … Bingo. On a small tray, sticking out from under a surgical cloth. The needle. I’m thirteen. Why do they think they can fool me with a toy?
“Someone will turn off her stimulator before the MRI, right? Because that has to be done. It has to be off before she enters the MRI.” Mom’s pacing while she talks.
New nurse is tapping away on her keyboard. She doesn’t look up but nods and smiles. I bet she’s thinking, You’ve already told five people, lady. Just chill.
But Mom will never chill. Not in the hospital. Not in the -ist factory. She’ll check and recheck every chart entry, every order. She’s a medical writer, and dad’s a chiropractor, but the funny thing is, they don’t like -ists any more than I do.
Dad, however, is pretty much always chill. He’s slouched in a purple recliner scrolling through his phone with his T-shirt pulled up over his nose as a fart filter. He has jumped out the window via the internet.
His phone pings. He stares at it for a second then sits up straight.
“Of your thousands of friends, Lexi, every single one seems to have an opinion about this surgery. I’ll bet you’ll never guess what this one says.”
Okay. Let’s get one thing straight: I do not have thousands of friends. Online I have a few thousand Facebook and Twitter followers who have been around since my first surgery. In that world I’m well known, kinda like a popular girl in a big school, but who really knows that girl? Who’s really friends with her?
In the real world, I’m homeschooled. I have Anna and Elle Trejo, who are sisters, and of course my three sisters, Kali, Kasey, and Hannah, and my brother, Tucker, and maybe a few other close friends. Other than that, I’m practically invisible. When you sit below everyone and can’t talk, it’s easy for people to forget you’re even there. But online, especially if your Dad posts pictures of Every. Move. You. Make. (insert grimace emoji), you pop up on feeds and ta-da! Like Harry Potter pulling off his invisibility cloak, people see you. And when they see you, they have opinions.
Still, I need those messages. For one thing, while I’m here, Facebook is the only way I can talk to Anna and Elle. I’m pretty sure we are the last three teenagers on the planet who don’t have cell phones yet. Our moms say we don’t need them (double grimace emoji).
I uncurl a finger to point at Dad’s phone.
Dad clears his throat. “Claudia in New Hampshire writes, ‘Why would you put this sweet girl through this again?’”
I arch and my arm flails. I’m not sweet, I’m thirteen, and this was my decision.
Gus swoops in like he’s having a superhero fantasy. He leaps on the gurney, plops his sixty-five pounds across my chest, and drapes a paw over my arm.
He smiles at me—I swear he does smile—and thumps his thick, black tail as if to say, “Stopped the arm before it took over Gotham. You’re welcome.”
I laugh. This dog has a problem with personal space, but he’s great for distraction.
New nurse makes a final, dramatic strike on her keyboard then claps her hands. “I’ll grab a tourniquet, and we’ll get that IV underway. Oh, this is for you!”
She tucks the bear in the crook of my arm. The curtain billows behind her like a cape. In my head, I hum the Darth Vader theme song.
“Well, tons of people care about this girl, and I get it, but I don’t even know where to start with that message,” Mom says. She puts the bear back on the cart.
Truth. Where to start. Every part gets under my skin. I will not be the little disabled girl who people do stuff to. Or be pitied like I’m some sort of Tiny Tim.
“They’re just concerned,” Dad says. “I think everyone wants to know what we—what she—expects from this surgery and that she’s … you know, managing expectations.”
Managing expectations? I’ve had a lifetime of that! Twenty-four hours before elective brain surgery is not the time for “cautious optimism.” It’s the time to let your imagination race around the hospital like a wild, bucking filly, daring anyone to try and harness it, because that’s what gets you through. That’s what allows you to roll through the operating room doors while your parents hold each other and wave goodbye. Without raging optimism, no one would be able to do these last twenty-four hours.
I’m flailing again, and Gus is having a tough time figuring out which limb to stop first.
Mom grabs my leg. “Ken, maybe now isn’t the time for this discussion.”
New nurse is back, holding a blue elastic cord and alcohol swabs. She picks up my arm and thumps at the vein near my wrist like Mom does when she’s picking cantaloupe at the grocery store. She ties the tourniquet near my elbow and thumps some more.
Gus edges closer and licks my hand. He knows what comes next.
New nurse tears
open an alcohol prep pad, and a familiar, prickly odor overwhelms the cubicle. My eyes water. It’s only partly from the smell. For me, isopropyl alcohol is a prepackaged, premeasured dose of confrontation. It reminds me of where I’ve been, where I need to go, and what I have to do.
I want to dive under the table, but obviously I can’t, so I dive into my thoughts. Why ARE you doing this again? People want to know! I want to know!
There’s my joke answer—I want to walk and talk and beat my brother at Minecraft—but that’s the answer I give when I don’t want to get into the real reason, the real story. That story goes way back—much further than this surgery or even the last one. The real story honestly began when I began.
In my earliest days, something terrible happened—something criminal. It left me with this crazy body. And without a voice. It would be years before I pieced together the evidence and learned the truth.
The cold alcohol pad hits my wrist. The sharp smell jabs at me. Hurry, hurry. Tell this now. Before tomorrow. Before you roll back to surgery. So much can happen in there.
C’mon, Lexi, focus. The real reason involves a prophecy, a theft, a buttered cat, and, most of all, an Epic Reasoning Fail. But before all that were the fragmented memories of my earliest days.
“Okay, Sweetie. You’re going to feel a little stick …”
Deep breath in. My story. My evidence. Breath out.
CHAPTER 2
Before Age 2, Memories
Everyone has memories. No … wait. Nearly everyone. There are people who get sick or injured and wake up without a memory. I keep reminding myself that this rarely happens. Also rare: people who can remember everything. And that is me. My family knows my memory is basically my superpower, but even they don’t know the whole of it.
The fact is, from age two, I can remember everything that has ever happened to me. Everything I have seen. Everything I have read. Everything.
This superpower or gift or whatever you want to call it showed up, out of the blue, around my second birthday. Remembering everything makes you a fast learner. The first thing you learn is that you do not want to remember everything. The second thing you learn is how to tune stuff out. Some people confuse this with Attention Deficit Disorder. It’s not. It’s Active Nonremembering. And it’s a skill, not a disorder, thank you very much.