Author: Aya Kito
# of Pages: 270 (ebook)
Genre: Nonfiction, memoir, biography
Rating: ★★★★☆
Synopsis: Aya Kitō was diagnosed with a disease called spinocerebellar degeneration when she was 15 years old. The disease causes the person to lose control over their body, but because the person can retain all mental ability the disease acts as a prison. So in the end she cannot eat, walk or talk.Aya keeps a diary of not only what she does but how she feels and the hardships she must endure. Initially, the diary's purpose was for Kitō to chronicle impressions she had about how the disease was affecting her daily life. As the disease progressed, however, the diary became Kitō's outlet for describing the intense personal struggles she underwent in coping, adapting, and ultimately trying to survive her disease. As she notes in one entry, "I write because writing is evidence that I am still alive."
Review: It is always difficult to judge a book by its translation.
I read this book because I watched the J-drama of Anya’s story and wanted to know how accurate its portrayal of her disease is.
(I’m not marking any of this as a spoiler since it’s nonfiction.)
The start of the book is her diary, which reflected similar sentiment I saw in the J-drama version of Aya. However, near the end of the book when the doctor is giving her (interestingly the doctor is male in the drama even though she is female in real life) version of Aya’s life, she recalls how the school administration insisted Aya go to a disabled school. This is also in the drama; however, unlike in the doctor’s retelling where she states that Aya’s peers were “fighting against the move,” many students were portrayed in the drama as reluctantly agreeing that Aya was an inconvenience in school and should be transferred. The way the creators of the drama recreated the events that led up to Aya’s transfer strongly indicate that the transfer was the obvious choice to benefit all parties involved. What I liked about the doctor’s perspective was how she casts a different light on the situation; instead of seeing Aya as an inconvenience, she discusses how Aya’s condition brings out the caring nature in others and how exposure to her serious attitude she developed during the fight for her life could have helped her peers grow and improve in character.
I wasn’t surprised to find the romantic part of the drama to be extremely exaggerated. However, I was surprised by the doctor’s memory of Aya asking if she could get married and of a period of time when a medical student around her age would visit her, hinting toward the possibility of romance. Although it is not on the scale of what was depicted in the drama, it is nice to know it is not completely made up.
Overall, this publication of Aya's diary and her doctor's and mother's account of Aya's life with her disease were exactly what I expected. It is a very quick read, but it is amazing to hear from the perspective a girl who had such a difficult disease to live with.
