Why Noriko, who expresses her feelings with her gaze, is “talkative” at ALS

Only I, and why only I, talk with the waves

This is a haiku piece by Noriko Kubota. I was worried before I went to see her for an interview. Noriko is an intractable ALS patient, unable to speak or move her fingers. She is unable to speak or move her fingers, but she uses her free eye movement to communicate using a computer that allows her to input data with her gaze. I wondered if it would be possible for him to conduct interviews…

A “conversation” was sparked by eye input.

But my fears were unfounded. Noriko greeted me, her skinny body lying on a special chair, but her skin was glowing and she was wearing a cute pink T-shirt. She used to be a junior high school teacher, so I had imagined her to be a woman with a crispy atmosphere, but she was something else.

When I greeted her, she said.

“Because I like to be flashy.

The words suddenly appeared on my PC monitor. I quickly typed it in with my eyes. He reacted quickly. Seeing my surprise, he smiled mischievously.

Her typing speed was so fast that it was almost as if she was talking to me.

Noriko was diagnosed with ALS on August 26, 2019. “My right hand went numb” and I started to have trouble moving it around November 2018.

I thought it was tendinitis at first,” she said. In the beginning, I thought it was tendinitis, so I went to a plastic surgeon and an orthopedic surgeon at the beginning of the year, but it didn’t get better at all. Eventually, it became difficult for me to speak. … In August, during the school summer vacation, I was admitted to the hospital for tests. I was diagnosed with ALS. I was diagnosed with ALS.

When she was told the name of her disease, Noriko said, “You can’t choose your disease.

“When told the name of her disease, Noriko told the doctor, “You can’t choose your disease.

When she was told the name of her disease, Noriko told the doctor, “You can’t choose your disease.

“I had done a lot of research on my own before then. ALS I had done a lot of research on my own and thought there was a possibility of ALS.

ALS (Amyotrophic Lateral Sclerosis) is a disease in which the muscles in the limbs, throat, tongue, etc. gradually lose their strength. It is not a disease of the muscles themselves, but the nerves that control the movement of the muscles are damaged, and as a result, the brain’s orders to move the limbs are no longer transmitted, resulting in weakness and muscle loss.

As a result, the brain is unable to send commands to the body to move its limbs, resulting in weakness and loss of muscle mass. The body’s senses, vision, and hearing are preserved, but as the disease progresses, it becomes difficult to speak, eat, and even breathe. The cause of the disease is unknown, and the symptoms generally affect the entire body within three to five years after the onset of the disease, but it varies greatly from person to person and may progress slowly over a period of ten years or more.

Although I was prepared for it, I was shocked when I was told the name of the disease. I guess that’s true.

Ten years ago, Noriko was baptized and became a Christian. When one of her fellow Christians heard about her illness, she said, “I don’t know why I was so shocked.

One of her fellow Christians who heard about her illness said, “At that time, for some reason, I thought, ‘It’s going to be okay. I didn’t know what was okay, but I knew it would be okay. That’s why I told her, ‘Don’t worry, it’s going to be okay.

When she said that, Noriko said

I thought, “What’s okay?　I thought, “What’s okay?

And then, with a quick glance, she “said it back. The conversation was lively.

“I could do anything if I wanted to” was arrogant.

Noriko was a junior high school teacher.

After graduating from university, she took the exam for teaching in her hometown in Nagano Prefecture and became a teacher. 3 years later, she got married and retired.

My parents were both teachers, so I knew how busy teaching was,” she said. I knew how busy it was to be a teacher because my parents were both teachers, and I didn’t think I could manage a family life.

After a gap of nearly 20 years, she took the exam again. How hard it must have been.

“I arrogantly thought that I could do anything if I wanted to.

Arrogant…?　But I was accepted.

“I was arrogant. I’ve given up such thoughts now. I don’t want to think that I can make it if I work hard, or that I can make it on my own, but I think it’s better to live according to God’s guidance.

