Out of My Mind
Authors: Sharon M. Draper
ACKNOWLEDGMENTS
With deep appreciation, I’d like to thank all the wonderful individuals who dedicate their lives to children with special needs.
I’d like to offer my special thanks and gratitude to the patient and devoted caregivers at Echoing Lake Facilities, The Renouard Home, The Lucy Idol Center, Camp Cheerful, Stepping Stones, Camp Allyn, Bobbie Fairfax School, and Roselawn Condon School (extra thanks to Daphne Robinson).
Thank you to my friend Karen Brantley, who
really
understands it all!
And special thanks to my editor Caitlyn Dlouhy for her amazing skill, vision, and that green editing pen!
To my daughter,
Wendy Michelle Draper,
Words.
I’m surrounded by thousands of words. Maybe millions.
Cathedral. Mayonnaise. Pomegranate.
Mississippi. Neapolitan. Hippopotamus.
Silky. Terrifying. Iridescent.
Tickle. Sneeze. Wish. Worry.
Words have always swirled around me like snowflakes—each one delicate and different, each one melting untouched in my hands.
Deep within me, words pile up in huge drifts.
Mountains of phrases and sentences and connected ideas. Clever expressions. Jokes. Love songs.
From the time I was really little—maybe just a few months old—words were like sweet, liquid gifts, and I drank them like lemonade. I could almost taste them. They made my jumbled thoughts and feelings have substance. My parents have always blanketed me with conversation. They chattered and babbled. They verbalized and vocalized. My father sang to me. My mother whispered her strength into my ear.
Every word my parents spoke to me or about me I absorbed and kept and remembered. All of them.
I have no idea how I untangled the complicated process of words and thought, but it happened quickly and naturally. By the time I was two, all my memories had words, and all my words had meanings.
But only in my head.
I have never spoken one single word. I am almost eleven years old.
I can’t talk. I can’t walk. I can’t feed myself or take myself to the bathroom. Big bummer.
My arms and hands are pretty stiff, but I can mash the buttons on the TV remote and move my wheelchair with the help of knobs that I can grab on the wheels. I can’t hold a spoon or a pencil without dropping it. And my balance is like zip—Humpty Dumpty had more control than I do.
When people look at me, I guess they see a girl with short, dark, curly hair strapped into a pink wheelchair. By the way, there is nothing cute about a pink wheelchair. Pink doesn’t change a thing.
They’d see a girl with dark brown eyes that are full of curiosity. But one of them is slightly out of whack.
Her head wobbles a little.
Sometimes she drools.
She’s really tiny for a girl who is age ten and three quarters.
Her legs are very thin, probably because they’ve never been used.
Her body tends to move on its own agenda, with feet sometimes kicking out unexpectedly and arms occasionally flailing, connecting with whatever is close by—a stack of CDs, a bowl of soup, a vase of roses.
Not a whole lot of control there.
After folks got finished making a list of my problems, they might take time to notice that I have a fairly nice smile and deep dimples—I think my dimples are cool.
I wear tiny gold earrings.
Sometimes people never even ask my name, like it’s not important or something. It is. My name is Melody.
I can remember way back to when I was really, really young. Of course, it’s hard to separate real memories from the videos of me that Dad took on his camcorder. I’ve watched those things a million times.
Mom bringing me home from the hospital—her
face showing smiles, but her eyes squinted with worry.
Melody tucked into a tiny baby bathtub. My arms and legs looked so skinny. I didn’t splash or kick.
Melody propped with blankets on the living room sofa—a look of contentment on my face. I never cried much when I was a baby; Mom swears it’s true.
Mom massaging me with lotion after a bath—I can still smell the lavender—then wrapping me in a fluffy towel with a little hood built into one corner.
Dad took videos of me getting fed, getting changed, and even me sleeping. As I got older, I guess he was waiting for me to turn over, and sit up, and walk. I never did.
But I did absorb everything. I began to recognize noises and smells and tastes. The
whump
and
whoosh
of the furnace coming alive each morning. The tangy odor of heated dust as the house warmed up. The feel of a sneeze in the back of my throat.
And music. Songs floated through me and stayed. Lullabies, mixed with the soft smells of bedtime, slept with me. Harmonies made me smile. It’s like I’ve always had a painted musical sound track playing background to my life. I can almost hear colors and smell images when music is played.
Mom loves classical. Big, booming Beethoven symphonies blast from her CD player all day long. Those
pieces always seem to be bright blue as I listen, and they smell like fresh paint.
Dad is partial to jazz, and every chance he gets, he winks at me, takes out Mom’s Mozart disc, then pops in a CD of Miles Davis or Woody Herman. Jazz to me sounds brown and tan, and it smells like wet dirt. Jazz music drives Mom crazy, which is probably why Dad puts it on.
“Jazz makes me itch,” she says with a frown as Dad’s music explodes into the kitchen.
