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The Memory Book
By Lara Avery
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Perfect for fans of Everything, Everything and Five Feet Apart, a bittersweet story of love and loss, told one journal entry at a time.
Sammie McCoy is a girl with a plan: graduate at the top of her class and get out of her small town as soon as possible. Nothing will stand in her way-not even the rare genetic disorder the doctors say will slowly steal her memories and then her health.
So the memory book is born: a journal written to Sammie’s future self. It’s where she’ll record every perfect detail of her first date with longtime-crush Stuart, and where she’ll admit how much she’s missed her childhood friend Cooper. The memory book will ensure Sammie never forgets the most important parts of her life-the people who have broken her heart, and those who have mended it. If Sammie’s going to die, she’s going to die living.
Table of Contents
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THE MEMORY BOOK
If you're reading this, you're probably wondering who you are. I'll give you three clues.
Clue 1: You just stayed up all night to finish an AP Lit paper on The Poisonwood Bible. You fell asleep briefly while you were writing and dreamed you were making out with James Monroe, the fifth president and arbiter of the Monroe Doctrine.
Clue 2: I am writing this to you from the attic at the little circular window, you know the one, at the east end of the house, where the ceiling almost meets the floor. The Green Mountains have just recently turned green again after a freakish late-spring dump of wet, sloppy snow, and you can just barely see Puppy in the early dark, doing his morning laps up and down the side of our slope in his pointless, happy Puppy way. Sounds like the chickens need to be fed.
I guess I should do that. Stupid chickens.
Clue 3: You are still alive.
Do you know who you are yet?
You are me, Samantha Agatha McCoy, in the not-so-distant future. I'm writing this for you. They say my memory will never be the same, that I'll start forgetting things. At first just a little, and then a lot. So I'm writing to remember.
This won't be a journal, or a diary, or anything like that. First of all, it's a .doc file on the tiny little laptop I carry with me everywhere, so let's not get too romantic about this. Second, I predict that by the time I'm done with it (perhaps never) it will exceed the length and breadth of your typical journal. It's a book. I have a natural ability to overwrite. For one, the paper on The Poisonwood Bible was supposed to be five pages and turned out to be ten. For another, I answered every possible essay question on NYU's application so the admissions committee could have options. (It worked—I'm in.) For another, I wrote and continually edit Hanover High's Wikipedia page, probably the longest and most comprehensive high school Wikipedia page in the country, which is funny because technically I'm not even supposed to go to Hanover High because as you know (I hope), I don't live in New Hampshire, I live in Vermont, but as you also know (I hope), South Strafford is a town of five hundred and I can't go to the freaking general store for high school. So I bought Dad's old pickup on an installment plan and found some loopholes in the district policy.
I'm writing this book for you. How can you forget a thing with this handy document for reference? Consider this your encyclopedia entry. No, consider this your dictionary.
Samantha (proper noun, name): The name Samantha is an American name, and a Hebrew name. In English, the meaning of the name is "listener." In Hebrew, the meaning of the name is "Listen, name of God."
Listen, name of God, this isn't supposed to be a feelingsy thing, but it might have to be. We tried emotions in middle school and we didn't care for them, but they have snuck back into our life.
The feelings came back yesterday in Mrs. Townsend's office.
Mrs. Townsend (proper noun, person): A guidance counselor who has allowed you to test into all of the advanced classes you wanted to take even if they didn't fit your schedule, and has made you aware of every scholarship known to woman so that you don't have to bankrupt your parents. She looks like a more tired version of Oprah, and with the exception of Senator Elizabeth Warren, she is your hero.
Anyway, I was sitting in Mrs. Townsend's office, making sure that I hadn't missed any deadlines because Mom and I had to go to the geneticist in Minnesota two times in the past month. I didn't even get a real spring break. (I type that as if I've ever had a spring break, but I was hoping to get some major prep in with Maddie, Debate Nationals being just a month away.)
I will try to reconstruct the scene:
White walls covered in old MILK: IT DOES A BODY GOOD posters, left over from the last guidance counselor because Mrs. Townsend has been so busy since she started five years ago, she hasn't had the chance to replace them. Me, on a carpeted block that was supposed to be a cool, modern version of a chair but is really just a block. Across from me, Mrs. Townsend, in a yellow sweater, her hair jetting out in thick black curls.
