The Color of Silence (11 page)

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 while?”

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.

Allison. I haven't seen her in a long time. She's my caseworker. She's supposed to keep track of me and my life,
I guess, but she has lots of kids to follow around. I think she must live near my group home because she was Debbie's worker, too, and she used to come in quite a bit when I was there. This hospital is pretty far away from the group home, so maybe she doesn't have time to get here. I'm glad she's “on board” with Shawna's idea, though. Like we're all on a big ship and heading off somewhere exciting.

“I have to leave now, but I'll be back in touch soon.” Shawna moves out of the room quickly, looking like she has somewhere important to go.

The room is still buzzing with excitement after she leaves. Or maybe it's just me.

After all this time, someone is going to start trying to help me talk again!

I look up at my rainbow. I look at one stone after another, focusing on each one, working to make sure my eyes go where I want them to go when I want them to go there. I'm pretty sure the machine won't be made up of colored stones, but it can't hurt to try to get in shape!

I have absolutely no idea what the machine will look like or how it will work or even
if
it will work for me.

But it
might.

Patrick has always told me that I tell him things with my eyes.

Now maybe I'll get a chance to prove to him that he's right!

Chapter 21

Dad's upstairs in the den, so I just let the phone ring until the answering machine picks up.

“Hi, Alexandra. This is Kathleen over at the hospital.
I hope I caught you in time because I'm calling to ask if you could come in tomorrow. Joanie has a speech pathology appointment, and if you could come in, that would be really helpful. We're hoping you will be able to help out with her sessions. It's at two o'clock, so if you could get here at one thirty, that would be great. Call if it's a no, otherwise we'll expect you then.”

First taking Joanie for a walk. Now taking her to speech therapy. Helping out with her sessions.

I guess instead of firing me, they decided to make me into someone useful.

I wonder what a speech pathologist can do for Joanie.
She's already seventeen, and it seems like no one has done much to help her communicate so far.

Then again, I actually have no idea what has gone on in her past. I don't know where she lived before or where she went to school.

I don't really know much about her at all.

About three months after the “accident,” my dad and my doctor tried to make me go to a speech pathologist to try to figure out why I wasn't talking. They told me that I needed help to open up.

That was about a month after “Plan A,” when they tried to get me to open up to a psychologist.

Neither plan worked out for them.

Psychologists are there to help people fix their problems.

But my problem is that Cali is dead.

No one can fix that.

Speech pathologists are there to help people find a way to speak, because they have something to say and need help doing it.

I don't have anything to say.

My words are useless.

But I'm glad to hear that Joanie is going to get someone working with her. There has to be something someone can do to help her. I get a feeling when I'm with her that she knows exactly what's going on and wishes she could tell people what she thinks. It's something in her eyes when she looks at me.

Of course, I don't actually know what I'm talking about. I've never known anyone like Joanie before, so I don't really know anything. I can't imagine what it's like to be her.

I've always been claustrophobic to the extreme. I don't know why, but I can't even go on rides at the fair, because the minute I get on, I start to panic because I know that a stranger is in complete control over when I can get off. And planes? Well, let's just say that my one exciting plane trip with my dad would have been a lot nicer if someone had thought to knock me out first.

Sometimes, when I look at Joanie, that same closed-in feeling starts to build in my chest, and I almost start to panic at the thought of what it must be like to be her.

She can't tell anyone if
she
starts to panic. She can't say what she wants them to do or not to do—what she feels or doesn't feel. If she's hungry or tired or happy or sad or lonely.

If she wants me there or would rather I got lost.

We can guess by looking at her face, but that's all it is.
A guess.

It would be awesome if speech therapy could change that for her, but I don't know what they'd be able to do. I actually know nothing about it at all. I've heard of sign language, but Joanie can't use her hands. She can't point or nod her head either. What else could there be?

Maybe I should google it. There must be lots of information about this stuff online. It might help me to understand Joanie
a little better if I understood what she's up against.

