An honest and captivating memoir of the author’s childhood struggles as a result of a brain tumor, only discovered following a near-fatal car accident.
All her life, Emily has felt different from other kids. Between therapist visits, sudden uncontrollable bursts of anger, and unexplained episodes of dizziness and loss of coordination, things have always felt not right. For years, her only escape was through the stories she’d craft about herself and the world around her. But it isn’t until a near-fatal accident when she’s twelve years old that Emily and her family discover the truth: a grapefruit sized benign brain tumor at the base of her skull.
In turns candid, angry, and beautiful, Emily Wing Smith’s riveting memoir chronicles her struggles with both mental and physical disabilities during her childhood, the devastating accident that may have saved her life, and the means by which she coped with it all: writing.
“This incredible journey from an awkward childhood struggle through a brain tumor and near-fatal accident to published writer is heart-wrenching and inspiring. A must-read, especially for anyone who has ever felt like an outsider.”—James Dashner, #1 bestselling author of the The Maze Runner series
"An extraordinary memoir about her life on the outside and how she found her way in." —Booklist
"Smith unapologetically and honestly delivers all the messy details of her hard-won life and, without striving for sympathy, draws readers firmly to her side to applaud her developing successes." —Publishers Weekly
|Publisher:||Penguin Young Readers Group|
|Product dimensions:||5.70(w) x 8.40(h) x 1.10(d)|
|Age Range:||12 Years|
About the Author
Emily Wing Smith received her masters degree in writing for children and young adults from Vermont College and is the author of Back When You Were Easier to Love and The Way He Lived. She lives with her husband in Salt Lake City, where she writes, bakes chocolate chip cookies, and occasionally substitutes at her old high school (which hasn't gotten any less odd).
Read an Excerpt
***This excerpt is from an advance uncorrected proof***
Copyright © 2016 Emily Wing Smith
HOW I’M LIVING STILL
I ask myself: How am I living still?
And how I ask it depends on the day.
Most mornings I wake up Woo-Head. A brief etymology: woozy-head became Wooze-Head became Woo- Head. Woo-Head is this headache hybrid that isn’t made up of different kinds of pain, exactly. It’s dizziness and it’s light-headedness, and it’s a tremble that starts between my temples and comes out the right side of my body. Bad Hand gets the shakes.
Usually I can stand up. I put on my glasses. I stagger to the bathroom mirror and stare into my eyes. Sometimes my pupils are big still and the same size, and I know that Woo-Head will dissipate, so I get ready for the day.
But sometimes my pupils are already constricted even though there’s no light, and my head is spinning so fast, and I fall to the floor. And those are the mornings I ask myself: How am I living still? I take my emergency meds that only halfway help and go back to bed, and this will be a long day, one with no writing and no reading and—How am I living still?
Every once in a great while, though, I wake up and there’s no Woo-Head, and I get out of bed to make sure it’s not a trick. I wash my hair and I tilt my head back and still—no Woo-Head. I think, After everything that’s happened, here I am, washing my hair. There’s no Woo-Head, there’s no pain, and Bad Hand even helps out, rubbing shampoo into my scalp. My fingers gloss over the incision on the back of my head and the scars on the top of my head and nope, no pain, none at all, and I think: How am I living still?
How am I living my dream, being a writer, publishing books and hanging out with writer friends? How am I living with a man who adores me, who never gets fed up with Woo-Head or Bad Hand or demands a normal wife whose pupils are always the same size?
How am I living still? I ask God, but it’s not really a question, because I know Him well enough to know He won’t answer me. Not yet.
How am I living still? I say, and I know He knows that what I mean is: Thank you.
The Children’s Center graduation ensemble, complete with hat.
THE FIRST GRADUATION DAY
It is Graduation Day at The Children’s Center.
I am the only one graduating, but we all wear hats— construction-paper hats we’ve decorated ourselves. I made a green one with a rainbow stretching across it because I love to draw rainbows at The Children’s Center, with a box of crayons that isn’t missing any colors. The stickers underneath it are in a pattern, because even more than I love to draw rainbows, I love patterns. I am seven years old.
Usually I come to The Children’s Center with just my mom, but today is Graduation Day, so Juliana is there, too. Juliana chose a pink crown and put lots of red stickers on it, and she looked happy. But now Juliana isn’t happy. A big sister can tell. And I can tell that Juliana is wondering: Who is this lady? Why is her arm around me?
The lady is Marsha. Marsha used to live in Egypt and once gave me an Egyptian calendar. I pretended I could speak Egyptian for a long time after that, and I would show my calendar to the other kids who lived in Driftwood Park Apartments and speak Egyptian to them.
I’m not like the other kids in Driftwood Park.