I was asking her to get me a twenty-four-hour extension on the Poisonwood Bible paper.
Mrs. T: Why do you need an extension?
Me: I've got a thing.
Mrs. T (staring at her computer screen, clicking): What thing?
Me: Google "Niemann-Pick Type C."
Mrs. Townsend types, and begins to read.
Mrs. T (muttering): What?
I watched her eyes move. Right, left, right, left, across the screen. I remember that.
Me: It's very rare.
Mrs. T: What is it, Neeber Pickens? Is this a joke?
I had to laugh in spite of her face scrunching up, still reading.
Me: Niemann-Pick Type C. Basically, it's dementia.
Mrs. Townsend takes her eyes off the computer, her mouth hanging open.
Mrs. T: When were you diagnosed with this?
Me: Two months ago, initially. It's been a back-and-forth process to confirm. But yeah, I have it for sure.
Mrs. T: You're going to have memory loss? And hallucinations? What happened?
Me: Genetics. My great-aunt died of it when she was much younger than I am now.
Mrs. T: Died?
Me: It's common among French Canadians, and my mom's originally French Canadian, so…
Mrs. T: Excuse me, died?
Me: I'm not going to die.
I don't think she heard the part about me not dying, which is probably for the best, because at this point it is a statement I can neither confirm nor deny. What I do know, which I forgot to tell Mrs. Townsend (sorry, Mrs. T), is that people my age who exhibit symptoms (without having it when they were younger) are extremely rare. Usually kids get it very young, and their bodies can't handle the strain. So we're looking at a "different timeline," the doctor said. I asked if this was good or bad. "At the moment, I believe it's good."
Mrs. T (hand on forehead): Sammie, Sammie.
Me: I'm okay right now.
Mrs. T: Oh my god. Yes, but… are you seeing someone? How are your parents handling this? Do you need to go home?
Me: Yes. Fine. No.
Mrs. T: Tell them to call me.
Mrs. T (throwing up her hands): And you told me this by asking for an extension on your AP Lit paper? You don't have to write it, for god's sake. You don't have to do anything. I can call Ms. Cigler right now.
Me: No, it's okay. I'll write it tonight.
Mrs. T: I'm happy to do it, Sammie. This is serious.
Yes, I guess it is serious. Niemann-Pick (there are three types—A, B, and C—and I have C, commonly called NPC, the only C I've ever gotten, ha ha ha) happens when the wrong kind of cholesterol builds up in the liver and spleen, and as a result, blockage collects in the brain. The buildup gets in the way of cognition, motor function, memory, metabolism—the works. I don't have any of that yet, but I have been exhibiting symptoms for almost a year now, apparently. It's interesting the names they put on stuff I thought were just weird tics. Sometimes I get this sleepy sensation after I laugh: That's cataplexy. Sometimes when I reach for the saltshaker, I miss it: That's ataxia.
But all of that is nothing compared to losing my memory. As you know (ever hopeful!), I'm a debater. Memory's kind of my thing. I wasn't always a debater, but if I hadn't become one four years ago, no joke, I would probably be addicted to weed. Or erotic fan fiction. Or something like that. Let me tell you the story:
Once upon a time, Future Sam, you were fourteen, and you were tremendously unpopular (still true) and felt alienated and like there was not a place for you in high school. Your parents wouldn't buy you cool clothes, you were the first one out in dodgeball, you didn't know you were supposed to say "Excuse me" after you burped, and you had become a human encyclopedia of mythical beasts and scientifically impossible space vehicles. Stated simply: You cared more for the fate of Middle Earth than actual Earth.
Then your mom forced you to join a club, and debate team was the first table at the club fair. (I wish it were more epic than that.) Anyway, everything changed. The brain you used to employ memorizing species of aliens you used instead to memorize human thought, events, ways of thinking that connected your tiny house tucked in the mountains to a huge timeline, one just as full of injustice and triumph and greed as the stories you craved, but one that was real.
