Out of My Mind (2 page)

Even though he sometimes made up his own vocabulary, Dad never spoke baby talk to me like my mother did. He always spoke to me as if he were talking to a grown-up, using real words and assuming I would understand him. He was right.

“Your life is not going to be easy, little Melody,” he’d say quietly. “If I could switch places with you, I’d do it in a heartbeat. You know that, don’t you?”

I just blinked, but I got what he meant. Sometimes his face would be wet with tears. He’d take me outside
at night and whisper in my ear about the stars and the moon and the night wind.

“The stars up there are putting on a show just for you, kid,” he’d say. “Look at that amazing display of sparkle! And feel that wind? It’s trying to tickle your toes.”

And during the day he would sometimes take off all the blankets that my mother insisted I be wrapped in and let me feel the warmth of the sun on my face and legs.

He had placed a bird feeder on our porch, and we would sit there together as the birds darted in, picking up seeds one at a time.

“That red one is a cardinal,” he’d tell me, and “that one over there is a blue jay. They don’t like each other much.” And he’d chuckle.

What Dad did most was to sing to me. He has a clear voice that seems made for songs like “Yesterday” and “I Want to Hold Your Hand.” Dad loves the Beatles. No, there’s no figuring out parents and why they like stuff.

I’ve always had very good hearing. I remember listening to the sound of my father’s car as he drove up our street, pulled into the driveway, and rustled in his pocket to find his house keys. He’d toss them on the bottom step, then I’d hear the sound of the refrigerator
door open—twice. The first time he’d get something cold to drink. The second time he’d search for a huge hunk of Muenster cheese. Dad loves cheese. It doesn’t agree with his digestive system very well, though. Dad also has the loudest, stinkiest farts in creation. I don’t know how he manages to control them at work, or even if he does, but when he’d get home, he’d let them loose. They’d start as he walked up the stairs.

Step, fart.

Step, fart.

Step, fart.

I’d be laughing by the time he got to my room, and he’d lean over my bed and kiss me. His breath always smelled like peppermints.

When he could, Dad read to me. Even though I know he had to be tired, he’d smile, pick out a book or two, and I’d get to go to
Where the Wild Things Are
, or to where
The Cat in the Hat
was making a mess.

I probably knew the words by heart before he did.
Goodnight, Moon. Make Way for Ducklings.
Dozens more. The words to every single book my father ever read to me are forever tucked inside.

Here’s the thing: I’m ridiculously smart, and I’m pretty sure I have a photographic memory. It’s like I have a camera in my head, and if I see or hear something, I click it, and it stays.

I saw a special on PBS once on children who were geniuses. These kids could remember complicated strands of numbers and recall words and pictures in correct sequence and quote long passages of poetry. So can I.

I remember the toll-free number from every infomercial, and the mailing addresses and websites, too. If I ever need a new set of knives or the perfect exercise machine, I’ve got that information on file.

I know the names of the actors and actresses of all the shows, what time each program comes on, which channel, and which shows are repeats. I even remember the dialogue from each show and the commercials in between.

Sometimes I wish I had a delete button in my head.

I have a television remote control clicker attached to my wheelchair, very close to my right hand. On the left side I have a remote for the radio. I have enough control in my fist and thumbs to push the buttons so I can change the station, and I’m
really
glad of that! Twenty-four hours of big-time wrestling or the home shopping station can drive a person nuts! I can adjust the volume and even play DVDs if someone has popped one in the player for me. Lots of times I watch Dad’s old videos of me.

But I also like the cable channels that talk about stuff
like kings and the kingdoms they conquered or doctors and the diseases they cured. I’ve seen specials on volcanoes, shark attacks, dogs born with two heads, and the mummies of Egypt. I remember them all. Word for word.

Not that it does me a lot of good. Nobody knows it’s there but me. Not even my mother, although she has this “Mom sense” that knows I understand stuff. But even that has its limits.

Nobody gets it. Nobody. Drives me crazy.

