子供の頃、交通事故により、「脳脊髄液減少症」を発症。当時は今よりもっと、知られていない難病だったこともあり、15年間原因不明の日々を過ごす。
医者も、家族も、学校の先生も、友達も、理解者がいない中、
子供の頃からのことだったため、「普通の体」がわからず、周囲の「何ともない、もっと動けるはず」という話を信じて、悪化していく苦しみに耐えながら、無理をしてできるだけ、普通の人のように動かなくてはいけない日々を過ごす。15年後、やっと病名が判明し、二度手術をして今に至る。
時間をかけて、少しずつよくなってきて、今も完全ではありませんが、心からの表現をしたくて、体と相談しながら、比較的体に負担の少ないベリーダンスを踊っています。

ダンスをとても大切に思っています。
年齢も、体型も、表現の仕方も、
その人らしく、その人にしかない魅力が光る踊りは、とても美しいです。

(この病気は、体の苦しみはもちろんのこと、同じようにつらいのが、「理解されない苦しみ」です。私も誤解されるのが嫌で、できるだけ隠して生きてきましたが、少しでもこの病気の方の理解が広まりますように)
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感謝しています。

As a child, I was involved in a traffic accident and developed an unexplainable, incurable disease.
It is known as 'Decreased cerebrospinal fluid flow disease' which was not known at the time.
As it was still an unknown disease, there was no diagnosis for my condition. I couldn't understand why my body acted the way it did and experienced many hardships going about my everyday life.

People around me kept telling me that there's nothing wrong with me and that I should be able to do more than I was doing. I believed in their words and made a conscious effort to meet their expectations.
I tried my best to move like a normal person, whilst enduring the pain and suffering that was intensifying daily.

Fifteen years later, my disease was diagnosed and I subsequently had two surgical operations.
It wasn't perfect, but over time, little by little, my body started to get better.
I chose to start belly dancing because it allowed me to best express myself. Although I didn’t dance perfectly, it was least invasive for my body.

The pain experienced from this disease is not only the physical, but also the mental and emotional pain of those around me having difficulty empathising with my condition, which had no visible symptoms. I felt that the easiest way out of this struggle was to live as hidden and isolated as possible.

However, I started a YouTube channel because I wanted to help people understand this disease as well as my experiences living with it.

I would like to share my videos and experiences with you.

Please subscribe to my channel.
Thank you very much.*
^_^
翻訳ご協力感謝致します。

#脳脊髄液減少症 #Cerebrospinalfluiddecrease#뇌척수액감소증#ベリーダンス#bellydance