Plus, you were good at it. After all those years of devouring books, you could glance at a passage and repeat it verbatim ten minutes later. Your lack of politeness was to your advantage, because politeness isn't necessary in getting your point across. Debate made you realize you didn't have to lose yourself in invented worlds to experience life outside the Upper Valley. It gave you hope that you could be yourself and still be part of the real world. It made you feel cool (despite still being unpopular). It made you want to do better in school, so that once you reached the real world, you'd be able to actually work on all the issues you debated.
So yeah, ever since then, I have counted myself proudly among the people who roam the halls of high schools on a weekend, talking to themselves at a million miles an hour about social justice issues. Yes, the weirdos who decide it might be a fun idea to read an entire Internet search yielding thousands of articles on Roe v. Wade and recite them in intervals at a podium across from another person in a battle to the rhetorical death. The ones who think they are teenage lawyers, the ones who wear business suits. I love it.
Which is why I haven't quit, even though I'm now kind of stuttery at practice, and I make excuses when I miss research sessions for doctor's appointments, and I have to, you know, psych myself up in the mirror at tournaments. Before this happened, my memory was my golden ticket. My ability to memorize things got me scholarships. My memory won me the Grafton County Spelling Bee when I was eleven. And now it's gonna be gone. This is, like, inconceivable to me.
Back to the office, where I can hear people in the hallway, yelling at one another about stupid shit.
Me (over the noise): It's fine. Anyway, can you give me the name of that NYU pre-law mentorship thing again? I know only college juniors are eligible, but I think I could—
Mrs. T makes a choked sound.
Me: Mrs. T?
Mrs. Townsend pulls Kleenexes from her drawer and starts wiping her eyes.
Me: Are you okay?
Mrs. T: I just can't believe this.
Me: Yeah. I have to go to ceramics now.
Mrs. T: I'm sorry. This is shocking. (clearing her throat) Will you have to miss more school?
Me: Not until May, right around finals. But it will be a quick trip to the specialist. Probably just a checkup.
Mrs. T: You're very strong.
Me (starts packing up stuff, in anticipation of leaving): I try.
Mrs. T: I've known you since you were a little fourteen-year-old with your (puts fingers in a circle around eyes) little glasses.
Me: I still have glasses.
Mrs. T: But they're different glasses. More sophisticated. You look like a young woman now.
Mrs. T: Sammie. Wait.
Mrs. T: You are very strong, but… But considering everything… (begins to choke up again)
At this point, I began to feel an uncomfortable tightness in the back of my throat, which at the time I attributed to a side effect of my pain medicine. Mrs. T really had been there for me since I was a freshman. She was the only adult that actually listened to me.
Sure, my parents tried, but it was only for five minutes, between their jobs and feeding my younger siblings and fixing some hole in our crap house on the side of a mountain. They don't care about anything I do as long as I don't let my siblings perish and I get my chores done. When I told Mrs. Townsend I was going to win the National Debate Tournament, get into NYU, and be a human rights lawyer, the first thing she said was, "Let's make it happen." She was the only one who believed me.
So for what she said next, at the risk of being melodramatic, she might as well have stuck her hand down my esophagus and clutched my heart in her hands.
Mrs. T: Do you think you can even handle college?
Explosions in head.
Mrs. T (pointing at computer screen): This—I mean, I will read up on it more, but—it seems like it affects everything. It could do serious damage.
Me: I know.
And here's the thing. The health stuff I could take, but don't take away my future. My future I had worked so hard to set up so nicely. I have worked for years to get into NYU, and now I was in the homestretch. The very idea that Mrs. Townsend would even consider that I would give it up filled me with rage.
Mrs. T: And on top of that, your memory is going to suffer. How are you going to go to class with all of this? You might—
Mrs. T jumped back. Then it was my turn to begin weeping. My body wasn't used to crying, so the tears did not come out in clean, clear supermodel drops like I thought they would. I shook a lot and the saltwater pooled up in my glasses. I was surprised by the strange whine that came out of the back of my throat.
Mrs. T: Oh, no. No, no. I'm sorry.
I should have accepted her apology and moved on, but I couldn't. I yelled at her.
