Chapter 2 – 15 years old..Battling the sickness

Early symptoms

I don’t know why I’ve been losing weight lately.  Is it because I’ve been skipping meals to work on the piles of homework and reports?  It’s so frustrating.  Although I’m worried but I’m helpless.  There’s no meaning scolding myself now beccause I’m only wasting my energy.  I just hope to gain some weight.  Starting tomorrow, I will put my plans into actions .

The rain fell continously and I was carrying the stupid heavy school bag and briefcase.  On top of that, I was holding an umbrella in my hands.  I hated going to school in this manner. Just as I was mumbling to myself, I fell face first onto the narrow stone pavement about 100m away from home.  My chin was badly hurt and blood poured out when I gently put my hands to it.  I picked up my stuff, which was scattered all over the place, and limped back home.

“Forgotten something again? You’re going to be late if you don’t hurry!” My mother said as she walked out from the room.  ”What happened to you?!”  I didn’t say anything and only cried.  In no time, my mother cleaned my bloodied face and hands with towels but the sand grains had already seeped into my wounds. “We’ll go see a doctor because your injuries are serious.” She helped me to change out of the dripping wet uniform, applied a band-aid to my wound and hurriedly drove me to the hospital.

I wasn’t given any anesthesia and all it took was 2 stitches.  As it was my fault, I withstood the pain clenching my teeth without any cries of pain.  Compared to this, I wanted even more to apologize to Mother who had to take a day’s leave from work.  Using the mirror, I looked at the wound under my chin.  I think it must be my slow reflexes that prevented both hands from cushioning my fall forward.  i’m lucky that my chin is still intact.  If not how am I going to get married with a scar on my face when I’m still single?

My P.E. results:

Yearr 1= B
Year 2= C
Year 3= D
I’m so frustrated!  Am I not working hard enough?  I was planning to make use of the summer holidays to strengthen my body but it’s not going to work out after all.  But I guess I wouldn’t be able to continue it for long too(little voice from my heart: “That’s right!”)
The yellow curtain gave off a brillant light and brought a gentle wind this morning but I was crying.  That’s going to be a balancing test in school today.  ”Why am I the one who is slow and lousy at sports?”  ”Don’t worry. You only need to study hard and find a subject that you like.  Your English grade is not bad right?  You should master it.  It’s an international language and will be useful in future.  As for P.E., its grades doesn’t matter.” My mum told me with eyes looking down. I stopped crying after hearing that and placed my sadness in my heart.

I can’t always cry like this.  My body can’t move as freely anymore.  Am I getting worried because I didn’t spend hours to complete my work?  No.. that’s not right.  It seems that some part of my body is breaking down. I’m so scared!  I thought of all the things I want to do.  I want to exercise: to run until I can’t run anymore. I want to learn and write beautiful words.

“Namida no Toka-ta (A tear’s solo)” is a fantastic song and I like it a lot.  As I ate my meal while listening to this music, I felt that the food tasted better!

Words on my sister: Up till now, I do not like my younger sister’s personality.  But today I finally felt that she’s actually very kind-hearted.  Why I said that was because while walking to school this morning, younger brother ditched me and ran off ahead but she accompanied me.  She even helped to carry my bag as we crossed the bridge, reminding me “Hold on to the railings before you climb!”

The hot summer brought along a breeze of coolness.  After washing up at dinner, I was preparing to go upstairs.  Mum said to me, “Aya,come sit here.” Looking at her serious expression, I was nervous, thought I had done something wrong and about to get a scolding.  ”I’ve noticed that your upper body has been slanting to one side and sways from side to side when walking.  Your body looks ready to fall anytime, have you noticed it yourself?  I’m worried about you.  Let’s go to the hospital for a checkup.”  I was silent for a while before asking, “Which hospital?” “I will find a one which is willing to do a detailed check.  Don’t worry, I will take care of it.”  I couldn’t control my tears and they eventually rolled down.  I wanted to say “Thank you and sorry for making you worried, Mum.” but my throat was choked with tears and I couldn’t speak.  Is it because of my slow reflexes? Or burning midnight oil thru the nights?Or not keeping to mealtimes?  Even if I had answered my own questions, I would still have to go to the hospital.  It seems that my body indeed has a problem somewhere.  I cried again at the thought of this until my eyes started to hurt.

MY: This is just part 1 of chapter 2.  I will edit this post again later for the other parts.