Marsha is my friend at The Children’s Center. We play together every week. She has boxes full of art supplies and lets me choose what I want to do. Sometimes we make masks, or paint watercolor landscapes, or try papier-mâché. Whatever I want. One day Marsha said gently, “Why don’t we finish one of the projects we’ve started?” and she showed me the portfolio of half-finished artwork. It made my heart hurt to see them there, forgotten, and I started to cry.
Other times we do puzzles. They are the kind of puzzles that trick you because each question is harder than the last one. I can usually get just as far as we have time for, so I fill up all the time answering, answering, answering. One day Marsha showed me pictures. Each picture was missing something, and I had to tell her what it was. They were easy, like a bicycle missing a wheel or a comb missing one of its teeth. I love that the plastic comb bristles are called teeth, and I love that Marsha looked impressed when I called them teeth. Adults are my favorite people to impress, even though I’m not supposed to call Marsha an adult. At The Children’s Center, you must call adults “big people,” and I try very hard to remember this rule, even though I think it sounds stupid.
Marsha showed me a picture of a teacup. It was a perfect white teacup on a fragile saucer. I imagined a Japanese woman sipping from a teacup like this: sleek black hair done up in chopsticks, face pale and with only a hint of a smile, and nimble fingers curled around the cup’s base. I was so busy imagining that I didn’t remember to answer. When Marsha prompted me, I said: “A design.” This teacup should have a rose design, I thought. A delicate pink rose would be perfect.
I could tell by the small crumpling of Marsha’s face that this wasn’t the right answer. Think, her face said. Think again. But I couldn’t think. I had no idea what this cup—this perfect teacup—was missing. I cried little cries, at first, but little cries always turn into big cries with me. Marsha said that it was okay; we didn’t have to keep going. I wanted to keep going,had to keep going, but I couldn’t say that through the big cries.
Marsha let me be alone. I could hear her in the hall, talking to my mother, but I couldn’t hear what they were saying. Probably that I was a failure. I felt like one. I’d al- ways felt like one. I would probably not get to graduate.
I do get to graduate. And I know why: They don’t want me around anymore. I don’t blame them. Even I don’t want myself around anymore. I have to be around myself, but they don’t. Marsha tells me no, that’s not why. She promises. But it’s funny, how little I believe her.
Even though it makes me sad, it does not make my heart hurt—it is not a big enough sadness to cry about. I will miss Marsha, but now that I won’t see Marsha, maybe my mom won’t see Dr. John, who she talks to while I do puzzles and art projects. Maybe now that I am graduating, Mom won’t be sad anymore—a heart-hurting, big-enough-to-cry-about sad.
It is Graduation Day at The Children’s Center.
Maybe I am all better now.
THE CHILDREN’S CENTER PSYCHOLOGICAL EVALUATION
Age: 6 years, 0 months
Examiner: Marsha R. Blanche, PhD
REASON FOR REFFERAL:
Aggressive, hostile, power struggles with mother
Emily is the oldest child of Robert and Diana Wing. She has a younger sister, Juliana, and a baby brother. Father is an attorney; mother stays home with the children.
Relationship to father is described as good. Mother feels he is not firm enough with her. He does not react to her behavior like mother does. Relationship to mother is tense. Mother feels that Emily’s affection is full of hostility. Mother continually compares Emily unfavorably with her younger sister.
Emily is a tall, slender girl with long brown hair. She did not greet the examiner, nor look at her. She played while her mother was interviewed in the adjacent office, and the two separated without a word to each other.
During the testing, Emily began to draw rather than waiting for test instructions, indicating her need to be controlling. She liked to be praised, though she would not acknowledge it. When the examiner encouraged her to draw, she relaxed somewhat and became more cooperative. She began to smile and all of a sudden looked much prettier; even her dimples showed. Emily appeared sad but at the same time appealing.
TEST RESULTS AND INTERPRETATION:
Emily’s measured IQ places her within a high range of cognitive functioning. She passed all tests on a five-year level and proceeded to the nine-year level. After she only passed one test at that age level, testing was discontinued as Emily reacted negatively to failure. Emily is quick to respond and shows strength in meaningful memory, language skills, and conceptual thinking.
Emily’s Visual Motor Integration (VMI) score places her at the 5 year 4 months level. This is consistent with her mother’s report that Emily’s large motor development is slow. She is just now learning to pedal a tricycle. She has trouble hopping and balancing. Small motor skills are progressing, though she cannot zip and does not dress “very well.” Emily struggles with pencil dexterity. She is consistently left-handed.
Emily’s freehand drawings are age-appropriate. When asked to draw her family, she began at the right side of the paper by drawing Juliana first, then her mother, her dad, her baby brother, and, with some urging, herself. She placed the baby in her mother’s arms.
It is significant that she drew her mother and father the same size as her sister. She drew herself much smaller, although she is nearly three years older. Undoubtedly, Emily sees herself as a lesser member of the family.