Me: I am NOT not going to college.
Mrs. T: Of course.
Me (sniffling): I am NOT going to stick around Strafford, riding around on four-wheelers, working at a ski resort and smoking pot and going to church and having tons of children and goats.
Mrs. T: I didn't say that…
Me (through snot): I pushed my way into Hanover, didn't I? I got into NYU, didn't I? I am the valedictorian!
Mrs. T: Yes, yes. But—
Me: Then I can handle college.
Mrs. T: Of course! Of course.
Me (wiping snot on my sleeve): Jesus, Mrs. Townsend.
Mrs. T: Use a Kleenex, hon.
Me: I'll use whatever surface I want!
Mrs. T: Sure you will.
Me: I haven't cried since I was a baby.
Mrs. T: That can't be true.
Me: I haven't cried in a long time.
Mrs. T: Well, it's okay to cry.
Mrs. T: If you ever need to talk to me again, you can. I'm not just an academic resource.
Me (exiting): Yeah, cool. Bye, Mrs. T.
I walked out of Mrs. Townsend's office (perfectly normally, thank you) and skipped ceramics and went straight home to work on my paper until the feelings went away. Or at least until the feelings and me got some miles between us.
I cried because I have never been more scared in my life. I fear that Mrs. Townsend has a point. I envision a vague gray shape that is supposed to be my brain inside my head, but instead it's this blob outside of me, empty, that I won't be able to use.
And I'm tired.
It's like, take my body, fine, I wasn't really using it anyway. I've got this enormous butt on ostrich legs, the hair of a "before" picture, and weird milky brown eyes like a Frappuccino. But not my brain. My true connection to the world.
Why couldn't I wither slowly and roam around on an automatic chair, spouting my brilliance through a voice box machine like Stephen Hawking?
Uggggghhh. Just thinking about it makes me—
I don't know how else to say it right now. And I don't like not knowing. Anything. I don't like not knowing in general. I should always be able to know.
And that's where you come in, Future Sam.
I need you to be the manifestation of the person I know I will be. I can beat this, I know I can, because the more I record for you, the less I will forget. The more I write to you, the more real you will become.
So: I've got a lot to do today. It's Wednesday morning. I've got to read seven articles on living wage conditions. I've got to call Maddie and remind her to read these articles, too, because in her three-year tenure as my debate partner, she has had a terrible habit of "winging it" because she thinks she's God's gift to affirmative speeches. (She is, sometimes.) The dumb chickens still need to be fed. The window is cracked open. I smell dew and cool air coming off the Green Mountains. No one else in my house is up yet, but they will be soon. And look, the sun is rising. At least I know that.
• goes by "Sam" or "Samantha"
• eats only nuts and berries
• wears fashionable glasses (or maybe contacts?)
• wears tailored outfits, only in solid neutrals, blue, or black
• laughs only on occasion and always in a low register
• gets cocktails every week with group of witty, professionally competent women
• reads the New York Times in bed in a soft white robe
• is recognized by people on the street and told that her op-ed on international development changed their life
• goes by "Sammie" because no one will adjust to addressing her as Sam—except for Davy, but with lisp it sounds like "Tham"
• eats anything put in front of her, including fake fruit by accident at a church function
• glasses are okay, just way too "gold" and "huge" and possibly disco
• wears whatever free school-function T-shirts haven't been visibly slobbered on by one of the smaller organisms in the house
• laughs at SpongeBob and fart jokes even when stupid people make them (I can't help it, it's actually so funny)
• closest female friend is Maddie, but I'm not sure if we're really friends or just that she and I spend so much time in the government classroom that we are friends by proxy, and between you and me, her ego is way too off the charts
• reads the New York Times at Lou's when other people throw it out because Mom and Dad refuse to pay for it
• gets high fives from debate team, so at least that's a start
WHAT MRS. TOWNSEND WAS PROBABLY LOOKING AT
From the NPC Wikipedia page:
Neurological signs and symptoms include cerebellar ataxia (unsteady walking with uncoordinated limb movements), dysarthria (slurred speech), dysphagia (difficulty in swallowing), tremor, epilepsy (both partial and generalized), vertical supranuclear palsy (upgaze palsy, downgaze palsy, saccadic palsy or paralysis), sleep inversion, gelastic cataplexy (sudden loss of muscle tone or drop attacks), dystonia (abnormal movements or postures caused by contraction of agonist and antagonist muscles across joints); most commonly begins with turning of one foot when walking (action dystonia) and may spread to become generalized, spasticity (velocity-dependent increase in muscle tone), hypotonia, ptosis (drooping of the upper eyelid), microcephaly (abnormally small head), psychosis, progressive dementia, progressive hearing loss, bipolar disorder, major and psychotic depression; can include hallucinations, delusions, mutism, or stupor.
