The Color of Silence (15 page)

Chapter 31

Joanie's smiling that crazy smile of hers again. Even though I still feel really tired, it's hard not to smile back. Her skin seems so delicate, thin, like paper that might tear if it's pulled too tightly by the almost constant twisting motion she makes with her mouth. Her whole face looks like it's moving all the time. It should be impossible for her to show any emotions at all. But somehow, she manages to smile and laugh and sometimes even frown. Today she looked so surprised when I opened my mouth for more than thirty seconds that I almost laughed.

None of her expressions look the way they do on other people's faces. It's actually impossible to describe what they
do
look like, or how I even know what they are. Or why I
think
I know what they are.

It's something in her eyes. Everything is in her eyes.

She always looks happy when I walk into the room and kind of disappointed when I get ready to go.

Joanie seems to like me, though I can't imagine why. I've barely said two words to her this whole time.

Then again, maybe that
is
why.

Maybe she's made me up inside her head. Maybe I'm a really nice, super cool person in Joanie's version of the world.

That's a strange thought.

A more likely reason is that I seem to be the only one who actually comes to see her these days.

I think Joanie needs
me
to make this work.

Which is a scary thought.

I don't really like people needing me.

It doesn't seem to work out very well.

But no one else seems to be coming in here to take her to Shawna's and help her with the machine. I guess the ward staff are being trained on it and everything, but they're busy trying to keep everyone else around here breathing. I don't imagine any of them will have too much extra time to spend helping her figure it all out. Although, I'm pretty sure Patrick would do it if he could. I think he even helped Shawna once when I was sick. It's obvious that he's really attached to Joanie, more than any of the other staff are.

But Patrick is always running. He doesn't have time to sit still long enough to help Joanie talk.

I have nowhere to run. I have all the time in the world to sit still and help Joanie talk.

After watching all those videos last night, and sitting here watching Joanie today, I am even more curious about what this will do for her.

How will it feel to finally have a chance to talk to people? To tell them what she wants or doesn't want, or feels or doesn't feel? What will it feel like for all of those people who have been looking after her to finally
actually
talk with her? Will she seem like a different person to them? Her silence hides so much of who she is from everyone around her. I wonder if she'll be excited to come out in the open, or if it feels a little scary.

“Alexandra, did you hear everything I just said?” I nod, even though I'm not sure I heard every word. I did hear most of them…probably…but I'm listening and thinking at the same time—multi tasking, which is not really my best trick, and is probably a bad idea right at this moment.

Shawna is showing me how to work everything she's set up for Joanie so far so that I can do it on my own, on the days she isn't available. I'm glad I spent some time reading and watching last night. Even though nothing I saw there was exactly like what Shawna has set up for Joanie, at least it's close enough that I'm not completely in the dark about the whole thing. Everything she's saying makes sense and doesn't look particularly hard. At least not yet.

“I'll do the actual programming initially. I don't really know how quickly to move and what pages will work best, but we'll feel our way along. OK, let's get it all packed up. I made a bit of a checklist for you. I'm a list person, you know, a type-A personality and all that. Anyway, I'll give you the list, and you do it today with me here, and that should be good enough.”

Shawna definitely likes words. Guess it kind of helps in her job.

Joanie and Shawna both watch me as I get it all packed up. It's not exactly rocket science, but Shawna acts all excited when I get everything in the bag with no leftover pieces. It's nice she's so happy about everything.

One of those positive-energy people.

Like Cali.

Like Joanie.

Who is dancing in her chair right now, because I'm hanging the bag up on the back of her chair so we can take it back to her room with us. She looks like I used to feel on Christmas morning, just before my dad came down and let me open my presents.

“OK, girls. I'll see you next time. I've let the ward staff know that it's OK for Alexandra to set up the machine and work with you whenever you both have time.”

I nod at her and give her a bit of a smile. Joanie gives her a much bigger one, and we head off upstairs with Joanie's words all wrapped up and ready to share with anyone who can take the time to listen.

I saw one of these things that's actually portable on one of the sites I found. It's attached to the chair on a kind of pole thing that can swing into position. I wonder if they can find the money to get her one of those once she's got the hang of it. Maybe I can figure out a way to ask about it.

I'm feeling a little less embarrassed with myself today—knowing I have the guts to open my mouth and really try to help her do this.

I told Joanie that she's the reason I decided to start talking. Which is true.

But she's not the only one I have to talk to.

She's not the only one who
needs
me to talk.

I told her the truth, but I left part of it out. I'm pretty sure Cali would call that a white lie. Cali always told me white lies should be reserved for parents and teachers.

Not friends.

The color of lying.

I guess I should have told Joanie the whole truth.

I'm just not ready to share, yet, that part of who I am with her. I don't really want her to know the selfish, messed-up pieces of me until I've cleaned them up. I'm sure no one has told her who I really am.

Why I'm here.

I'm not so sure she'd be happy to see me anymore if she got to know all of me.

For now, I just want her to see the good parts, the missing pieces of me that splintered off when my life exploded last year.

I just hope I can find them.

Chapter 32

The Wizard sits there staring at me in silence, his words trapped inside a black screen that no one has had the time to turn on for me today. I was so excited to bring him upstairs yesterday with Alexandra, but now I'm feeling a bit sad watching him just sit there, waiting to be woken up

I'm not complaining. At least I'm trying not to. Complaining doesn't really do much good, especially the way I do it inside my head, where no one can hear. But I have to admit, I'm disappointed. I know that there are lots of people on this ward who are desperately ill and that the staff don't always have time for things like helping someone learn words.

