"Mom, I Can't Walk Any More."
A baby sits when it;'s around eight months old, crawls when it's ten months old, and walks when it's over one year old. I used to walk, then I gradually went back to crawling, and now I'm sitting most of the tim1! I'm degenerating. And some day, I suppose, I'll be bedridden . . .
Is it only a matter of me being patient? One year ago, I could stand, I could talk and I could laugh. Now, I can't walk, however much I try, however much I grit my teeth and try to hold on with a frown.
'Mom, I can't walk anymore,' I wrote on a piece of paper, restraining my tears. 'I can't stand even if I hold on to something.'
I opened the door slightly and gave it to her. I closed the door again quickly because I didn't want her to see my face, and I knew it would be painful to see Mom's face.
I crawled three meters to the toilet. The corridor was chilly. The soles of my feet are soft like a normal palm of the hand. But my palms and knees are hard like a normal sole of the foot. Crawling's not a nice thing to do, but it can't be helped. It's the only way I can move around . . .
I felt somebody behind me. I stopped and looked back . . . There was Mom crawling behind me, without saying anything . . .Her tears were falling to the floor . . . All my suppressed emotions suddenly burst out and I started crying.
Mom held me tightly and let me cry as I wished. Her knees were soaking wet with my tears, and her tears wet my hair.
"Aya, we're sad, but we'll keep going, OK? I am with you. Now, let's go back to your room before your bottom gets cold. I'm strong enough to carry you on my back. Even if we have an earthquake or a fire, I'll help you first. Don't worry and sleep tight. There's no need to think about unnecessary things."
Then she carried me back to my room in her arms.
I've become a person who can do nothing but weep and whimper. The lump of an inferiority complex is growing inside my brain. I think it's a product of being disabled. But I'm still alive. I'm continuing to breathe in order to live - because I can't die, and nothing can be done about me. That's a dreadful way to say it. When I cry, I get wrinkles on my eyebrows and my face becomes ugly. To improve my face when I look in the mirror, I try to grin even though there's nothing funny.
Let's Live
I want to inhale the blue sky with all my might;
A refreshing cool mint breeze will gently caress my cheeks.
Scattered white clouds reflected in your clear crystal eyes.
I've been dreaming of this wonderful moment . . .
I want to jump up toward the blue sky with all my might;
A robe of cobalt blue feathers will gently envelop me.
Without thinking I am ugly,
Earnestly believing that I may be useful somewhere.
Where do you think I should go?
Always crying by myself,
My notebook is my friend;
Answers it cannot give me,
But my spirit is lifted when I write.
I am asking for a helping hand,
But I can neither reach out nor touch;
My voice only echoes, yelping into darkness.
Evolution from monkey to human took an incredibly long time,
But degeneration is so fast . . .
I dislike being alone during the daytime. Afraid I may no longer be able to talk, I read picture books aloud and do vocal exercises. Today I did deep breathing give times and stretched my neck ten times.
Mom says that I shouldn't try to do too much even when I'm on my own. She thinks it's dangerous. She's always worried until she comes home and sees me. Although those words would make my life when more passive, I can see they're reasonable because in fact I do fall over - my lips get swollen and I break my teeth.
Worried about me being alone, Jun-chan and her mother sometimes come to see me. The middle aged woman from next door also pops in to see what's happening. But my heart's not satisfied. It's very hard to live through each day without any purpose. I can only think about odds and ends in my head, but I can't do anything. How long will this life go on? . . . Mom, I'm in pain. Please help me . . .
Now that it's also dangerous for me to take a bath on my own, either Mom or Ako comes in with me, wearing shorts. Ako washes my hair and my back. I can't raise my right arm any more. It seems my shoulder joints have stiffened up.
Message to Dr. Yamamoto
You said "Vakye what's left rather than what's lost."
The light will shine some day, and the green buds will appear . . .
Have hope, look toward the future, and stand up, keep going don't give up . . .
Those are the passwords!
"Nothing will come back even if you grieve over it,"
said the doctor I trust. "Develop what's left more than what's lost."
I'll try to keep going.
I swear I won't get depressed . . .
It's started to rain.
I envy the changeable nature of the weather . . .
But people can't live being so changeable, can they?
-The contents are irresponsible
-My mind's sloppy
-My writing's shaky
Nothing's any good, you idiot!
So what would you say is left for me?
I had a dream that my family went on a trip to a place that you couldn't go to in a wheelchair.
"Have a nice time," I could say with a smile. "I'll be waiting for you here at home."
I think things like that may become more frequent. I want to be ready for when they become reality.
YOU ARE READING
1 Liter of Tears (Ichi Litre No Namida)
Non-FictionKitou Aya is a young highschooler who finds out that she has Spinocerebellar Atrophy. This disease causes the person to lose control over his or her body. Because the person retains all of her mental ability, this disease is like a prison. Through h...