From Wikipedia, after I edited the NPC page:
Your shit is fucked.
(Was taken down shortly after and all my Wiki editing privileges were suspended, but it was worth it.)
WHITE MALE PHILOSOPHERS WHO (BASED ON THEIR PORTRAITS) I/WE WOULD MAKE OUT WITH
• Søren Kierkegaard: those lips
• René Descartes: I've never said no to a man with long hair
• Ludwig Wittgenstein: the coiffe, the straight nose, the sunken, knowing eyes
• Socrates: that beard though
SHAH DOLCE VITA
When I told you that this wouldn't be feelingsy, I lied. You probably knew that, Future Sam, but maybe you've been able to put a lid on them by the time you read this.
I want Stuart Shah. I want Stuart Shah so bad.
Stuart Shah (proper noun, person): Oh, screw it, I'll just tell you everything.
Picture this: It's two years ago. As a critique of capitalism, you have taken to wearing a lot of vintage (fine, used) clothing, mostly your dad's oversize T-shirts, cutoffs, and your mom's gardening clogs that you took without permission. You are reading a lot of National Geographic articles about how the ice caps are melting and polar bears are being pushed from their usual habitats, and watching a lot of your mom's old DVDs of The West Wing. On this particular day, Ms. Cigler (then your Advanced Sophomore English teacher) has asked you to complete the short-answer questions at the end of a Faulkner story, "A Rose for Emily," about an old lady who sleeps with her dead husband's corpse. Anyway.
Suddenly, a figure passes by your desk. This person has that smell like they have just been outside, you know what I mean? It's a combination of sweat and humid air and grass and dirt, and when you've been inside air-conditioning all day, you can tell from just one whiff they've been outside doing something.
You look up and you see it is Stuart Shah.
You have seen Stuart around before—he's a senior while you're a sophomore, one of those kids who's always eating a sandwich while walking, on his way to the next thing. He's tall and has an old-fashioned, guy-in-the-fifties haircut and dark, wet eyes like two river stones. It appears that he wears the same thing every day, just like you, except he wears a black T-shirt and black jeans and he looks amazing. He's friends with everyone and no one in particular. He played Hamlet in the spring play.
Now he's bending down next to Ms. Cigler, telling her something in a low voice. The corners of his lips turn up in a smile while he's talking. You watch his long fingers twitch from where they prop up his lean arms on the desk.
Ms. Cigler gasps and claps a hand over her mouth. The class looks up from their work. Stuart straightens and folds his arms, eyes on his feet with a shy, half smile still on his face.
"Can I tell them?" she asks, glancing up at him.
Stuart shrugs, looking up at the class, and then at you, for some reason.
"Stu just got a short story published. In an actual literary magazine. A high schooler. I mean… my god."
Stuart lets out a little laugh, eyeing Ms. Cigler.
"Ploughshares is a publication I wish I could publish in, folks. Give this young man a round."
People clap halfheartedly, except for you. You don't clap. Because you are staring at him, your hand holding a strand of your hair. You shift in your chair, leaning toward him. You catch your eyes running up from his lace-up shoes, to his jeans, across his waistband, to his brown neck, his smooth lips, across his eyebrows like black brushstrokes, down to his eyes, which meet yours again.
You turn hot and look down at your to-do list.
He leaves the classroom, and instead of listening to Ms. Cigler, you find yourself tracing a letter S.