Now, with the support of a heavy-duty home-visit care service, helpers from several offices set up a schedule to stabilize Noriko’s life. One of the helpers is a fellow church member. One of the helpers is a fellow church member, who became a certified helper after learning of Noriko’s illness in order to support her life.

I spent time as a “teacher” until the end of the school year.

At school, she was also helped by her students.

After my diagnosis in August, I continued to teach. I couldn’t write on the blackboard because I couldn’t lift my arms. Instead of writing on the board, he had to change the way he taught the class, using an iPad and projecting it on the TV screen, so he had to tell his students about his illness.

She often fell down in the corridors of the school because of the lack of strength in her legs. She said that the students helped her out.

“Some of the kids were a little delinquent, and some of them would say, ‘Die,’ instead of greeting me. But if you talk to them, they are normal kids. The more they need help, the cuter they are.

Graduation Ceremony for All Good Children

I had always wanted to continue teaching, but the time when I had to give up came sooner than I thought. The disease was progressing very fast. Within a year after I found out the name of the disease, I could no longer walk.

In March 2020, at the end of the school year, he left the classroom.

“I felt frustrated. I’ve never been as frustrated as I was.”

On the day of the graduation ceremony, Noriko, dressed in a suit, saw her students off in a wheelchair. With a little distance between her and the Corona countermeasure, Noriko received a lot of support from her students and left the podium.

I can’t move, but I’m too active every day.

I am listening to the sound of the wind on the horse.

If you look at Noriko’s Facebook page, you will see a number of pictures of the Mongolian steppe.

“Riding a horse. The Mongolian horses are small and can run at a trot. Mongolian horses are small and they listen to you very well.

Not only in Mongolia, but also in the Netherlands, Belgium, and Cambodia, where she did homestays in Malaysia and Brunei. What about your children?

“I took them with me. When we went to Malaysia, my daughter was in the sixth grade and my son was in the fourth grade.

Amazing. They are very active.

“When I wanted to do something, I couldn’t stop myself. I couldn’t sit still. I’m essentially a child. That’s why I get along well with junior high school students.

” But now, as you can see, I’m sitting still!

But my friend, the helper, said.

But my friend, who is a helper, said, “Her body is still, but she’s not still at all. If you look at her Facebook page, you can see that.

Noriko’s Facebook page is filled with haiku poems and her daily thoughts.

“In the past, I was a man of many mouths and many hands, sometimes sly and duplicitous, and had a long tongue in class. … …”

But even now, the chattering has not stopped.

“I’ve been doing it for a while. I’m doing it all the time. I don’t sit still at all,” my friend laughs.

Wheelchair rushing toward hydrangea

Cherry Blossoms Dye Fuji and the Sun with Expectation

In her haiku poetry, which she began to write in earnest after her illness, she has many poems about the scenery outside. When the weather is fine, I am sometimes taken outside in a wheelchair.

When her church friends and pastor found out that she was working on a “photo haiku” that combines her haiku with her own photographs, they planned an exhibition, which will be held from October 31 under the title “Tenkoten.

Insect bites, begging to be scratched, being tickled

Even though she is a patient of a serious disease, Noriko is always cheerful around her.

“I want to tell people that there is always a way out of any situation.

And

“If you’re stuck in a corner, there’s always ‘up there’!

She said. To organize the exhibition, a group of fellow Christians formed an executive committee. They designed the flyers and made various preparations.

“I can’t even begin to describe the amount of good will and support I received, and my needs were met. … Too good to be true!

Noriko is an ALS patient who is physically incapacitated and unable to speak aloud, but she is full of chatter that overcomes that. No matter what the situation, she is sure to be okay. She is absolutely fine. That’s how I feel when I look at the “talkative” Noriko.

The photo-haiku exhibition “Tenkoten” will be held from October 31 to November 7 at Shimizugaoka Church in Yokohama.

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