I'd probably be a lot more helpful if I take the time to learn a few things before I go in. But I don't really use computers much anymore.

I used to be on my laptop all the time. Cali was a total Facebook fanatic, which meant I had to be on there or she would be offended that I didn't notice her posts or comment on her new profile picture or answer her fifteenth message of the day.

I haven't used my laptop since the day of the party.

If I have to use the computer for school work, I use the desktop up in the den. My dad's pretty cool about it, even though it's supposed to be his work computer. He keeps all of his business accounts and things on there and all of our finance stuff, so he doesn't really like me to fool around on it. But he lets me use it.

He's never even asked why I don't use my laptop instead.

I head upstairs and knock on the door of the den.

“Yes?” Dad's voice comes at me, muffled by the door.
He's obviously too busy to even stand up and open it.

“Um. Are you using the computer?”

“Yes, for another couple of hours. Do you need something?”

“No, it's OK.”

I wander down the hall and into my room. My laptop is sitting on my desk top. Would my Lit teacher call that ironic?

It's bright purple with flowers on it. Cali helped me go computer shopping. She didn't ask about speed or memory or performance. All she wanted to know was how many colors and different designs there were to pick from. She said it was all about packaging.

In spite of the flowers, it's a pretty nice machine.

Maybe because of the flowers.

But now I can't turn it on.

Cali was in charge of all the important parts of computer maintenance—desktop picture, screensaver, cursor arrows that aren't arrows at all but look like flowers, so it matches.

If I turn on the computer, all I'll see is Cali.

The thought of seeing her face brings that same feeling of panic that the roller coaster does, totally trapped and moving too fast.

I'm not ready for this.

Maybe I'll just look it up another day when Dad's computer is free.

Might be safer that way.

I just hope I don't screw anything up for Joanie tomorrow.

Chapter 22

“So, today is your first session with Shawna. Alexandra is going to take you down to her office and stay with you during the session. I think Shawna is going to teach her some of the practice exercises so she can work with you when she's here.”

Patrick smiles at both of us. I smile back, but Alexandra doesn't. She just looks at him with eyes that seem a little uncomfortable. Maybe she doesn't know where the speech pathologist's office is and is worried that she will get us both lost. I know she's not going to ask, either.

Alexandra doesn't seem that excited about today, but that's OK because I'm excited enough for both of us! I'm also unbelievably curious. What will it look like, this magic machine that can use my eyes to give me a voice?

Patrick is still talking but I stopped listening for a moment so I don't know what he is saying. Alexandra is nodding, so
I assume he is telling her how to get where we are going.

“All right, ladies. I'll leave you to it. Oh, wait a minute.
I forgot. Shawna asked me to be sure you have this.” He goes over to the closet and pulls out a big plastic board.

“Here's your tray, Joanie. I'll stick it on for you.” Oh, right. My tray. I haven't seen that in a while. I don't really have much use for a tray. I think it was specially made for my chair so it always stays with me, but I honestly can't remember the last time there was a reason to put it on. It's rather big and bulky, and so no one really bothers with it. Is the machine going to sit on it, I wonder?

Patrick pulls out the two plastic knobs on either side of the tray and places it carefully across the arms of my chair, snapping it into place.

“All right. Now you're good to go. Alexandra, you know where you're going, right?”

Alexandra nods as she flips the locks off my wheels. She pushes me out of the room and down the hall to the elevator. Patrick waves to us from the nursing station across from the elevator doors. Alexandra hits the button with the down arrow on it, and we wait. After a few moments, the doors slide open and she wheels me inside.

Alexandra is standing behind me with her hands on the handles of my chair. She stands so still, her body as silent as her voice. The ride is short and smooth, and a small dinging noise announces our arrival on the ground floor. I like the ground floor. It bustles with energy. People are everywhere, talking and moving and laughing and sometimes crying.