So every once in a while I
really
lose control. I mean really. My arms and legs get all tight and lash out like tree limbs in a storm. Even my face draws up. I sometimes can’t breathe real well when this happens, but I have to because I need to screech and scream and jerk. They’re not seizures. Those are medical and make you go to sleep.

These things—I call them my “tornado explosions”— are pieces of me. All the stuff that does not work gets balled up and hyped up. I can’t stop, even though I want to, even though I know I’m freaking people out. I lose myself. It can get kinda ugly.

Once, when I was about four, Mom and I were in one of those superstores that sells everything from milk to sofas. I was still small enough to fit in the child seat in the front of the cart. Mom always came prepared
and stuffed pillows on each side of me so I wouldn’t tilt. Everything was fine. She tossed toilet paper and mouthwash and detergent into the cart, and I looked around, enjoying the ride.

Then, in the toy section, I saw them. Brightly colored packages of plastic blocks. Just that morning I had seen a warning on television about that toy—they were being recalled because the blocks had been painted with lead paint. Several children had already been hospitalized with lead poisoning, the report had said. But there they were—still on the shelf.

I pointed to them.

Mom said, “No, sweetie. You don’t need those. You have enough toys.”

I pointed again and screeched. I kicked my feet.

“No!” Mom said more forcefully. “You are not going to have a tantrum on me!”

I didn’t want the blocks. I wanted to tell her they were dangerous. I wanted her to tell somebody to get rid of them before a child got sick. But all I could do was scream and point and kick. So I did. I got louder.

Mom rushed out of the toy section, pushing the cart real fast. “Stop it!” she cried out at me.

I couldn’t. It made me so angry that I couldn’t tell her. The tornado took over. My arms became fighting sticks, my legs became weapons. I kicked at her with
my feet. I screamed. I kept pointing in the direction of those blocks.

People stared. Some pointed. Others looked away.

Mom got to the door of the store, yanked me out of the cart, and left it with all her selections sitting there. She was almost in tears when she got to the car. As she buckled me in my seat, she almost screamed at me, “What is
wrong
with you?”

Well, she knew the answer to that one, but she knew that was not my usual behavior. I gulped, sniffed, and finally calmed down. I hoped the people at the store watched the news.

When we got home, she called the doctor and told him about my crazy behavior. He sent a prescription for a sedative, but Mom didn’t give it to me. The crisis was over by then.

I don’t think Mom ever figured out what I was trying to say that day.

Doctors. Where do I start? Doctors
really
don’t get me. Mom’s a nurse, so I guess she speaks their language, but they sure don’t know how to talk to me.

I’ve seen dozens of doctors in my life, who all try to analyze me and figure me out. None of them can fix me, so I usually ignore them and act like the retarded person they think I am. I paste on a blank look, focus on one wall, and pretend their questions are too hard for me to understand. It’s sort of what they expect anyway.

When I turned five, it was time to think about enrolling me in school. So my mother took me to a
doctor whose job it was to figure out how smart I was. She wheeled me in, locked the brake so my wheelchair would not roll, and made sure the lap strap was fastened. When my seat belt comes undone—and it does every once in a while—I slide out of that wheelchair like a piece of wet spaghetti.

The specialist was a very large man. The bottom button of his shirt had come undone, and his stomach poked through above his belt. Gross!

“My name is Dr. Hugely,” he said in a booming voice.

For real. I couldn’t make this stuff up.

“We’re going to play a game today, okay? I’ll ask you some questions, and you get to play with the toys here. Won’t that be fun?”

I knew it would be a long, long hour.

He brought out a stack of well-used, hopefully not lead-tainted, wood blocks, then leaned in so close to me, I could see the pores in his face. Gross! “Can you stack these in order according to size?” he said loudly and slowly, as if I were hard of hearing and really stupid.

But who was being stupid? Didn’t he know I couldn’t grab the blocks? Of course I knew which block was bigger than the other. But I couldn’t stack them if he paid me money! So I just took my arm and swept them all to the floor. They fell with a wooden clatter. I tried
not to laugh as he picked them up. He breathed really hard as he reached for them.

