I

am bound in a prison of flesh and bone. My arms and legs are bent, frozen, and I am splayed on the bed like a doll tossed in a corner. My backbone presses into the firm mattress, and I feel the burning and oozing from a bedsore. All I want to do is roll over; all I can do is lie still.

A tear burns a path down my temple to pool in my ear. I wait for Alice; burning, itching, agony stretching the minutes to hours. Finally the door opens, creaking, and the light from the hall bursts into the room, blinding me. I squeeze my eyes closed, the ghosted image of the light searing the inside of my lids. The door closes with a bump and I hear the slap of flip-flops across the linoleum.

"Good morning, Beth. How did you sleep?" Alice cheerily asks as she clicks on the lamp beside my bed. I hear the squeak of the shade as it rocks. I cannot turn to see, but I know the white stars on the blue field are glowing. Alice stands over me, her love for me shining from eyes and wide smile. She's wearing my favorite color, blue. Her long black hair is slicked back into a ponytail that swishes when she walks.

"I slept bad, Alice; my back hurt all night. Can you turn me over, please?"

She turns away. "We've got an exciting day for you today, Beth. What would you like to wear?" I hear a soft grind of wood on wood as she slides a drawer open and swishes fabric around.

"Anything but pink. Please, Alice, just turn me. My back hurts. I have another sore."

"How about pink? You look great in pink." She snaps a pink and white striped short-sleeve blouse in the air. I cringe inside. I hate pink.

"PLEASE TURN ME, ALICE!"

"Okay, let's get you changed." She unbuttons my pajamas and contorts my arms out of the sleeves. My back rubs the bed, and the sore rips open more. A cramp seizes my arm as she twists it into the shirt sleeve. She stretches the shirt until I hear the seam stitches popping.

"Ow! Ow! Ow! Stop, Alice! That hurts!"

She rolls me over to ease the shirt across my back. I hear a hiss and feel her grip tighten on my arm. "Oh my goodness, Beth! You have a new bedsore! Let me get some medicine for that." She rushes into the bathroom, and I sigh as I feel the pressure ease off my protruding spine. "What is wrong with the night staff?" Alice grumbles as she dabs at the sore, gently, soothingly, smearing a cool salve and pressing a bandage against me. Alice then rolls me to my other side, and fits my other sleeve over my stiff "L" of an arm.

"I know I say this all the time, but I sure wish you could talk. It'd really help to know what you're feeling or need."

I want to hug her, thank her for taking care of me, but my hands are forever fists and my arms will not reach out. For ten years she's been my primary caregiver, ever since I came to the School for the Disabled when I was three. She's bathed me, diapered me, dressed me. I love her, but cannot tell her. I can only hope she sees it in my eyes.

My eyes are the only part of me I can control, and only partially except for a slight twitching of my head. They roll, up, down, my lids sliding over them as if I were beyond exhausted, heavy, not wanting to stay open. When I’m well rested, I can sometimes focus for minutes. Today, they’re mostly closed.

I hear the door slide open, a pop and crunch echoing in my room as the door is locked in place. “Is she about ready, Alice? I need to clean the room before I leave.” I cannot see her, since I’m still on my side, but I know her by her whiny voice: Carol. I don’t like Carol.

“Carol, has Beth been bathed or turned all weekend?”

“I don’t know. I’m sure she has. What does her chart say?” she snarls.

“Did you turn her last night?” I could hear the mother rise up in her voice.

“I don’t remember. I know I was busy with Tanya; she was sick all night. I did more laundry than I have in a long time.”

Alice snorts. "Really?" she bites under her breath. I could almost envision her as a dragon, vile sulfurous smoke pouring from her nostrils.

“Well, you don’t have to get all huffy. We do our best at night; we don’t have the privilege to work one-on-one with the patients like you do.” Carol’s voice raises an octave, the nasal whine more pronounced.

“They’re not ‘patients,’ they’re kids, and they deserve to be treated well,” Alice snaps.

I hear Carol shuffle backwards a step. “Easy, Alice. You act like she even has a clue what’s going on.”

“She does. And right now she has an infected bedsore on her back.”

“Oops. I guess I missed that.”

“Yeah, I guess so.” Alice lifts me and places me in my chair. I'm reclining like a sultan, my arms splayed open past the sides of my stroller. Alice pulls my arms together and slides my cuffs over my wrists. The foam is in the shape of a figure eight and is soft and smooth on my skin, even with my arms pulling against the sides.

