It is late. My mother is probably in bed asleep by now, but I listen tentatively for a moment anyway, before I type into the search bar:
The first page of results is all highlighted blue; all sites I’ve visited before. It doesn’t matter, I need to read it again. Somehow seeing it written down makes it easier to process, as though I’ve unloaded part of the burden from my brain onto the screen.
I click on the first link, a simple wiki page.
Amyotrophic lateral sclerosis is a progressive neurodegenerative disease, usually presenting in patients over fifty. The disease is always fatal, with most affected patients dying of respiratory compromise after two to three years.
The bit that always gets me, every time, is “over fifty.” I have an old man’s disease. The doctors tell me that there are others, that I am not the only young sufferer or the youngest. But they cannot show me anyone else except sick old men leaving behind their grown-up children.
And if it is so rare, why me? Jealousy is an ugly emotion. It is not the warrior way. But I will never be that old man, never have children to sit upon my knee and teach about the way of things. And it is not only me I’m jealous for. I try not to think of my mother left alone, exhausted from two years of physical and emotional strain.
I try not to think of everything that comes between now and then, or rather to think of it, but as though it won’t be happening to me. Because although my brain works fine, eventually I will be exactly like the kids at the disabled school. Unable to button up my shirt or raise a spoon of food up to my mouth. Unable to master the simplest of skills.
It has started already. The aching in my hands, the intermittent trembling. Subtle now, but not for long. Months, perhaps, if I am lucky.
Legs, hands, arms, one by one they will give up on me.
If this were the olden days, I’d take a sword and trusted friend out into the yard and perform the last ritual. Quick and final. No mess except the blood to sluice away. But it is not; we don’t operate by that code anymore, and no one speaks of the honor that flows through our veins. And I am stuck inside this failing body.
3
Doctor Kobayashi’s office is on the third floor. You can see the tops of the trees through the window, laughing gently in the breeze; a stark contrast to the clean white walls of the hospital.
In here, the air is still, and there is nothing to laugh about.
Doctor Kobayashi has placed a bonsai on the glass-topped table. Intended, I imagine, to calm her patients: a touch of green, a symbol of the essence of life. The cycle in perfect miniature.
Tiny yellow leaves spill across the table between us like curls of caramel. Nothing lasts forever.
She watches me, her expression unreadable.
Judging me. They always do. Everyone.
Finally, she breaks the silence. “Have you had a good week?”
I shrug, stare at the table rather than look at her. I know she wants me to speak, but I don’t know what to say.
She cannot help me anyway.
4
“And finally, it’s time to dust off your straw sandals and kimono.” The newswoman gives a smile that might even be genuine. “Preparations are underway for this year’s Festival of Ages. The annual procession commemorating the founding of Heian-kyō takes place this Wednesday. The mayor, an honorary commissioner heading the proceedings, says he is greatly looking forward to the event. And so are we.”
Once, I would have gone—with my mother, or friends. We would have joined the crowds, cheering to the rhythm of the gagaku as we sucked on squid sticks and ate clouds of cotton candy.
The others would be swept up in the ceremony and excitement. I’d be staring at the costumes, calculating dates and changes in command.
So much has happened in one city; so many people come and gone.
I used to love that. Now it makes my stomach curl in on itself and I do not want to know.
5
“How are you today?”
I shrug, barely, trying not to think about this morning’s physiotherapy and my awful performance on the walking bars. Last month, I had been able to shuffle awkwardly down that runway, halfway using my legs. Today, they were bent and cramped and useless, and for the first time, my wheelchair felt like freedom.
“It’s difficult for me to help you if you will not talk to me.” She sighs a practiced little sigh that I am sure is meant to lay just the right amount of guilt.
I stare hard at the bonsai. It is almost bare now, only a few leaves clinging to the branches, and the yellow curls that spread across the desk at our last meeting have gone, swept into a garbage can somewhere.
She tries again. “How have things been since our last appointment?”
I do not answer. For a while she sits, studying me, then she breaks the silence. “Your hand is shaking.”
I want to turn away, to hide my hands in the folds of my sweatshirt. To deny it. But there’s no denying what is in plain sight. I nod. She cannot gather anything from one small gesture, right?
“That’s new. I’m . . . It must be difficult.”
I’ve heard those two words so often these past few months that it surprises me when she does not say them. And I’m grateful. “Sorry” does nothing.
I nod. “Sometimes.”
A tiny flicker of a smile crosses her face, and she waits, expectant.
I wish I could retract my words, suck the sound back into my mouth and stay silent. But now it’s out there, and she’s waiting for more.
And she didn’t say those two terrible words.
“Sometimes I . . .” and then I stop, because I don’t know what to say. I take a deep breath. “What will happen to me?”
“You mean your symptoms? Didn’t your neurologist explain all that?”
I blink the Google images away, of end-stage patients, all pillows and trachea tubes and desperate eyes. Trapped.
I shake my head. “No, I mean—”
What do I mean?
She watches me, waits, but I do not have the words.
“Life is full of mysteries,” she says sadly, “things that are only answered in the doing. I cannot tell you what it will be like, only that many have gone before you.”
