[Reading] To what extent can one assert their own life?

"Banana at this time of night?"
Yasuaki Kano, Muscular Dystrophy, and the Volunteers
Author: Kazufumi Watanabe

It was a very rewarding book to read.

The work was adapted into a film several years ago, and this book is the original source material.

This is a non-fiction work composed of meticulous interviews with Yasuaki Kano, who suffered from progressive muscular dystrophy and required 24-hour care, and the volunteers who supported him.

The fact that the author, Mr. Watanabe, entered the scene as a volunteer himself while conducting his interviews makes this book all the more three-dimensional.

Although the chronology shifts back and forth between chapters, this is not merely a record of a struggle with illness.
It is a biography of a single human being named Yasuaki Kano, and at the same time, it is an ensemble drama of the people surrounding him.

So, who was Mr. Kano?

To describe him in a word, he was a person with a severe physical disability.
However, that word alone is completely insufficient.

He was a person who, even after accepting his illness, continued to thoroughly assert,

"How can I live comfortably?"

He was a person who continued to assert this thoroughly.

He could not breathe without a ventilator.
He could not even turn over in bed by himself.
He had to entrust almost everything in his life to others.

Even so, he kept saying, "I want to live at home," "I want to go out," and "I want to live comfortably."
What burned into my heart in particular was this one phrase.

"I want to live no matter what it takes. I will live."

I was moved by this attitude.

At the same time, I also felt a little afraid.

The moment I superimposed myself onto Mr. Kano, I imagined the possibility that things I had been able to do for granted until now might one day become impossible.

How much do I take my own body for granted as I live?
If I were to lose it, would I still be able to say without hesitation that I want to "live comfortably"?

Mr. Kano sometimes threw harsh words at his volunteers.
He had many demands. There were moments when he seemed selfish.

However, wasn't that just the flip side of his stance of not compromising on the "quality of life"?

He was not just trying to survive.
He was simply trying to live as himself.

This book is not a story about people with disabilities and people without them.

"To what extent am I able to assert my own life?"

I think it is a book that quietly presents that question.