“She looks like a convict with those cuffs,” Carol laughs. I hate Carol.

I could hear Alice grind her teeth. “Just get her bed changed before you leave, please.” She pushes my stroller out the door. I hear Carol humph as we pass by. Alice grumbles under her breath as she strides down the hall, the flip-flops flapping a swish snap, swish snap. She reaches her slender fingers, wrinkled a bit from age and hand-washing, and brushes the hair from my forehead. “I’m sorry you had a miserable weekend. I will report her and see if we can make it better.”

We walk, the whirring of my wheels and the rhythm of the flip-flops soothing me into a semi-doze.

"We have something so exciting for you, today, Beth. Something you've needed for a long time." Her voice is sing-songy with excitement. My heart starts beating faster, and I grin widely. She can only see the twinkle in my rolling eyes since my lips don't move.

She pushes me through the halls. I watch the ceiling tiles pulse past me: one, two, three, four...a turn, more tiles. The purple wall color tells me we are in the technology wing of the school.

"Hello, Beth! You are looking lovely today!"

"Hello, Marianne." Oh, how I wish I could talk. Her slim, somewhat masculine face appears before me, brown and lined. She’s cut her hair again; it is chiseled against her skull now. I like the feathery wings she used to have better.

"We are trying out some new technology, Beth." Marianne's voice is muffled as she bends over behind me. I feel my stroller shimmy and shift as she drapes a heavy…something…on the back. Velcro rips and I feel first one side of the stroller then the other shift as she secures the bottom. "Okay. Beth, we are going to put this earpiece into your ear,” a thin worm-like white plastic with a bulbous head twists as she rocks her fingers. I see it coming closer, closer, until it disappears beside me and I feel Marianne wiggle it into my ear. She brushes the curved piece over the top of my ear, and lays the wire along my neck. It tickles.

“The earpiece is connected to the computer hanging on your stroller. We have programmed it with different subjects, just a few to start, and phrases that go with those subjects.”

“How's this going to work?” Alice sounds like the little girls on my wing at Christmas time when the caregivers brought presents.

“She’ll hit the button to start the program then listen through the list until she hears the topic she needs. For example, let’s say she’s hungry. She’ll hit the button and listen until she gets to ‘basic needs.’ Then she’ll hit the button again, and hear things like, ‘I am thirsty,’ and ‘I am hot.’ Once she hears ‘I am hungry,’ she’ll hit the button twice to select. The computer will ‘speak’ for her. Of course, we are just testing it, so it may not work well, but if it does, she can use it immediately.”

Tears pool in my eyes. “Hurry! Get it ready! I want to try!”

I see from the corner of my eye a black pad, slightly puffed, as Marianne wiggles it next to my ear. I twitch just a bit and feel the squish of the pad and hear the click of the button. My stroller vibrates as the computer wakes. I hear a tinny female voice: “hygiene,” (breath), “basic needs,” (breath), “feelings.” I scroll through the list of different items, thrilling at the many things I will be able to say.

“I don’t think it’s working,” Alice states.

“It is, Alice. It is. I’m just listening!” My head bumps. I’m glad I can at least move that much. I’m looking for what I’ve wanted to say for years. Bump, listen, bump, listen, bump bump. My tears seep out of my eyes as I hear my new voice fill the room, “I love you.”

Alice gasps and chokes. “I love you, too, Beth!” She squeezes me and I feel a cold tear hit me on the nose. “Sorry!” she says as she wipes it away with her fingertips. I love Alice’s caresses. They are what I imagine my mother’s would be if she were around.

“Well, I guess it’s working! We’ll add phrases as she gets used to it.” She leans down and looks into my rolling eyes. “Congratulations, Beth!”
Bump, bump, bump bump. “Thank you.”

“You’re welcome.” She ruffles my hair. We leave the room, my greatest treasure attached securely to my stroller.

Alice pushes me down the hall. “I’m hungry. The light is bright. I’m happy. I want to go outside.” Alice laughs at me, but I don’t care. I can’t stop talking.

I hear Carol chatting with someone as we go by. I bump through my list, and say, “Goodbye.” Alice laughs as we hear the scuff of their feet behind us as they jump in surprise.

After thirteen long years trapped in a doll’s voiceless body, I am now free. Though I still cannot move, I can communicate. I now have a voice.

Impressum

Texte: (c) 2011 Stacey Doss All rights reserved.
Tag der Veröffentlichung: 09.08.2011

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Dedicated to all those who strive to make lives easier for children with profound developmental disabilities.