Later, you wonder aloud to Maddie about him at debate practice, and she notices your drifting eyes, your fingertips playing on indiscriminate surfaces, your little sighs.
"Sammie McCoy is crushing," Maddie says.
"I'm just curious. You know, like professionally. I wonder what it's like to be published." That word, published. It comes off the lips like an adult drink, like sweet cherry liqueur. It means that Stuart's way of seeing the world is so complete, so sharp, so fascinating that important people want to spread it around.
You want your words to be like that. I mean, not in a fictional story, you could never do that, but in general. You want to be a debater (and then a lawyer) so you can look at the world from above, so you can cut it into neat, manageable pieces and fit problems and solutions together like a puzzle, making it fair for everyone. You want to tell people what is correct, what is real. Stuart is already doing that in his own way, and he's only eighteen.
Over the next year, wherever he goes in the halls of Hanover High, he glows. You make excuses to switch lunch periods so you can watch him pop rolls of sushi into his mouth with his fingers from Tupperware he brought from home, his other hand holding The New Yorker or other publications with important names like The Paris Review or small, worn novels of every conceivable color. You make note of their titles and read them, too, so you can know what scenes are passing through his head. Once or twice he catches you reading the same book he is, in the cafeteria or elsewhere, and gives a little nod of recognition, which sends your lunch swirling.
But eventually he spends less and less time in the halls, and more in the backseats of Jeeps headed to the swimming hole or Dartmouth parties or trips to Montreal with his friends. As he should, you think, because he's cool
Praise for The Memory Book:
* "Sammie's narrative voice is sardonic, distinctive, wildly intelligent, and sometimes hilarious...Readers will feel her mind and heart shifting with the illness. Indelible." —Kirkus Reviews (starred review)
* "Sammie's voice is a bright, relatable, and uncompromising one...Strengths abound in Avery's touching novel, and Sammie's relationships, both friendly and romantic, are no exception...Fans of John Green's work and Jennifer Niven's All the Bright Places will be reaching for the tissue box at the book's tear-inducing end."—School Library Journal (starred review)
* "Avery (Anything but Ordinary) crafts an emotionally charged story about a young woman who has kept her eyes trained on the future, only to learn that all she has is now...Avery's novel stands out for its strong characters, a heartbreaking narrative that shifts to reflect Sammie's condition, and a love story that will leave many readers in tears."—Publishers Weekly (starred review)
* "Avery brings an emotional honesty to Sammie's narrative.... Teens will be inspired by Avery's heart-rending story about a special and intelligent young woman coping with a devastating disease--a story buoyed by the strong love of family flowing through Sammie's narrative and by an exquisite love story in which Sammie experiences happiness with Coop."—VOYA (starred review)
"Avery (A Million Miles Away, 2015) balances humor and devastating sadness perfectly. Sammie's voice is sympathetic but not pitiful as she relates her hopes for the future and thoughts on the past...a story of self discovery that's hard to put down."—Booklist
"A worthy foray into the smart-dying-teen territory of John Green et al...a story that invites empathy, awareness of a tragic disease, and self-reflection for those who still have memories to make."—BCCB
"[A] heartfelt, funny and bittersweet new novel...a memorable read, indeed."—BookPage
"Things you will probably experience while reading this wonderful book: gut-wrenching hope, ugly-crying, the joy of finding beautiful moments in the midst of difficult times. Enjoy."—Adi Alsaid, author of Let's Get Lost and Never Always Sometimes
"Lara Avery's brilliant novel about a girl who learns that her life might be ending--just when it feels like it's finally getting started--will open your heart and very possibly break it. Fierce Sammie McCoy is an unforgettable heroine, and as soon as I closed this book, I started to miss her. I still do."—Emily Raymond, co-author with James Patterson First Love
"In Sammie McCoy, Avery has created a character that completely vibrates with energy. And Sammie's so wicked smart, you almost believe she will overcome everything. But that's not what this book's about. At some point possibility ceases to matter and Avery shows us to love all we already have. Such a moving read."—Geoff Herbach, author of Stupid Fast and Fat Boy vs. the Cheerleaders
- On Sale
- May 9, 2017
- Page Count
- 384 pages