The Color of Silence Read online

  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?

  Chapter 20

  A speech therapist named Shawna is coming to see me today. I’m surprised—I didn’t even know that the hospital had speech therapists.

  I haven’t seen a speech therapist since I was in Ms. Blaine’s class. Her name was Jade, which I thought was such a lovely name. She used to wear a green pendant, and she told me the stone in it was also called jade. Imagine being named after a beautiful green stone!

  Jade tried to teach my body to express what was in my head. She showed me pages of pictures and symbols and asked me to point to certain ones. But my body refused to cooperate. When I tried to point, my fingers would brush over the wrong images or miss the board completely. Pushing buttons or pointing at cards didn’t work either. My hands and arms either stand at attention, stubbornly refusing to bend to my will, or they start to move in every direction except the one I have chosen. For a while we even tried using my eyelids as my voice. Jade told me to blink once for yes and twice for no. It sounded simple, but sometimes my eyes blink without my permission, and no becomes yes and yes becomes no, and then no one understands me at all.

  I thought everyone had given up on my body ever finding a way to communicate.

  I’m glad Shawna is coming today instead of yesterday. My walk with Alexandra tired me out. And I make a better first impression when I’m not tired.

  “Hello there. I’m Shawna. I think Kathleen told you I was coming.” She materializes beside me before I realize she’s here. Nurse shoes, I guess.

  “So, I’m one of the hospital speech paths, as I guess you know. I don’t spend a lot of time on this ward, but I do a lot of outpatient work here. Patrick McDonald came to see me last week and told me all about you. After talking to him, I thought we should meet.”

  Figures! It would have to be Patrick who told her about me. Shawna watches me really closely when she talks, looking deeply into my eyes. I can tell she already knows that’s where my answers hide.

  “I’ve heard that you’ve been spending time with a new volunteer. Do you enjoy your time with her?’ I try to push my eyes open wide and smile at her in a way that she will understand. It’s our first meeting, so I’m not sure she will recognize that my expression is a smile. I can’t really tell what my face is doing when I tell it to raise the corners of my mouth. It’s a lot of effort to give what seems like an obvious answer, but

  I do it anyway.

  “I would call that a yes. Do you have any other volunteers who spend time with you right now?” Harder one to answer. No is harder than yes. I try to shrink my eyes back down and move my mouth out of smile mode.

  “OK. I’m not sure if that’s a no, but I can double-check. Anyway, I know that you have tried some different communication techniques in the past, but nothing has really worked out for you consistently. I guess you haven’t worked with a speech path for quite a whi
le?”

  I don’t actually know the answer this time. What does she mean by quite a while? There are so many different ways of describing time that it’s not always easy to tell what someone means. “I’ll be back soon” can mean five minutes or five days or even longer. “See you later” is the same as “I’ll be back soon.” When I first came to the hospital, Brenda told me it would be for just a “while.” I’ve been here a long time. “While” seems to be another one of those multi-meaning words that can end up meaning nothing at all.

  I am in my chair, so I can see her clearly. She doesn’t seem perturbed by my non-answer.

  “I was wondering how you would feel about spending some time with me, starting over again with the communication issue, at least for the rest of your time here. Would you be willing to spend some time with me to try something new?” She looks at me, and I can see in her eyes that she believes that

  I can understand her. I try another smile and hope she recognizes it for what it is trying to be. I am relieved to see her smile back.

  “OK. Good. There’s a communication technology, a kind of computer, that’s been helping people who have challenges similar to yours. It uses your eye movements to help you to speak. I thought it might work for you.”

  I look at her. I can’t believe what I’m hearing. There’s a machine that could help me talk with my eyes? That’s the one part of me that I’ve always been able to control. For the most part anyway. I can make my eyeballs move in their sockets and focus them on what I want to see, so long as my head’s in the right place. No one has ever thought that would help me to talk before!

  “I’ve already spoken with Allison, and she’s on board.

  I’ll speak with the ward staff about location. I’d really like to have you come down to my office on the main floor when you are able, but I’ll come here if necessary. Actually…maybe we could ask if Alexandra could bring you down. That should

  work! I’ll schedule you in for Friday afternoon, and if everything’s OK with you, we’ll get started!” She sounds excited by her own idea, and she kind of springs up to her feet. She has an energy that buzzes around her, making the air vibrate.