The Color of Silence (10 page)

Chapter 18

“Shhh. Everyone be quiet and listen. What can you hear?”

I strain my ears. I hear a faint sound that seems very far away.

“A bird?” Debbie asks.

“I think it's a loon calling to us from the river. It's still light enough to go and see if we can find it. Does that sound good?”

“Sounds really good. I saw a loon once before, I think, but I don't remember if it was for real or in a movie or something. I don't know if Joanie ever saw a loon, though, so she will like it for sure.”

Debbie likes to talk for me. She's not always right, but she always tries.

“OK, Deb. But remember you have to be quiet so we don't scare it away.” Brenda winks at me, and I smile at her.

We head down the sidewalk, a small parade of wheelchairs and workers. There are a couple of high school students who come sometimes in the evening to help out with things like walks or activity time. One of them is pushing Debbie and trying to keep her quiet. I'm with Brenda. We're both very quiet.

“Hi.”

The voice startles me, and I come out of the memory before I can even get down the sidewalk. But I don't mind. Right in this moment, I'm happy to be here in today. My lungs decided to stop misbehaving last night so I'm having a super good breathing day today. Patrick told me that Alexandra is coming and that I might even be going outside for real.

I had been listening for her shoes, but maybe I was thinking about going outside so much that my rainbow decided to take me there. I hope that's why I didn't hear her coming. I would hate to think that she found a pair of nurse shoes to wear. I love her loud shoes.

She walks over to me, and I'm relieved to hear the lovely clicking sound. It's a little different than before, and I guess that she is wearing another pair of drum shoes today. I wish I could ask her to hold her foot up where I can see so that I can take a look. I bet they're pretty.

I like pretty shoes. I don't know why because I don't really need to have any. They put shoes on me to keep my feet warm when I go outside sometimes, but mostly I wear little knitted slippers or heavy socks.

I know that I don't really need shoes, and I'm sure it would be difficult to force shoes onto my twisted feet that pull away from anyone trying to dress them up—but I still would like to think of them down there looking like something other girls might wear.

“So, Joanie, are you ready? Alexandra, I'll be doing the actual lifting. All I'll be having you do is to help guide her into the chair.”

I'm glad that it is Patrick who is doing the teaching. Kathleen and the others are all very good at it as well, but Patrick will make Alexandra learn without making her more nervous than she likely is already.

Alexandra doesn't answer him with her voice. I imagine that she just nods, because Patrick doesn't repeat himself.

Patrick takes Alexandra step by step through the transfer process. I wonder if she is worried by the number of steps. There are lots. Nothing on me supports itself, so the people moving me have to make sure that every piece of me gets safely from one place to another. They have to be sure that my head doesn't fall back or forward before the chair catches it and holds it steady, the way my neck can't. My hands and arms often become stiff and unfriendly when they're touched, and sometimes they move themselves around, trying to get away from the hands that are trying to help, and sometimes they get tangled up in sheets or blankets or even people's hair or sweaters. My legs are even more difficult to persuade, tightening up to the point of trying to cross over each other, until they are separated by my chair. Once they're freed of the chair when it's time for me to go back to bed, they start their war again and need gentle persuasion…and sometimes a pillow in between to keep them from fighting each other.

“Sorry,” Alexandra says very quietly to me, as she tries to follow Patrick's directions and thinks she is doing it wrong. She speaks so quietly that I don't think Patrick hears her at all. She says nothing to him—just follows his directions carefully, looking up at him with question marks in her eyes. He seems to read her face much as he does mine and just keeps talking to her as if they are having a conversation.

“You're doing fine. Just hold her arm gently until I get the strap on. There. You'll get the hang of it with time and practice. Remember, all you have to do is help. There'll always be a nurse to do most of the work. OK, kid, you're in.” He looks at her and then at me. They're standing on opposite sides of the chair, with me in the middle of the sandwich.

I wonder what a sandwich is like. How would it feel to open your teeth wide and bite down on bread and cheese until you have a chunk of it in your mouth, to chew it up and swallow it down before taking another bite?

“All right. You're all ready to go. Just stay on the hospital grounds, and make sure to check in when you come back. See ya, beautiful.” He touches my head very gently and briefly and leaves the room. Alexandra hesitates for a moment. She tries to push me forward but the brakes are still on, and we both stay where we are. It's kind of funny, but I try not to laugh. I don't want to distract her.

She figures it out after a second or two, and we head out onto the ward. Everyone smiles at us and tells us to have
a good time. Alexandra doesn't say anything. I wonder if she smiles back.

It's so beautiful outside today. Winter is barely over, but it feels like summer decided to surprise us by pushing ahead of spring. The sun has pushed all of the clouds away, and
I can feel it heating up my face like I'm being baked in the oven.
I wonder if this is what a cookie feels like.

The best part is that I am actually outside, all of me, inside and out, not just remembering how it felt in the past. I'm really here, right now, looking at everything I can manage to see.

I'm not sure what Alexandra's eyes are doing. I suspect that she isn't really enjoying herself as much as I am. She's pushing me very slowly along the pathway. I wish I could tell her that I'm not quite as fragile as I appear, and she doesn't have to be afraid.

