The Last Leaves Falling (3 page)

But then I think,
I’m more than that.
I
want
more than that. So I write:

I am not exactly lying. I would love to spend my days in lecture halls until my hair is as white as the chalk dust floating through the air. I just . . . will never get the chance. But they did not ask me that.

I read the words again from start to finish and try to picture what someone else would see; what do I look like to a stranger? But even
I
struggle to see myself without this disease.

At the bottom of the screen are two buttons, save and post. My finger hovers over post, but those shocked, sad faces from the school halls and the streets flash right before my eyes, judging me, and I do not click. I can’t. I’m not ready.

2

My mother and I sit on either side of the table and eat in silence. She steals glances at me over the bowl of noodles, and I hope she does not see the tremor in my fingers. It is new, and I do not want her to know yet. Once she sees it, she will do what all good mothers would, and fuss, but I want more time to do the little things myself.

I catch her eye, and she smiles her oh-so-tired smile. It is me that’s done this to her, and I hate it. I wish that I could turn back time, change something, take her hand and run and run and run in another direction so that ALS can’t find us.

She’s curious, I know, but it takes her a moment to ask about my visitors. “I don’t think I have met your friends before.”

“No.”

“They seemed nice.”

I nod, picking up my chopsticks.

“Will they come again? Perhaps you should invite them for a meal.”

“They are very busy, Mama. I do not think they’ll have the time.”

She hides it well, but I imagine I can see the longing in her eyes. I should be busy too.

“Perhaps we
should
apply to that other school.”

That “other” school is a place for children who have disabilities. I am
not
a special student. I don’t need help to tie my laces, yet, or to read, or manage my emotions.

Even if I am around for long enough, no one graduating from a special school will get a place at university.

We declined. But now I think my mother’s having second thoughts.

“Are you going past the library tomorrow?” I ask, to change the subject.

“I could.”

“Great. If I write you a list, could you pick me up a couple of books? I can study on my own, Mama. You don’t need to worry.”

“You know, we could go to the library together. Or the park? We could go for ice cream?”

I shake my head and she sighs.

“Well, you have a session with Doctor Kobayashi tomorrow, don’t forget.”

I nod. I can avoid the park, social trips, and errands, but weekly meetings with my counselor are compulsory, part of the terminal package. At the end of every week, instead of going to the extra classes every other boy attends, my mother drives me to the hospital and I sit for one stifling hour in that airless room, watching the seconds tick by until she will drive me home again. Doctor Kobayashi seems pleasant enough, but I do not know what to say to her. That I’m scared? That I wish it was someone else sitting in this chair? That I don’t deserve this?

If I were a child, I’d cry. I’d scream. I’d throw my Hanshin Tigers baseball through the window as hard as I could.

But I’m not, and I cannot say these things.

•  •  •  •

I am so tired that my eyes itch, but every time I close them, fragments of the day flash into view. The look of pity on Reiko’s face as she leaves. Tomo, in his baseball uniform, sliding into home plate. An empty desk. A bustling classroom filled with people who don’t fit into the real world. The lines around my mother’s eyes.

When I can’t stand it any longer, I swivel my hips so that my legs flop out of bed, and I sit, haul myself into my chair, and turn on the computer.

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.