Chapter 1 – My Family

Mary died

It’s my birthday today.  I have really grown up.  I want to thank Mum and Dad.  I will work harder to get good grades in school and to get fitter. I won’t let my mind wander anymore. My youth has just began and I’m going to cherish this period so that I won’t leave any hatred nor regrets.

I will be going camping the day after tomorrow.  If I do not work hard now, I won’t be able to have fun in peace.  Aya, go go!!!

Mary had been bitten on the head by Tiger-my neighbour’s big dog and died.  Despite it’s small size, it liked to get close to Tiger and it was wagging its tail happily as it sprinted to Tiger.  Although I had shouted at the top of my voice: “Mary!!! NO! Come back!!”, it was no use in the end.  Mary was dead before it could give out any noise so it must have felt frustrated?  It was just born not too long ago.  How would it know that it would die so young? Mary, I hope that you will be happy in the other world!

The new house is ready!  The big room at the east wing on the seond level belongs to me and my younger sister.  It feels different when you look out to the scenery through the windows from the clean white ceiling and brown walls.  I’m definitely happy to have my own room but the looming space gives off a sense of lonelinese too.  Who knows? I might even lose sleep tonight.

I’m starting afresh with new feelings.

1. My outfit for today is T-shirt with pants(for ease of movement).

2. My daily homework would be: Watering the plants in the yard, weeding, checking the leaves of the oone and only tomato plant in the household for worms and making sure that there are no cockroaches on the chrysanthemum leaves. If I do find any, I would need to get rid of them.

3. Can’t be sluggish in my homework.

4. Other than that, I would need to record everything that has happened/been done into my diary.

I must do all of the above everyday!

My Family

My father – 41-years old. He gets worked up over little things but he has a gentle personality actually.

My mother – 40 years old. I respect her a lot but her ability to know what I’m thinking is scary.

Myself – 14 years old. A growing teenager in adolescence which is a problematic period.  I’m simply a cry-baby who is emotional, innocent and with an ever-changing mood.

My younger sister – 12 years old.  She is competitve in every aspect be it studies or personality.  But it seems that she is more tamed now.

My first younger brother – Eleven years old.  He likes to be clean.  Sometimes I have to act like an elder brother to him.  He’s like a parent to Little Blackie(our dog).

My youngest brother – 10 years old.  He is very imaginative but tends to be a little slip-shod when doing things.  My youngest sister – 2 years old.  She has the curls of my mother and looks like my father especially the eyes(the angle is like the hour and minute hands pointing at 8.20 on the clock).  She’s very cute.

MY:  Taken a few days to write this cos I had previously written a draft but it was gone!! Anyway, more will be coming up now!!

Words by MingZhu(The Chinese Translator)

Thanks to the Internet and rampant video piracy industry, the showing of One Litre of Tears swiftly reached millions of people in Mandarin-speaking countries right after it ended in Japan.  Long before this book was published, many people would have had accompanied Aya on her life journey of ups and downs.  The sentence “I’m not special. I’m just a sick young girl.” would have been common in any other Japanese drama serial but imagine if you were the patient of this illness.  How would you have faced life?  ”Is this world a cemetery? Are we still living?” is a common complain but it has become the youngsters’ favourite phrase.  We are of course alive.  ”But why do I exist?”  This was also a question posed by Aya to her mother when she was in the final stage of the illness.  It wasn’t wasy to answer.  Life, death, eating and sleeping are part of our lives but no one will admit that we are all trying to adapt to nature’s way of life. If that’s the case, why do we exist?  No matter which profession you are in, money matters always come first.  You need money to extend your days on earth.  Money might not be everything but you certainly can’t live without it.  It’s regrettable that money can’t cure illness.  No one likes this demon and no one can argue it’s fairness in determining its victims.  No matter who you are, be it a millionaire or beggar, you are equal in its eyes.

There’s a phrase in a poem “A grain of sand for onne world, a flower for one heaven”.  I think that the purpose of our existence is in that one moment.  If you agree with me, pleaase cherish what you have now.  Just like what Aya had done too.

MW: The last sentence is kinda hard to describe.  Perhaps my grasp of English isn’t good enough for such translations.

Foreword by Founder of ZhongHua Spinocerebellar Ataxia Society

I got to know that there was a best-seller book in Japan that had touched many hearts.  The author, Kitou Aya, hadcontracted an incurable illness – Spinocerebellar ataxia.  From the surfacing of symptoms to her loss of motor skills in eight years, she had spent a considerable amount of time of her life writing this diary.  When the book was filmed into a movie and drama, there was a soaring viewership rate in Japan. When Zhonghua Spinocerebellar Ataxia Society entered it’s fifth anniversary, we were delighted to know that the book was going to be published in Chinese.