Alexandra has her drum shoes on today, and I like the way it feels to be clicking down the hallway with her. We sound important, and I imagine that some of the people buzzing about look our way and wonder about us. We stop at a door at the end of a long hallway. Alexandra steps in front of me for a second to open the door and then pushes me in.

“Hi! I'm glad to see you. Both of you. Thank you, Alexandra, for coming along. Come on in here and we'll get started. Oh, good. They remembered your tray. I thought it might be easier than trying to find a table the right height.” Shawna bustles about a little bit, then picks something up that I can't see very well and puts it on my tray. I look down and try to see what it looks like, but I can't quite figure it out.

“OK, so I was wrong on that one. The tray is too low. I'll have to figure something else out. I'll be right back. Alexandra, could you get the computer turned on for us so we can get started as soon as I'm back?” Shawna leaves the room, and Alexandra reaches down to the object on my tray. She holds it up so I can see it and I try to smile at her in thanks. She smiles at me, so I guess she understood. I hope.

It seems to be some kind of black computer screen, which looks rather heavy, judging by the awkward way Alexandra is holding it. It does look a little different from the computers we used to have at school. I liked the games and exercises that Ms. Blaine did with us on the computer, but I don't remember computers being any help when I wanted to tell people what I was thinking.

“OK. Let's try this again.” Shawna is back. She has something in her hand that looks like a box. “Alexandra, can you try to lift the machine for me?” Alexandra lifts the computer up again, and Shawna slips the box shape under it, shifting it up so that the screen is in front of my eyes.

“Perfect! All right. We're in business. Alexandra, you sit here, right beside Joanie, so you can see both the screen and her face. I'll sit on the other side.” Alexandra follows all of Shawna's directions. Shawna doesn't seem to notice that she doesn't talk.

Which is pretty funny when you think about it.

“Joanie, this is the new communication technology that
I told you about. Well, not really new, but it's new to us here. It's called Eye Gaze, and from what I understand, it's different from anything else you've done, so it will take time and patience to figure it out and see if it will work for you. OK?”

That's OK with me. I have lots of both. I hope.

“Alexandra is here because we are hoping that she can learn enough to help you practice using the machine when
she visits. I imagine you know your way around a computer.” She looks at Alexandra, who nods.

“Good. Let's get started then.”

The screen lights up, and lots of words and images flash at me. It's too full, and my eyes feel overloaded. I try to keep them open, though, because I don't want to miss anything. Shawna touches the screen in a few places and everything disappears. A page of crisscrossed squares pops up instead.

“This computer has a tiny camera embedded in it that is very sensitive. It will follow your eyes when they move and figure out what you're looking at on the screen. See the two little lights? Even the slightest movement will be recorded and then the computer translates what it sees into the words you're looking
at. We're going to start by seeing if your eyes track images on the screen. All I want you to do is to try to focus your eyes on the image that pops up, and keep them there as long as you can.”

One of the squares turns yellow, with the word yellow in black letters in the middle of it. I can see it because it is in the middle of the screen. I tell my eyes to stay still and look at it.
I am nervous, even though my eyes are the one part of me that seems to respect my wishes most of the time. I can move them from side to side and up and down, especially when my chair holds my head still. But I don't know if I can move them in the right way for the computer to understand me. What if I blink at the wrong time?

I can feel my eyes moving up and down. The yellow square slips in and out of my sight, like sunlight blinking in my window from behind a cloud. I know that I'm doing it wrong. I can feel Alexandra and Shawna both staring at me intently, their eyes focused on me the way my eyes are supposed to be focused on that one yellow square. I don't want to disappoint them.
I don't want to disappoint me.

I focus every ounce of me into keeping my eyes still and on the middle of the screen.

“Yellow.” A strange voice booms out of the computer, making me jump.

Did I make it do that?

Is that supposed to be
my
voice—bringing a word that's inside of my mind right out into the air?

It's like magic.

Maybe I've finally found my very own Wizard who can help me share my brain with the world!

