ALS Assisted Dying Disability Japan

‘“Understanding” makes my heart lighter’, the late Yuri Hayashi, ALS patient on why she writes a blog

"The reason I started blogging and Twitter was the story of a patient I heard from a helper. The woman, who is still young, has been fighting illness since she was born with cerebral palsy. She seems to have difficulty in pronouncing words and can express her feelings only occasionally."

By Barrier Free Japan

August 4 2020

It was reported on Thursday 24 July 2020, that two doctors were arrested by the Kyoto Prefectural Police for allegedly murdering a woman who had amyotrophic lateral sclerosis, or ALS, at the patient’s request.

The deceased, a woman aged 51 named Yuri Hayashi, ran a blog and a Twitter account.

In a blog post on June 24 2018, titled ‘”Understanding” makes my heart lighter‘, Hayashi wrote again about how she was “[n]ot accepting the illness called ALS” and remarks that:

“I’m not even interested in news about treatments or new medicines because they can’t make it in my lifetime. Of course, I never had contact with other patients.”

Hayashi also remarks on how she came to start blogging and tweeting:

“The reason I started blogging and Twitter was the story of a patient I heard from a helper. The woman, who is still young, has been fighting illness since she was born with cerebral palsy. She seems to have difficulty in pronouncing words and can express her feelings only occasionally.”

Not accepting the illness called ALS, I’ve turned my back on it all the time. I have lived without the word ALS. I’m not even interested in news about treatments or new medicines because they can’t make it in my lifetime. Of course, I never had contact with other patients.

The reason I started blogging and Twitter was the story of a patient I heard from a helper. The woman, who is still young, has been fighting illness since she was born with cerebral palsy. She seems to have difficulty in pronouncing words and can express her feelings only occasionally. I can’t speak, but I can communicate using a dial. She doesn’t even have that kind of tool. The helper said, “No matter how long I keep various thoughts in my heart…”.

After hearing the story, I was wondering about her. I know how inconvenient and frustrating it is to be unable to express an intention. Then every week when the helper came, I started listening to her. Throughout the helper, I complained “I have a helper” and everyday complained and cried with happiness, “I understand! I thought it was so happy that somebody could understand me so that I could cry.

At that time, I was giving up hope for euthanasia, and if I didn’t die, wouldn’t it be useful for someone? I started to think. I wish I could be a spokesperson for people who don’t have the means of communication, like she has the means of communication, and complain and make someone happy somewhere “I understand!” I thought I should be able to have a means of communication.

By the time I started SNS, I still couldn’t give up my hope and wanted to create a path for patients who want to be euthanized like myself. I can only spit out poison now.

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