Most of the patients on this ward are very elderly, and many of them die while they are here. Three ladies have slept in the bed beside me since I have been here. Roommates, but not like Debbie. None of them ever tried to talk to me.

I know that all three ladies died right there beside me, even though Patrick and Kathleen and everyone else tried to hide it from me. They weren't sure how much I understood, but they still told me polite untruths, like, “She's gone to another part of the hospital.” Or maybe that was true after all. Perhaps there is a room in the hospital where they take the bodies once they don't have the person inside of them anymore.

I believe that I am inside this body but that I exist separately from it. That who I am inside isn't the me that others see on the outside. That even if I do start to have real conversations with people, they still won't fully know me, because I am more than just the outside shell that houses me. I will still be more than my words, even when I actually have some to share.

I haven't had a roommate in a long time. When my lungs started acting up again, they decided it was too dangerous for me to be in a room with other people who could pass on a cold or flu bug. So the bed stays empty. I like it better that way.

I wonder if Debbie lives in a room with an empty bed or if she has a new roommate. I guess she probably does. I don't imagine they could hold my bed for me all this time.

Someone is sleeping in my bed.

Debbie has lived in the group home for a long time, and she told me about at least three other roommates. I wonder if she tells her new roommate about me. What would she say about me, I wonder? Who does she think I am?

I wish she could come to this hospital. It would be nice to see her and hear her chatter again. Which is funny because when I lived with her, I often wished I could use a remote control that would switch her off when I was tired.

Imagine if Alexandra could meet Debbie! She wouldn't have to worry about trying to talk more if Debbie was here. Debbie could have a three-way conversation with herself, and Alexandra and I could both just listen and try not to laugh out loud.

Better yet, imagine if Debbie could meet the Wizard!
I would love to see her face when I actually interrupt her with
my
words for a change!

Maybe by the time I've really learned how to use the Wizard, my lungs will be strong enough for me to go home. Maybe they could find a way for the Wizard to go home with me so I can talk to Debbie and Brenda and anyone else who is living there.

Even if someone else is sleeping in my bed, maybe they could find me another one.

Lots of maybes.

Patrick says that I am strong.

I
might be strong, but my body is not.

I don't really think my lungs are going to let me go home any time soon. If at all.

I don't think that I will ever be elderly. My lungs will someday decide to stop supporting me completely, and this body will be done its time long before I am old and gray.

I dream that one day I will be finished with this life and
I will find somewhere else to go, maybe into another body that will let me walk and talk and dance and sing like Alexandra can. I wonder how that will feel. Will it be a happier life or a more difficult one?

Alexandra certainly doesn't seem very happy much of the time. Debbie seemed happier than she does, even though her body had stopped working the way it used to.

Does Alexandra ever think about dying, I wonder? Do most people our age wonder how long their bodies are going to last, or do they put off thinking about that stuff until they are wrinkled and gray-haired and ready for a bed in a hospital room?

Debbie never talked about dying. I wonder if she ever thought about it.

I do hope my lungs hold out long enough for me to learn enough words to have a conversation while I'm still inside of this body. I want to see how far I can go with Shawna and the Wizard and Alexandra helping me along. I want to have enough words to talk to Alex and ask her if she would like to be my friend.

Are you supposed to ask someone to be your friend, or does it just happen? I am not even completely sure that I know what a friend is supposed to be. I had people in school who
I called my friends, but I don't know if that's just a word I used to label them in my memory. In books I have listened to, friends spend time together doing things they both like to do. Friends help each other with problems and tell each other their secrets.

Debbie used to tell me that we were friends, but I'm not sure how true that was. We shared a room and a home, but did she really have an idea about who I am?

I wonder if Alexandra has a lot of friends. Maybe now that she's found a few words to share, she'll tell me about other kids in her life.

I've never really had the chance to choose who I want to spend time with. No one else has ever really had a chance to choose to spend time with me outside of a classroom or the group home or this hospital.

Not that I can remember anyway.

I haven't gone inside my rainbow for a long time. Maybe I should spend some time in one of my memory stones to see if there might be an old friend waiting in there for me after all. Except that I'm in my chair, and I can't see my stones from my chair. And I can't tell anyone I want to get out of my chair because I don't have those words yet. And even if I did have those words, I couldn't tell the Wizard to say them to Patrick or Kathleen because the screen is still black and silent.

“Hi.”

The voice comes from behind me and startles me so much I can feel my whole body strain against my chair as it jumps.

“Sorry. I didn't mean to scare you!”

Alexandra comes around to the front of my chair and sits on the edge of the window. I'm often put in front of the window when I'm in my chair with nowhere to go. I guess it's sometimes interesting to look into the windows across the way and watch staff and patients go about their days, but mostly it looks pretty much the same as what we do over here. Much as I like to be in my chair, I'd like to be somewhere else when I'm in it. Outside of this room.

The good news is that maybe someday soon I'll be able to tell them that!

The even better news is that Alexandra is here.

“I know you weren't expecting me, but I just thought, if it's OK, that we could work a bit? I checked with the nursing station, and they said it's fine with them. I guess I could ask you properly if that thing was on.”

She points at the Wizard, and I smile my best smile at her to let her know how happy I am that she is here. I don't think I need help to tell her that. She smiles back with her strange little sad-eyed smile.

“Good enough. I'll fire this thing up, then, and see if I can remember how to make it work without Shawna here.”

I watch her bringing the Wizard to life, and I am amazed that she is here. She was just here yesterday, and she seemed so tired and sad that I didn't think I would see her again for a long time. But here she is again—on a day when she doesn't have to come, a day when she just decided to come.

A day when she
wanted
to come.