Next, he held up glossy eight-by-ten cards with different colors painted on each one. “Tell me when you see the color blue, Melody,” he said in that voice that told me he thought this was all a waste of time.

When the blue card showed up, I pointed to it and made a noise. “Buh!” I said.

“Marvelous! Tremendous! Stupendous!” he shouted. He praised me like I had just passed the test to get into college. If I could have rolled my eyes, I would have.

Then he showed me green, so I kicked and made a noise, but my mouth can’t make the
G
sound. The doctor looked disappointed.

He scribbled something on his clipboard, pulled out another stack of cards, then said, loudly, “I’m going to ask you some questions now, Melody. These might be hard, but do your best, okay?”

I just looked at him and waited while he placed the first set of cards in front of me.

“Number one. Which one of these is not like the others?”

Did he get this stuff from
Sesame Street
?

He showed me pictures of a tomato, a cherry, a round red balloon, and a banana. I know he was probably looking for the balloon as the answer, but that just seemed
too easy. So I pointed to the banana because the first three were round and red, and the banana was not.

Dr. Hugely sighed and scribbled more notes. “Number two,” he said. He showed me four more cards. This time there were pictures of a cow, a whale, a camel, and an elephant. “Which animal gives birth to a calf?”

Now, I watch Animal Planet all the time. I know for a fact that
all
the animals he had pictured there had babies called a “calf.” I thought doctors were supposed to be smart. What to do? I hit each picture slowly and carefully, then did it once more just to make sure he understood. I don’t think he did.

I heard him mumble “cow” as he wrote more notes. It was clear he was giving up on me.

I noticed a copy of
Goodnight, Moon
on his bookshelf. I think it was written in Spanish. It was called
Buenas Noches, Luna
. That would have been fun to look at, but I had no way of telling him I’d like to see the book.

After watching
Sesame Street
and
Dora the Explorer
a million times, and sitting for hours watching the Spanish channels, I could understand quite a bit of Spanish if it was spoken slowly enough—and at least enough words to read the title of that book. He never thought to ask me about that, of course.

I knew the words and melodies of hundreds of songs—a symphony exploding inside my head with no
one to hear it but me. But he never asked me about music.

I knew all the colors and shapes and animals that children my age were supposed to know, plus lots more. In my head I could count to one thousand—forward and backward. I could identify hundreds of words on sight. But all that was stuck inside.

Dr. Hugely, even though he had been to college for like, a million years, would never be smart enough to see inside of me. So I put on my handicapped face and took my mind back to last summer when Mom and I went to the zoo. I really liked the elephants, but talk about stink! Actually, Dr. Hugely sort of reminded me of one of them. My mom and the doctor had no idea why I was smiling as we rolled into the waiting room while he wrote up his evaluation of me. It didn’t take long.

I’m always amazed at how adults assume I can’t hear. They talk about me as if I’m invisible, figuring I’m too retarded to understand their conversation. I learn quite a bit this way. But this conversation was really awful. He didn’t even try to soften the news for my mom, who, I’m sure, felt like she got hit by a truck.

He began by clearing his throat. “Mrs. Brooks,” he then said, “it is my opinion that Melody is severely brain-damaged and profoundly retarded.”

Whoa! Even though I was only five, I had watched
enough Easter Seals telethons to know this was bad. Really bad. I felt a thud in my gut.

My mom gasped, then said nothing for a full minute. Finally, she took a deep breath and protested quietly, “But I know she’s bright. I can see it in her eyes.”

“You love her. It’s only normal to have wishful thinking,” Dr. Hugely told her gently.

“No, she has a spark. More than that—a flame of real intelligence. I just know it,” my mother insisted, sounding a little stronger.

“It takes time to accept the limitations of a beloved child. She has cerebral palsy, Mrs. Brooks.”

“I know the
name
of her condition, Doctor,” my mother said with ice in her voice. “But a person is so much more than the name of a diagnosis on a chart!”

Good try, Mom,
I was thinking. But already her voice was losing its edge, melting into the mushiness of helplessness.