In the past, this illness was hardly known.  The patients have always been hidden in unknown corners of our society without much understanding of the illness.  Just like how when Aya experienced the symptoms, there were many obstacles.  The most painful suffering of this illness was that while your motor skills are progressively detoriorating, your mental capability would be left intact, meaning you would still be able to think like any other normal person.  Many cases occured from heritage issues, passing from one generation to another.  Family members were often unable to cope with the long-term caring of such patients and welfare is never enough to ensure that they were well looked after.  Many had lost their lives in poverty.  This is our biggest challenge.

Aya was in the peak of her youth with high hopes of her future but she saw how it all trickled away with time.  Isn’t it cruel?  Reading the book will bring you sadness, moving moments, warmth and exclamations. But this memoir is presented by Aya using her life.  With family members living in fear and helplessness, they led a life walking in the less-travelled path with blood and tears.  7 out of 9 members in my family had contracted this illness too and I am the only one who has managed to excape, living to an age of 40.  I am still fulfilling my responsibility even though I founded the society five years ago in pain and suffering.  The pain had been lessened by the 400 patient friends but when I saw this book, painful memories in my heart re-surfaced again.  It is hard to describe the tears in my wrenching heart for Aya’s and my 6 brothers’ and sisters’ relative young age at the onset of this illness.

I hope that with the Chinese translation of this book, through the encouragements given to Aya by her family and doctors, we can find a way to fight this illness and not to give up life at the same time before new medication is available.  We should harbour hopes while doing our best at rehabilitation.  I hope that all of us can understand that this illness is a problem to human beings from all over the world.  The medical industry is doing its best to seek cures.  In this book, we will see Aya’s tolerance and love even though it is an amazing feat that she had the thinking of “Even if my strength is so little, I still wish to be of use to people”.

I wish that all readers would not solely be touched by the book but also to share it with others to let everyone understand the quality of life and that there is love in this world.  Let us help these patients and their family by giving them more warmth.  What can we do while waiting for the cure?  Let there be no more tragedy.  I hope everyone will abide the old saying of “Giving is better than taking” and realise that happiness is around you.  I sincerely thank all the contributors of this book.

My Words(MW): It seems that this person has the illness too but she has managed to live till 40 years old.  I have tried to follow her words as closely as possible.  Not doing an exact word for word translation though.

My words

I got to know of One Litre of Tears through its drama serial.  I practically cried in each episode.  However, it wasn’t always tears of sadness.  I was touched by many scenes showing how Aya’s family supported her and her outlook towards life as she experienced the ups and downs of her life brought about by the illness.

To give you a brief overview of wha this is all about, One Litre of Tears was originally a diary written by a Japanese girl,Kitou Aya, who contracted a terminal illness-Spinocerebellar Ataxia(degeneration) at a young age of 15 years old.  This illness caused her to lose her motor and speech skills progressively but her mental health would remain intact, meaning she could still think like any other person.  It eventually led her to being bedridden.  She continued her writings till 20 years old where she could no longer hold a pen.  There is still no cure for this illness although new medications have been able to slow down its progress in patients.

I started out to search for a English version of this diary but I realised there was none.  Nevertheless, there were several blogs doing the translation too.  However, none was completed.  in the end I managed to grab a copy of the Chinese version from the library and finished reading it within 2 days.  Aside from the unfamilar medical terms, it was a pretty easy book to read even though it was written in Chinese Traditional Writing. The book had even more details of Aya’s feelings in her life journey.  Her frustrations and hope for the future were clearly spelt out.  This wasn’t easy to see from the drama.  I tried to register onelitreoftears.wordpress but it had been taken up by someone else attempting to translate too.  I had no choice but to settle for alitreoftears.

I’m translating this in the hope that more people can read about Aya’s story and be motivated.  It is an inspiring book.  Bear in mind that this happened in 1970s-1980s when people were less acceptable towards the physically disabled. I hope you guys will understand that I’m doing this through the Chinese version so there will be some missing elements from the original Jap version.   I won’t exactly translate word for word since writing in Chinese and English can be very different but I’ll do my best to capture what Aya wanted to present.  I will have a short character introduction too so that there’s less confusion.  There might be certain words/names I might have difficulty with too so please bear with me.

I hope this has gotten you interested so in case you wanna find out more?  Read on…….