We sit, neither of us saying anything, but it’s different now.
I listen to my breath, strong, unlabored. I let the instinctive rise and fall of it calm me. I do not have to think about that yet; in, out, in, it happens automatically.
The clock ticks by, counting the seconds, and I breathe, letting myself just be.
Is this what it will be like?
Not if the textbooks and search pages are right. It will be ugly.
“It’s not dignified.” The words are out before I hear them in my head, and they sound bitter.
“No,” she says. “The body rarely is . . . the mind, however, that you can control. That’s where you keep your dignity.”
She sounds so sure. Profound. And yet . . .
“I don’t know how.”
The clock is fast approaching the hour; two minutes left, but Doctor Kobayashi does not hurry. She sits, watching me, and for a moment there’s a question in her eyes, then she shakes it away, apparently satisfied. “Okay.”
She stands, crosses over to the bookshelves behind her desk, and pulls down a slender volume.
“Here.” She presses the book into my hands. “I want you to borrow this.”
• • • •
Making sure my bedroom door is firmly closed first, I pull the book from my backpack. The deep gray paper of the cover is soft and warm. Inviting. Calm.
I hold it for a moment before my eyes slide across the title. Death Poems: Last Words of the Samurai.
6
I blink, surprised for a moment at the bold, black print, no different from any other book. These are words of age and wisdom from the best of men, not written with a delicate brush, but typed onto a screen so long after they were first formed. Still wanted.
I skip over the long
introduction; I will read it later, but right now I want their words, I need the stillness and the gravity of men who knew The Way. At the first poem I stop, let my fingers glide over the page to feel the words before I raise the book to read.
I cannot mourn, for I have lived
a life
of mountain air and cherry blossoms, steel,
and honor.
(Tadamichi, 1874)
I feel the words float around me, settle on my skin, and then sink slowly into me. It is a while before I turn the page.
On journey long
I stop to rest and watch
the end of days
(Kaida, 1825)
I imagine leaning on the gate at the end of days, looking back, the sun warming my face.
I turn the page.
The whistle of the sword, sings;
smiles ’neath silver sun,
frees me with a final kiss.
(Okimoto, 1902)
I feel a breath of cool, fresh air across my arms, gentle and welcome.
I read and I read, one after the other until the words and feelings tumble through me, indistinct and beautiful.
And then my fingers rest upon the final page.
Words
are mere distraction—
Death is death.
(Tokaido 1795)
7
All through dinner I’m distracted by the echoes of the samurai and I barely hear my mother’s attempts at conversation. Finally, she sets down her bowl and, reaching out to me, asks, “Are you all right?”
I nod. “I was just thinking about something I read, that’s all. I’m sorry.” She smiles her bemused, proud smile, and I want to be with her instead of with those words. I try to push them aside and focus on the last of our meal.
“This is delicious,” I say, slurping down the last of the salty prawn broth.
She bows her head, an almost invisible movement, accepting the compliment. Almost invisible, but I see it, just as I see the sadness just beneath that smile.
I’m sorry, I want to say, I’m sorry.
• • • •
I almost show my mother the poems that night. I want to. I want to place them in her hands the way Doctor Kobayashi put them into mine. I want the words to swirl around her head and quiet the storm. But that would mean explaining where they came from. It would mean broaching that awful phrase, I am going to die, and I don’t think I am ready.
8
The words of the samurai hang in the air like the memory of heavy rain. I feel different somehow, as though the poetry has washed away a layer of pity and despair. But there is one poem that rises above the others, whining like a summertime mosquito:
The orange tea moth;
only witness to my faultless
victories.
I sit with a history book open but ignored, trying to make sense of it.
The orange tea moth;
And then I realize. All I am now is a failing body; a boy without an ending, who will not achieve. And even if I did, who would see it?
Not even the moth.
Soon after I was diagnosed, I heard my grandfather, distant and distorted, talking to my mother on the phone. “It is not right, a boy sitting alone all day. He should be out catching the world.”
I thought him foolish then. The world is difficult to catch if you cannot run after it. But maybe he’s right after all.
With his voice in my head, my fingers move the cursor across my screen and click open the web browser, they sift through recent pages until I find myself logging in to the KyoToTeenz network and staring at the profile I created days before.
UPLOAD
A PROFILE
PIC NOW
USERNAME
TAGLINE
AGE
GENDER
INTERESTS
There it is. The boy I’d like to be. The boy I am, beneath it all.
For three whole seconds I stare at the message “Post Successful.” I almost hit return, delete my entry, but I force my hands steady. I want this. I don’t want to be alone.
To distract myself, I scroll down the list of open chat rooms. There’s HomeworkChatz, and CollegeWorriez, and below that StReSsBuStInG, OMGAnime, and ILoveArnieSchwarzenegger. I log in to the first one, MondayTalk, an open forum, and watch the conversation unfold.
KittyL<3ve: What’s a girl to do?
KittyL<3ve: I mean, I have to choose, right? I can’t have both.
RaindropsOnKittens: Why not?
KittyL<3ve: Because that isn’t what you do. You choose. It’s like, you would not have more than one boyfriend, would you?
