by Liane Shaw
I just really wish I didn’t.
I wish it more now than I did when I first came. Now I have more important things to do than lie here and wait for my lungs to behave themselves.
I want everyone to stop coming in and checking on me so that my rainbow can take me back in time to school or to the group home…or any place where I can get out of this bed and do something interesting.
Even better, I want to be well enough for Alexandra to come and take me forward in time so I can get out of this bed and do something interesting right now!
“I’ll be back in a few minutes. You hang in there. You’ll be fine. You’re the strongest person I know, Joanie. Remember that.”
The strongest person he knows. I like the sound of that. I’m trying to remember if anyone has ever said that to me before. No, I am fairly certain that no one has ever called me strong before. And I am completely certain that no one has called me the strongest. Mostly I hear words like “frail,” “weak,” and “fragile” when I hear other people talking about me.
So, am I weak or am I strong? More words that don’t have clear meaning. Do all words have more than one meaning?
If so, how do people communicate at all? How do they know the meaning of each word they’re using when they speak? Two people can speak to each other in the same language and still not understand each other at all.
Must cause a lot of arguments.
I’ve never had an argument. Except inside my head with my own body.
I wonder if Alexandra has arguments with people. She’s so quiet, I can’t imagine her taking enough words to disagree with anyone.
I wonder if she thinks I am strong or if she sees me as weak.
Or if she even thinks about me at all when she isn’t here.
I don’t think too many people looking at me would vote for strong. I see it in the eyes of some people when they look at me.
They feel sorry for me. Not in the apologizing kind of way but in the way that says they think my life is somehow less because it is different.
When I was younger, I sometimes overheard people saying things like “it’s a shame” and “too bad she’s so damaged.” Damaged! A strange word to use for a person. As if I’m broken or something. I tried not to listen, but it’s hard to do when they’re standing right in my room and speaking in perfectly loud voices, seemingly believing that my ears are unable to hear their words. At least I’m guessing that’s what they believed.
If my fingers could be persuaded to go where I want them to go, I would place them inside my ears to block the outside world at times. I try not to think about thoughtless things people sometimes say, but my mind doesn’t always manage to shut them out any more than my ears.
Words.
I sometimes imagine a world without them. Everyone quiet and thinking instead of spurting out syllables all the time.
I wonder if we would all figure out how to communicate with one another better than we do now.
Alexandra doesn’t use many words. I’m sure she has lots of them somewhere, but she doesn’t seem to like sharing them very much.
I wonder what kind of relationship Alexandra has with her mother. Does she talk to her about her day? Tell her about everything she does the way Debbie used to with me? Or is she as quiet at home as she is here with me, keeping her words inside where no one can find them but her?
I’m not sure why, but I really think the reason Alexandra doesn’t talk to me might have more to do with her than it does with me.
Maybe if we figure out a way to understand each other,
I can help her to find her words.
Finding the words in silence is one of the things I do best.
Chapter 17
I don’t know who came to help us out of the car. I don’t remember how we got to the hospital.
And I don’t remember who told me that Cali was dead.
I didn’t go to Cali’s funeral. I’ve never seen Cali’s mother or father again. I imagine they wonder every night why Cali died instead of me. I imagine they wish it had been me.
I wish it had been me.
Right after it happened, I replayed new versions of that night in my mind every day, trying to replace the truth. An endless movie reel with different takes of different scenes that all ended in a way that didn’t destroy people’s lives.
Take one. I change my mind about the party and instead spend my Friday night rehearsing for the recital. Cali’s mother decides that she doesn’t want Cali going to the party without me. Cali comes to my house and tells me I’m an idiot for ruining her love life. I’m minus one best friend, but she’s still alive.
Take two. I stick with Cali like I promised her I would, and I’m there when she gets the stupid idea to borrow Matt’s car.
I talk her out of it the way she expected me to. I do my job as her friend. She’s still alive.
Take three. I grab the keys and run back into the house and throw them at Matt, telling him what an idiot he is. Cali doesn’t speak to me for years and years. Maybe not even for the rest of her life—her long, healthy life.
Take four. The one that haunts me the most. The one where I don’t panic at the thought of driving and I take the wheel when Cali asks me to. I drive slowly and carefully, with the radio off like my dad always taught me, and I stay on the road. We go to the coffee shop and drink two cappuccinos and buy a third one for Matt and drive slowly and carefully back to the party. We all live happily ever after. The end.
Sometimes I dream the different versions, snuggled down in my blankets feeling safe and warm and good. Then, for just a second when I wake up, I think that it’s a true memory. Sometimes
I actually smile at the sunshine pouring itself through my window and wonder what time Cali is coming to walk with me to school.
For a second, life is in color again.
Then the past tense crashes onto my head, pushing me back to reality.