I especially wish that I could tell her how wonderful it is to get outside and how grateful I am that she is here to take me.
I can smell freshly cut grass. I really love that smell.

The pathway is lined with flowerbeds filled with beautiful new blossoms. I can't remember all of the names of them, but
I recognize tulips, and I think I see some yellow daffodils. I hope that Alexandra is finding the day as beautiful as I am. I think she needs some beauty to sneak inside of her, some light to brighten up her dark places.

She stops walking suddenly and leans over the chair to look at me, putting her hand on my head, which is now completely baked and ready to come out of the oven. It feels wonderful to me. I guess the warmth worries her, though, because she gets a concerned look in her already worried looking eyes, as if she's thinking we should go back. If I could shake my head at her, I would. I try blinking at her to tell her I'm OK, but my eyes just kind of squint. She looks up at the direction of the sun and then down at me. She takes my hat brim and pulls it down a little further to shade my eyes and stands back for another second, looking at me. She nods to herself, and perhaps to me, and we keep on walking.

I can't always see the people we pass, but sometimes
I catch a glimpse. Some people smile with kind eyes and look right at me as if they see that I am really here. Others give me a quick hard stare and then turn their eyes away so they can forget about me faster.

Once in a while someone might even point right at me and say something that I can't hear. Or that I can hear but choose not to listen to. Alexandra seems to have more trouble than
I do, and I am surprised to hear her voice.

“Stupid people.”

Her voice sounds tight and hard with anger. If I could, I'd tell her that she shouldn't waste her precious words worrying about what other people do or think. That it doesn't really matter. That most people are kind, and some are even understanding. And that some people just aren't capable of being either one of those things. Mostly, I'd tell her that she shouldn't care about what those “some” people say. If you don't care, their words can't get inside where they can hurt you.

Alexandra's moment of anger seems to have increased the speed of her feet, and we are moving too fast for me to see much now. It's still nice though. Now I can feel the wind on my face, and it feels rather exciting to be speeding down the sidewalk.

I'm just starting to really enjoy the ride when Alexandra stops suddenly. She steps in front of the chair and checks on me, perhaps worried that the motion has made me sick or unhappy in some way. I smile at her. She doesn't smile back, but her eyes don't look angry, which is good.

I'm glad that she's decided not to be angry anymore.
I understand what anger is and why people feel it, but I have trouble understanding the point to it. It's a dark feeling that holds you down and makes everything bad seem even worse.

From what I can see and imagine, it seems as if anger usually comes when people think they don't have control over some part of their lives. The feeling of being unable to change something no matter how much you want to seems to fill people with storms.

I have no control over any aspect of my outside life.
I should be filled with wind and rain and dark clouds that threaten me every moment of every day. But I'm not. There are clouds in there sometimes, definitely, but mostly I want to be filled with sunlight and rainbows and things that make my life better, not harder.

But maybe it's because I never had the control in the first place, so I was never faced with losing it.

Maybe people's anger comes from the loss.

Alexandra wheels me over to the bench, and we sit in silence for a few moments. Well, not exactly silence.
We
are quiet, but our surroundings are not. There's a play structure across the street, and there are lots of kids who seem to be very excited to play there. The children are definitely loud, shrieking to one another in a way that reminds me of a documentary I watched about monkeys in the jungle. The kids look a little like monkeys, as well, swinging and climbing and picking at one another. There are adults sprinkled around the grounds watching them. When one of the monkeys climbs too high and screams in terror, his mother stands underneath him, trying to persuade him to climb down. Her efforts are not successful, and I feel like laughing as she awkwardly tries to navigate the climber to reach the top to perform a rescue.

We keep watching as the mother tucks the child under her arm and makes her way back down. It would be easier if they really were monkeys, I think. Then the little one could just hop on her back, and they'd both swing down.

The idea actually makes me laugh this time. Alexandra looks at me quickly, her forehead all wrinkled up, her whole face worried instead of just her eyes. The first time people hear me laugh, they often think something else is going on, like a seizure or choking. My laughter comes from somewhere down in my throat, strangled and tight, until it finally shoots out a single burst of sound. People don't always recognize it as a happy noise.
I don't want Alexandra to think something is wrong and decide that we have to back this very second. I like it here with her.

She stares at me for another second or two. I watch her eyes change from concerned to puzzled to something else that I'm not sure about.

And then she starts to smile. The smile reaches all the way up into her eyes.

“Kids!” She says. If I could, I'd nod, but instead I try a smile. I think she recognizes it right away this time and smiles at me again with her whole face.

Just for a second, but it's a very good second!

She turns away from me, and we watch together for another moment or two. Then she stands up in a very determined fashion, and I suspect she has decided that it is time for us to go back after all. I wish we could stay a little longer, because I think that the outside might be helping Alexandra with her insides, but I don't have a choice.

We actually didn't walk very far to get here so we get back too soon. I guess Patrick would be out looking for us if we stayed out much longer, anyway, but it's still kind of disappointing
to be back inside again. As we go through the door of my room, it feels like a blanket has been pulled up over my face, blocking out the light and stifling the air.