Dad goes to her, gently scratches her arms and back, then engulfs her in a hug. She stops frowning. But she changes it back to classical again as soon as Dad leaves the room.
For some reason, I’ve always loved country music— loud, guitar-strumming, broken-heart music. Country is lemons—not sour, but sugar sweet and tangy. Lemon cake icing, cool, fresh lemonade! Lemon, lemon, lemon! Love it.
When I was really little, I remember sitting in our kitchen, being fed breakfast by Mom, and a song came on the radio that made me screech with joy.
So I’m singin’
Elvira, Elvira
My heart’s on fire, Elvira
Giddy up oom poppa oom poppa mow mow
Giddy up oom poppa oom poppa mow mow
Heigh-ho Silver, away
How did I already know the words and the rhythms to that song? I have no idea. It must have seeped into my memory somehow—maybe from a radio or TV program. Anyway, I almost fell out of my chair. I scrunched up my face and jerked and twitched as I tried to point to the radio. I wanted to hear the song again. But Mom just looked at me like I was nuts.
How could she understand that I loved the song “Elvira” by the Oak Ridge Boys when I barely understood it myself? I had no way to explain how I could smell freshly sliced lemons and see citrus-toned musical notes in my mind as it played.
If I had a paintbrush . . . wow! What a painting that would be!
But Mom just shook her head and kept on spooning applesauce into my mouth. There’s so much my mother doesn’t know.
I suppose it’s a good thing to be unable to forget anything—being able to keep every instant of my life crammed inside my head. But it’s also very frustrating. I can’t share any of it, and none of it ever goes away.
I remember stupid stuff, like the feel of a lump of
oatmeal stuck on the roof of my mouth or the taste of toothpaste not rinsed off my teeth.
The smell of early-morning coffee is a permanent memory, mixed up with the smell of bacon and the background yakking of the morning news people.
Mostly, though, I remember words. Very early I figured out there were millions of words in the world. Everyone around me was able to bring them out with no effort.
The salespeople on television:
Buy one and get two free! For a limited time only.
The mailman who came to the door:
Mornin’, Mrs. Brooks. How’s the baby?
The choir at church:
Hallelujah, hallelujah, amen.
The checkout clerk at the grocery store:
Thanks for shopping with us today.
Everybody uses words to express themselves. Except me. And I bet most people don’t realize the real power of words. But I do.
Thoughts need words. Words need a voice.
I love the smell of my mother’s hair after she washes it.
I love the feel of the scratchy stubble on my father’s face before he shaves.
But I’ve never been able to tell them.
I guess I figured out I was different a little at a time. Since I never had trouble thinking or remembering, it actually sort of surprised me that I couldn’t do stuff. And it made me angry.
My father brought home a small stuffed cat for me when I was really little—less than a year old, I’m sure. It was white and soft and just the right size for chubby baby fingers to pick up. I was sitting in one of those baby carriers on the floor—strapped in and safe as I checked out my world of green shag carpet and matching sofa. Mom placed the toy cat in my hands, and I smiled.
“Here, Melody. Daddy brought you a play-pretty,” she cooed in that high-pitched voice that adults use with children.
Now, what’s a “play-pretty”? As if it’s not hard enough figuring out real stuff, I have to figure out the meanings of made-up words!
But I loved the soft coolness of the little cat’s fur. Then it fell on the floor. Dad placed it in my hands the second time. I really wanted to hold it and hug it. But it fell on the floor once more. I remember I got mad and started to cry.
“Try again, sweetie,” Dad said, sadness decorating the edges of his words. “You can do it.” My parents placed the cat in my hands again and again. But every single time my little fingers could not hold it, and it tumbled back down to the carpet.
I did my own share of tumbling onto that rug. I guess that’s why I remember it so well. It was green and ugly when you looked at it up close. I think shag carpeting was outdated even before I was born. I had lots of chances to figure out how the threads of a rug are woven as I lay there waiting for someone to pick me up. I couldn’t roll over, so it was just an irritated me, the shag rug, and the smell of spilled sour soy milk in my face until I got rescued.
My parents would prop me up on the floor with
pillows on either side of me when I wasn’t in the baby seat. But I’d see a sunbeam coming through the window, turn my head to watch the little dust things that floated in it, and
bam
, I’d be face-first on the floor. I’d shriek, one of them would pick me up, quiet me, and try to balance me better within the cushions. Still I’d fall again in a few minutes.
But then Dad would do something funny, like try to jump like the frog we were watching on
Sesame Street
, and it would make me giggle. And I’d fall over again. I didn’t
want
to fall or even mean to. I couldn’t help it. I had no balance at all. None.
I didn’t understand at the time, but my father did. He would sigh and pull me up onto his lap. He’d hug me close and hold up the little cat, or whatever toy I seemed to be interested in, so I could touch it.