Cali isn’t coming to walk me to school.
Not today. Not tomorrow. Not ever. Because of me.
And the sunshine keeps pouring into my window, mocking me, reminding me that the world will just keep on turning no matter who dies and who lives. The sun will keep on coming up, and the stars will keep on shining down, and everyone will just keep on breathing and eating and sleeping like nothing happened.
I’m still here, breathing and eating and sleeping. Taking up space.
Cali filled all of her spaces with noise and laughter, positive energy electrifying the air, invigorating anyone who came into contact with her. Now that she’s gone, everything is just too quiet. The silence is dark and heavy, and I carry it around with me like a huge rock that pushes me down until I start to feel like I’m the one they buried. I should be the one they buried.
At the very least, I deserved to be somewhere locked away.
I really thought I was going to be sent to prison.
But I wasn’t.
Probation, no driving, community service.
Not much of a punishment for taking someone’s life.
Maybe there isn’t enough punishment for taking someone’s life. Nothing can change it. Nothing can bring her back.
Now I just have to live with it. Whatever that means.
I don’t even know who I am anymore. I don’t know what I’m supposed to do with my life. Except spend two hundred hours at a hospital with someone who can’t even tell me what she would like to do, whether or not she even likes music, or if I’m punishing her by forcing her to listen.
Punishment without a crime.
Joanie can’t tell anyone if she even wants me there or not.
I can’t imagine what it must be like to be her—locked away inside a body that won’t do anything you want it to, dependent on everyone else to take care of even the most private parts of your life. No
t able to tell anyone what you want or need, trapped in there, at the mercy of everyone around you. At the mercy of your own body.
What kind of a crap world decides that someone has to live her life that way? Why is she the one trapped while someone like me is allowed to go free?
“Why are you watching television? I thought you had to go to the hospital. You can’t back out on this, Alex.”
I look up at my father in surprise. I didn’t even realize that the TV was on.
“They called yesterday and told me not to come today. She’s too sick to have visitors.” I wonder what that actually means.
I mean, she’s already in a hospital. How much sicker can she get?
I actually think that the real reason they told me not to come is that they’ve figured out I’m useless. Patrick saw me. He knows. But I’m not going to tell Dad that.
He looks at me for a second as if he’s trying to decide whether to believe me or not. He’s trying to get a good look at my eyes, but I turn away. I don’t want to get a good look at his eyes—his tired, sad, disappointed eyes.
“OK. Well, I guess I’ll let you get back to your show.”
My father deserves someone better. Someone who doesn’t make him sad all of the time. But he’s stuck with me.
And now Joanie’s stuck with me too. She definitely deserves someone better. She lies there with nothing to do all day, and
I show up, and she still has nothing to do.
It’s strange, though. The thought of not going back isn’t a good one. In a weird way, it’s nice to be with someone who doesn’t talk and doesn’t seem to expect me to. I mean, it should be ridiculous, the two of us sitting there all quiet and staring at each other. But it isn’t.
I wonder why.
“Alex?” My father’s voice breaks into my thoughts again. “Someone from the hospital is on the phone for you.”
I look up at him as he hands me the phone. I stare at him until he gets the message and leaves the room.
This is it. I knew it! They don’t want me to come and see her anymore. I messed it up.
They’re calling to tell me I’m done.
What’s going to happen now? My father is going to be so upset when he finds out I blew it. Again. Will Nelle have to find somewhere different for me to go and pretend I’m a decent person? Or will they finally come to their senses and lock me away?
“Hi.” I’m so nervous that I almost can’t get the sound out loudly enough to be heard. Maybe they’ll think I’m not here and hang up. That would be good. I don’t want to hear what’s coming next.
“Hi, Alexandra. Glad I caught you. Listen, I know we told you not to come in, but Joanie had a good night and is having a much better day than we expected, and we thought it might be nice for her to see you. She’s had a pretty boring few days. Could you come in today? I know it’s short notice, but I’d like to get the transfer lesson done so you could maybe try taking Joanie for a walk if you’re up for it. I think she could use some fresh air.”
“Yes. Sure. OK.” Three different syllables all saying the same thing. I’m so cool.
“Great! See you soon. I’ll let her know you’re coming so she has something to look forward to.”
He hangs up, and I just sit there staring at the phone.
“Alex? Everything OK?” My dad comes back into the room again. I look up at him and smile before I can stop myself.
“Yeah.” I ignore the surprised look on his face and hand him the phone. I’m surprised too. I have no idea if I’m up for a walk. I avoid going outside as much as possible.
I shake my head a little and head upstairs to get ready. Five minutes later I’m out the door. My face feels a little strange, and I realize that I’m still smiling.
It’s been a really long time since anyone has looked forward to seeing me.
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 nothin
g 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.