Alexandra takes me over to the bed and then stands there as if wondering what to do next.

“That's OK. I'll get her settled. Did you have a nice walk? She looks kind of rosy.” Kathleen has come into the room without us hearing her and placed her hand on my shoulder.
It startles me, and I jump a little. No one notices.

Alexandra looks at me with a worried expression covering her face. She doesn't need to worry. I'm fine. Actually, I'm better than fine. I'm warm and feel…well, rosy is a good word for it. Although the tulips we saw today were lovely and warm looking. Maybe I feel tulipy.

“Oh, don't look so upset! I wasn't criticizing. I was just thinking that it's nice to see some color in her cheeks. Not to worry.” Kathleen puts her hand on my forehead while she says this.

“OK.” The word, or I guess the letters, slips quietly out of her mouth, and Alexandra seems surprised by the sound of her own voice. She looks at me and gives me a little wave good-bye. She starts to head away but then turns back to look at me. She grins at me for a second, and I smile back.

I bet we were both thinking about monkeys.

Chapter 19

I hate walking outside, in public. I avoid it whenever I can. Every time I go out, I feel the waves of disgust flowing over me from every direction, poisoning the air so I can't breathe properly.

When I can't stay in my room and my dad won't drive me, I keep my eyes on the ground and walk as fast as I can so that
I don't have to see anyone and no one will really see me.

But walking down the hospital pathways wasn't as bad as
I expected it to be. It's nothing like going down the sidewalks of the town. The hospital grounds are a bit like an island, surrounded by pavement that separates it from the normal, day-to-day life of the people in our town. Everyone walking the hospital paths is preoccupied with hospital business—patients, families, doctors, nurses—no one is interested in me.

But most people were interested in Joanie. Some looked at her and smiled. Others looked away. And a couple of idiots stared at her like she had something catching.

Joanie didn't really seem to notice, or at least if she did,
it didn't seem to bother her.

It bothered me. How can people be so ignorant?

Maybe it does bother Joanie. Or maybe she's so used to the way people see her that it just slips past her.

I don't really know how she sees the world.

I do think Joanie has a sense of humor, though. I'm pretty sure she was laughing at those kids escaping their parents on the play structure. They looked like a family of chimps or something, crawling all over the place. It did look funny.

Cali would have been laughing for sure. She loved kids.
She always used to say she wanted six, even though it would probably be illegal to have that many children by the time we grow up.

I'm not going to have children. I don't even think I'll
get married.

I wonder if my parents wanted more children than just me. What would it have been like to have a brother or a sister? Would my dad be less over protective if he had more kids to protect? Would I remember my mother better if I had someone to talk to about her besides my father?

My father's memories of my mother are his, and they don't really mean anything to me. He talks about his wife, not my mother.

I don't know what I remember about her. I don't even know if I actually miss her or just miss the idea of having a mother.

I tried going to the graveyard once to see if it would help me feel…connected to her or something, I guess. Cali came with me, even though she's always been opposed to graveyards on ecological grounds.

“Why would I want to take up all that precious space just so my bones can rot in some big wooden box with fancy silk pillows in it? It doesn't make any sense. I want to be cremated and my ashes scattered in the ocean.”

“The ocean? We don't live anywhere near an ocean.”

“The people who love me will make the trip. You'll be too old to do it for me, so I guess my children will have to do it.”

“Don't people like graves so they can go and talk to the person who's gone?”

“I don't know why they need some stone to do that. I don't believe there're any actual dead people under the grave stones.
I think that's a movie idea.”

“Oh.”

She looks at me and then grabs my hand and gives it a squeeze. “Hey, don't listen to me. I'm just babbling. I don't know anything. Come on, let's find your mom.” She keeps hold of my hand, and we walk through the graveyard together until we find my mom's stone.

It's a big stone, with flowers engraved on it. It says, “Beloved wife and mother.”

Beloved. I don't remember loving her, but I know I did. She was my mother.

I feel a little silly at first, but Cali holds fast to my hand and gives me a nod. I shrug my shoulders a bit and take a deep breath.

I tell the gray stone that I loved her. I tell her that I miss her. I tell her that I wish she could have stayed around and watched me grow up. I introduce her to Cali, who doesn't laugh out loud when I do it, but probably wants to.

“Hi. I'm glad to meet you,” she says to the gray stone, even though she doesn't believe my mother is anywhere near it.

She did that for me.

After a while, I ran out of things to say. But before that happened, there was just a moment in there where I felt like I was actually talking to my mom.

It made me feel like I was missing a real version of her, not just an idea of her.

I didn't tell Cali that. She wouldn't have understood.

Maybe she would, now.

I wonder if Joanie has a mother. Or a father for that matter. Did she ever live at home with a mom or a dad? Did she have pink flowers on her bedroom wallpaper because her dad thought girls should have pink flowers in their room? Did her mother tuck her in at night and give her a kiss on the cheek? Did she have pictures on the walls of things that made her happy?

Is she an only child like me?

Where is her family now? Why isn't she with them? Are they dead?

Does she miss
her
mother?