Emily elaborated, drawing a sun, a house, and a tall building. It is almost pathetic, however, that she needed to put a smiling countenance on the house, not only on the people and the sun. Despite the smiles, Emily’s drawing looks sad.
Emily would not take the examiner’s hand to walk to the kitchen, but she accepted a cookie.
It is recommended that Emily be seen in individual therapy at The Children’s Center. She and her mother should also be seen in joint sessions to help develop a healthier relationship.
Although I don’t know it’s called group therapy. All I know is that most of the days when I come to The Chil- dren’s Center it’s just Marsha and me, but today there are other kids here, and a bunch of “big people” I don’t know.
Except Dr. John. I know Dr. John because he talks to my mom. I guess he talks to kids, too, because he’s sitting at a long white table on a little chair like the kids’. I don’t get why we’re all here. I’m with six random kids and no Marsha. I want it to be the other way around. I tell Dr. John, “Usually when I come here there is Marsha and no kids, and today there are kids and no Marsha.” This is the nicest way I can think of to say it.
“It’s important we all talk together, not just kid-to-big-person but kid-to-kid, too.”
He’s wrong. Dr. John is wrong. I don’t need to talk to other kids. I talk to kids all the time. I don’t need The Children’s Center for that.
“Plus we get to paint!” He raises his fist in a cheer, and I perk up. Big people start opening white cabinets and put color into the room a piece at a time.
We put giant smocks—blue plastic ones—over our clothes. They put poster paint on the counter. It is crusty around the edges, and it smells good, old and different and like faraway. The orange jar is almost empty. A pregnant lady a boy calls Pregnant Jill unrolls glossy white paper from a spool jutting out from a wall in the back. How did I not notice this earlier? It’s beautiful, watching Pregnant Jill cutting us each a massive hunk of shiny paper.
If I had a roll of paper like that, I wouldn’t cut it, though. I would leave it in one enormous strip. I’d start at the beginning and draw and write and paint and make one long story, and I would keep going until my story took over the entire house. My words and pictures would never stop.
Now, we sit at the white table, each with a place mat of white paper. Dr. John says: “I want you to paint a picture of the scariest thing that has ever happened to you.”
A kid with a rattail says: “Monsters! No, aliens!” Seriously? I wish I could give Rattail Kid a swift kick under the table, but I’m not sitting close enough. Instead roll my eyes, obvious, so Dr. John can see.
“Monsters are scary,” agrees a lady I don’t know who has a scar on her arm that looks like a flower. “But we aren’t just painting something scary. We’re painting something scary that’s real. Something that’s scary because it happened to us. In real life. Does that make sense to you?” Rattail Kid nods. He does not look like it makes sense to him.
I know right away what I’m going to paint, and not just because I like painting water. I reach for the blue paint before I’m supposed to, as a guarantee. No one says I can’t or slaps my hand away, so I curl my fingers around the jar while Pregnant Jill goes over what we won’t be doing while we paint: painting on ourselves or on other people, spilling the paint on purpose.
I paint the water one blue ribbon at a time, deeper and deeper. My brush makes the up-and-down swoops of the waves. I know the pool at Driftwood Park doesn’t have waves like this, but that night it felt like it did. That night I was swimming with my family, but when I couldn’t stand it anymore, when my brain was hurting too hard, I left them. I went deeper and deeper.
I couldn’t touch. The water lapped over the crown of my head. I opened my eyes, but that made them sting, so I squeezed them shut again and held my breath. There was no sound. A moment earlier, there had been: hair metal band blasting from the red pickup in the visitor lot, people on their balcony yelling at each other, a TV turned too loud to a M*A*S*H rerun. Now nothing. Finally nothing. I didn’t breathe. At first it scared me. Then it felt good not to breathe.
I add myself under the deepest ribbon. I am no more than a speck of brown paint.
Dr. John has us go around and talk about our artwork.
I think everything that has ever happened or ever will happen is the scariest thing for the girl next to me. I can’t tell what she’s painted, and every time the lady with the flower scar tries to get her to say something about it, she rolls up smaller into herself.
I kind of want to punch this girl. Dr. John sees my left hand clench and shoots me a glance like Forget it. Out loud, all he says is: “Your turn, Emily.”
“This is the night I drowned,” I announce, all eyes on me. “I was under the water. Couldn’t touch the bottom. Couldn’t touch the top. But then my dad came and pulled me out.”
“I drowned once, too!” the scared girl exclaims, unrolling. “I drowned, and it was so scary! I got rescued!”
Nods all around, from kids who drowned but were saved.
“It feels like drowning,” says Dr. John. “But none of you actually drowned. When you drown, you go under- water, but you don’t come back up.”
He’s wrong. Dr. John is wrong. I’m not like the other kids, the ones who think they’ve drowned but haven’t. I have. The drowning’s not what’s below the water—it’s what’s above it.