BlossomInDecember: Of course not.
Vixeninety6: Well . . . *giggles*
Meekkat: I wouldn’t even have ONE. I’ll take poster boys, thanks. Much. Less. Scary.
BlossomInDecember: You would not, Vixen!
BambooPanda: Aw, why so shy, Meekkat? We have got to get you over that. Right, GuitarGirl?
Vixeninety6: Okay, no, but I would think about it, and I don’t see why you can’t live out the fantasy and love BOTH bands. It’s not like they’re real boys you’re ever going to meet.
GuitarGirl1: She might! She might go to a concert and be asked backstage. One of them might ask her to MARRY HIM.
Vixeninety6: Oooooh.
GuitarGirl1: Yes, Bamboo, we do. Meekkat, u so pretty. And fun!
RaindropsOnKittens: Kitty and a Hot Boy sitting in a tree . . .
KittyL<3ve: Hush!
KittyL<3ve: You lot are so uncultured. It’s not about the boys, it is about the music.
Vixeninety6: Oooooh.
KittyL<3: No, seriously.
Vixeninety6: Sure. It’s not their perfect spiky hair and nice clothes? That whitewhite shirt? Those jeans?
KittyL<3ve: NO!
Vixeninety6: Well, if it’s not about the boys, I don’t see what the problem is. WHY can’t you like both?
KittyL<3ve: Because you don’t! You can’t!
SUSHIKING: Hi everyone. *scrolls up*
BambooPanda: Hey everyone, where did Meekkat go? Did we scare her off? )-:
BambooPanda: I’m sorryyy! I didn’t mean it. You can have all the poster boys you want, and I won’t even make you TALK to a real boy. I’ll tell them all to go away. I’ll be like your bodyguard!
Vixeninety6: Why NOT? I have a shelf full of manga, and I like them all. And shoes! I love all my shoes!
KittyL<3ve: Not the same.
Vixeninety6: But it IS, unless you buy into the corporate brand loyalty thing, AND think of the bands/their members as things, not as people. It’s WEIRD.
KittyL<3ve: It’s not!
SUSHIKING: Whoa, people!
SUSHIKING: Don’t insult a girl’s musical tastes.
KittyL<3ve: Thanks, Sushi. <3
SUSHIKING: And yeah, you scared her off, Panda. *shakes head*
Vixeninety6: That’s just it, she hasn’t GOT any! She’s letting herself be steered by a stupid preconception. I’ve had more than one best friend since I was ten, and music is the same.
SUSHIKING: Aw, leave her be.
0100110101100101: But rock stars burn out before you even know they were hot. Next week NEITHER of them will be popular, and she’ll have wasted all her energies.
SUSHIKING: No. She will have witnessed something beautiful.
I watch the words appear, one line at a time, so ordinary and significant. I talked like this, once.
I almost join them. My fingers hover over the keys, as I think the word “hello,” over and over, but I cannot bring myself to type it. I do not know what would come next.
So I sit there, a voyeur on normal lives, and in my little room, in my chair, alone, I enjoy their company.
• • • •
There’s a knock at my door.
“Time for your medications, Sora.” My mother walks in and places a glass of water and a handful of pills gently on the desk beside me. “Do you need some help to get ready for bed?”
“No thanks. I can manage.” I may be growing weaker, but I can still undress myself.
She sighs, then kisses the top of my head. “Good night, then.”
“Night, Mama.”
She pads out quietly, closing the door behind her. And there’s a pause; I know she’s standing there, waiting, as though she does not know whether I can really manage. It is several minutes before she walks away.
Reluctantly, I switch off the computer monitor and scoop up the pills—all in one go. It’s better to get it over with. As they hit the back of my throat, I raise the glass and pour half of the water in behind them. I swallow, hard. Done.
At first, I imagined this cocktail of drugs working miracles, sewing up the broken parts of me. But this is no cure, it merely buys me time, alleviates some of the pain. I wish it were a cure.
My head aches, dully, as though I’ve thought too much today. My mother is right, it’s time for bed. I spin my chair around to face my clothes drawers, pull out an oversized T-shirt, and wheel myself across to the bed.
I turn down the duvet so I won’t have to caterpillar my way under it, and lay the shirt out flat across the end of the mattress. Then, with one arm on the bed and the other on the arm of my chair, I heave my weight up and over, swaying briefly on my feet as I turn. I land with a heavy plumph upon the bed, breathless from that one movement.
Useless body.
The worst bit done, I let my breath slow and the shaking in my arms and legs subside before I reach up to pull the shirt I’m wearing up over my head.
It’s a T-shirt. I’ve given up wearing buttoned shirts. I do not think my mother’s noticed yet, but it will not be long. It won’t be long before she bustles in here morning and night to help me with all the tricky things. Buttons and zips first. Then this, the simple act of pulling off a shirt. At first she’ll do it because she wants to make things easier, but then, because she has to.
I imagine her fingers, too close as she rids me of my jeans. Her perfume, sweet and sharp at once, clouding the room, settling on my skin and in my hair.
The Last Leaves Falling Page 2