“
Pe
r
fect
! Now we're going to move it around the screen a
little.” Shawna sounds happy, and I am glad I did it right. Alex-andra doesn't say anything, and I don't want to shift my eyes to look at her because I don't want to lose my focus on the screen.

The square moves up to the corner, and I try to follow it with my eyes. I am still feeling a little nervous, and at first, nothing happens. I am looking in the wrong place and the computer knows it.

“It's OK, Joanie. Just relax and try to get focused on the square. You don't have to stay there long. Just a second or so will do it.”

I take a breath, not a deep one or I will choke, but enough of one that I can calm down and focus. I raise my eyes to the square and tell them to stay there.

“Yellow.” We did it!

The color moves again, and my eyes move with it. Sometimes I miss it, because it jumps from the very top to the very bottom, and I don't move with it quickly enough. When that happens, Shawna touches something at the top of the screen, and the image slows down. When it slows down, my eyes can follow it much better, and I start getting almost every one.

I don't know how many times the Wizard tells us it is yellow, but every time is exciting because I am the one making it happen.

“That's wonderful. A really good start. I'm going to switch it up a little and see if we can take it a bit further. This time, I'm going to bring up two different colors, and I just want you to choose which one to look at. Pick the one you like best.”

This time two squares light up, a blue and a yellow. They are beside each other on the screen, so I will have to be very careful if I want to focus on only one.

I'm looking at both of them, and I don't have any idea which one I like the best. I like all colors. Every color has its own personality. They talk to me even though they are as silent as I am.

I guess it doesn't really matter. But, even if I could pretend to have a favorite, I am not sure if I can move my eyes carefully enough to tell the camera which one I am looking at when there are two sitting there looking at me.

“Yellow.” The Wizard says it for about the hundredth time. It's not as exciting this time, though, because I didn't look at yellow. I didn't look at anything yet. I was just getting myself relaxed and focused so that I could try to control my eyes. Did my eyes go to yellow without my permission? Is this going to be like the blinking exercises I used to do when no becomes yes and yes becomes no and then no one understands me?

Alexandra is watching my face the way Shawna told her to. I take a chance and look at her eyes and wonder if she thinks
I said yellow as well. She looks into my eyes for a moment and then shakes her head slightly.

“Not yellow?” Shawna asks. Alexandra looks at her with startled eyes. I guess she didn't think she was being watched. Alexandra kind of shrugs and shakes her head again. She takes a deep breath as if she is going to speak, but nothing comes out.

“That's OK. We're barely getting started. It takes practice to get control over the eyes, Joanie. Our eyes move around on their own a lot, and using them to communicate can be a challenge. Let's try again. This time, try to look only at the new square, the blue one.” She stresses the word blue. Does she think that I don't know my colors? I've known my colors since I was about three! But I guess she doesn't know that. At least, not yet.

“Try to tell us you are thinking about blue, not yellow. Even if you like yellow better.” She smiles at me encouragingly. I feel encouraged. I want to shut my eyes so I can relax better, but I'm afraid if I shut them, when they open, I will lose control and make a mistake again.

I tell my eyes to behave and to concentrate on the blue square, even though I like yellow just as much. I am thinking about blue. I can see those two little lights that I think must be the camera that Shawna says is inside the computer. I tell my eyes to ignore them and look at the screen.

The room is almost silent for a second, nothing but the sound of the computer gently whirring along. I can't even hear Shawna or Alexandra breathing. Perhaps they are holding their breath so that nothing can interfere with this moment.

“Blue.”

“Blue!” Shawna says, as if it is the most exciting word ever said.

“Blue,” Alexandra whispers, the syllable floating out on a single puff of air. Shawna doesn't notice, or pretends not to.

Blue! My mind screams it along with everyone else. Blue, blue, blue, blue, blue. I thought it. I wanted to think it. I wasn't thinking yellow. I was thinking blue, and the Wizard said blue, so everyone heard me thinking blue!

Maybe, if this really, really works, none of my colors will be silent anymore.