Rie

Born in 1966. After being diagnosed with Amyotrophic Lateral Sclerosis (ALS) in 2019, she began activities to raise awareness of ALS and support communication by those with incurable diseases. She is on the editorial committee of the Japan Amyotrophic Lateral Sclerosis Association, and the organizer of Icotto, which holds get-togethers for people with incurable diseases and supports improvements to the quality of life of those receiving nursing care. She publishes a series of interviews with people involved with incurable diseases as notes on her website, under the title “NOW”.

My disease is called Amyotrophic Lateral Sclerosis (ALS), and is an incurable disease. Since I received a definitive diagnosis two years ago, my life has changed completely: it is an ongoing confrontation with a difficult enemy, ALS, which does not yet have a cure.

ALS is a degenerative disease of the nervous system in charge of moving the body (motor neurons). It is a terrible disease: as it progresses, movement becomes gradually more and more difficult, until you cannot even breathe by yourself. There are said to be around 10,000 people in Japan with ALS, but I never thought that I would become one of those 10,000 people… I experienced a mixture of different emotions, including shock, confusion, anxiety, and dread, and immediately after receiving the definitive diagnosis, I could not even get these emotions out. I felt as though my mind had frozen. I think that I was unable to accept my “now”, and was doing my best to escape from reality.

I spent my days without crying or laughing, as though a gaping hole had opened in my heart. Even so, I was supported by my family and those around me, and I was able to learn about many things which had no relation to my previous life, such as that there are many people who fight against incurable diseases without giving in, and people who are passionate about supporting us. I also met many new people, and the fact that there are people who are striving so earnestly to live, valuing each day, began to touch me deeply.

I do not want my life to end in defeat. I want to laugh as long as I live.

It sounds simple, but after I changed my perspective, my life battling this disease, which had felt uncomfortable and as though I were in a completely different world, became full of completely new experiences, with many intriguing aspects to it. The switch in my heart suddenly turned back on, and from that time, I have been sincere with myself and attempted to do various challenging things which I want to do or which interest me.

I had worked in advertising production for many years, and so I joined the steering committee of the Chiba branch of the Japan Amyotrophic Lateral Sclerosis Association and the editorial committee at the Association’s headquarters, hoping to make use of this experience. I wanted to change the negative image of ALS and other incurable diseases, letting many people know instead about the existence of people who are leading positive and powerful lives. I then felt a need for places where people with this disease would feel free to get together, exchange information, and enjoy talking with each other, so I started get-togethers for us. These Icotto Café get-togethers, which are now mainly online due to the COVID-19 pandemic, have become widely known thanks to social media, the cooperation of the Japan Amyotrophic Lateral Sclerosis Association, and word of mouth, and people now participate from around the country. It is normal to want connections with others even if we become disabled. Encounters with many people supply a lot of energy for living and provide emotional support. I hope that even more people will be proactive about using these opportunities to get together, and will find ways to avoid becoming isolated.

It is not my own individual strength that allows me to continue with these activities. It is something that I can do precisely because I have companions who agree with what I am doing and collaborate. Their presence is essential. Even if we contract an incurable disease and become disabled, encounters and connections with people are extremely important, and we need to make a move in order to have such encounters. I have been able to learn this through having an incurable disease.

As for my future goals, I am currently unilaterally receiving support, so I would like to make a further effort to become someone who is both supported and supports others. People make up for the things that I cannot do; but there must also be ways in which I could help. I would like to be able to have such relationships, in which we support one another. I would also like to continue my small activities, little by little and without giving up, in order to create a society in which it is taken for granted that relationships between people with diseases, people with disabilities, and healthy people are built on mutual respect for each other’s individuality and strengths, and on supporting one another.