照顧與被照顧

我叫阿亨,我是一個中五的學生

My name is Ah Heng, and I am a Form Five student.

我做天生玩一個叫脊髓肌肉萎縮症

I was born with a condition called spinal muscular atrophy.

這個突然令我動作很不方便

This suddenly made it very inconvenient for me to move.

為了這麼好的照顧,全靠我姨媽和我傭人姐姐

The excellent care is all thanks to my aunt and my maid sister.

阿亨也不輕,阿亨是70磅,六呎多高

Ah Heng is not light either, he weighs 70 pounds and is over six feet tall.

我們兩個人,包括她媽媽幫忙抱,真的很辛苦

It's really tough for the two of us, including her mom helping to hold.

媽媽、爹地可以上班,我和姨媽一起照顧她

Mom and Dad can go to work, and I will take care of her with Auntie.

姨媽也幫我幫她抱

Aunt also helped me hold her.

我們合作,一起照顧她

Let's work together to take care of her.

還有Henry,我也覺得很辛苦,但是還可以

Also, Henry, I also find it very challenging, but it's manageable.

我們跟得上他很貼近,我們完全不會假手於人

We are very close to him, and we will not outsource it to others at all.

對於阿亨來照顧,我們父母整個家人都會盡心盡力照顧他

Regarding taking care of Ah Heng, our parents and the whole family will do their utmost to take care of him.

我小時候也是一個很悲觀的人

I was also a very pessimistic person when I was a child.

因為我不知道我這個身體能夠做到什麼

Because I don't know what this body is capable of.

很多的限制

Many restrictions.

我不知道我未來能否讀書,能否工作

I don't know if I can study or work in the future.

在我成長的時候,我不斷思索自己人生有什麼意義

As I was growing up, I constantly pondered what the meaning of my life was.

我發現原來自己做到的事情仍然有很多

I found that there are still many things I can accomplish.

因為在病裡面我學到很多東西

Because I learned a lot in my illness.

例如珍惜身邊的人,如何鼓勵其他人

For example, cherish the people around you and how to encourage others.

這些東西可能很多正常的人都沒有了

These things may be gone for many normal people.

例如珍惜身邊的人,如何鼓勵其他人都沒有了

For example, cherishing the people around you, how to encourage others when there is nothing left.

這些東西可能很多正常的人都沒有了

Many normal people might not have these things anymore.

阿亨出生的時候是一個很正常的孩子

A Heng was a very normal child when he was born.

他很可愛

He is very cute.

到九個月之後

After nine months.

到九個月之後,我的孩子為何會這樣

Why does my child behave like this after nine months?

我弟弟還沒有像姐姐那樣懂得伸展或學棋

My younger brother hasn't yet learned to stretch or play chess like his sister.

我再帶回給醫生看

I'll bring it back to the doctor to take a look.

醫生就告訴我阿亨有肌肉萎縮

The doctor told me that Ah Heng has muscle atrophy.

我初聽的時候都很驚訝

I was very surprised when I first heard it.

但我始終覺得可能每一個病都有一個救治的方法

But I always feel that there may be a way to treat every illness.

我也不知道這個病是不可以

I also don't know if this illness is manageable.

醫治的

Healing

醫生當時告訴我阿亨要接受一個現實

The doctor told me at that time that Ah Heng needed to accept a reality.

他是越大越差的

The bigger he gets, the worse he becomes.

還有他的肌肉是支撐不了他的身體

His muscles can't support his body.

最主要就是肺的機能退步得很快

The main issue is that the lung function declines rapidly.

到時候他會用呼吸機或者是有些感染

At that time, he will be using a ventilator or may have some infections.

那就…

Then...

成長不了

Cannot grow/develop.

最主要就是這樣告訴我

The main point is to tell me like this.

我當時說我幫我醫生說

I said at the time that I would help my doctor.

我會盡我的能力去醫治我的兒子

I will do my best to heal my son.

19年之間我都不停幫他找醫生

For 19 years, I kept helping him find doctors.

每年都要回去檢查他的肌肉

He has to go back every year to check his muscles.

以前是萎縮的

It used to be atrophied.

現在就可以有生長

Growth can happen now.

我不至於是差

I'm not that bad.

我家人很希望我能夠康復

My family hopes that I can recover.

雖然我知道這件事是不可能的

Although I know this matter is impossible.

但是我仍然去接受治療

But I am still going to receive treatment.

希望他們不要擔心我的身體

I hope they don't worry about my health.

唐明亨是有這個脊髓的肌肉萎縮症來的

Tang Mingheng has muscular atrophy due to this spinal cord condition.

是一種先天症的疾病

It is a disease of congenital disorder.

他是長期病患者

He is a long-term patient.

但是他的情況都算穩定

But his condition is relatively stable.

所以我們只需要每年定期幫他檢查一次

So we only need to have him checked once a year regularly.

去病房那裡

Go to the ward there.

在晚上會幫他做一個簡單的睡眠檢查

I will help him do a simple sleep check in the evening.

也會定時幫他做一個心電圖

I will also regularly help him do an electrocardiogram.

也會做一些另外的額外檢查

Will also perform some additional checks.

譬如會包括會做一個肺功能的檢查

For example, it will include a lung function test.

好吧,整家人都幫你

Alright, the whole family is helping you.

整家人都很開心,很好

The whole family is very happy, it's great.

中醫的角度

The perspective of Traditional Chinese Medicine.

一個是要刺激他的肌肉

One is to stimulate his muscles.

一個是刺激他的肌節

One is to stimulate his muscle segments.

他本身是有的

He has it himself.

要讓他有血液和一些流通的營養

To ensure he has blood and some circulating nutrients.

要幫助營養加強

To help strengthen nutrition.

加強讓他的肌肉慢慢慢慢改善

Strengthen to gradually improve his muscles.

現在

now

一次比一次他的手指動得好一點

His fingers move a little better each time.

還有夠力一點

Still a bit more strength.

以前是完全動不了

In the past, I was completely unable to move.

現在就開始動三隻手指

Now start moving three fingers.

現在叫他動一下

Now tell him to move a bit.

治療了十年

Treated for ten years.

現在叫做有好一點好一點

Now it's called a little better.

一分力一分功

You get what you put in.

真的

Really.

每個星期都是做一次、兩次

Every week, it's done once or twice.

我有時候要長期的治療

I sometimes need long-term treatment.

媽亨因為她的腳

Mom Heng because of her foot.

尤其是膝蓋後面的關節比較緊

Especially the joints behind the knees are tighter.

我們為了她在家中方便照顧一點

We made it more convenient for her to take care of things at home.

所以我們都會跟她一個星期兩次

So we will see her twice a week.

被動拉筋的動作做一天一天的動作

The action of passive stretching is performed day by day.

我們做的一天一天的動作

The actions we take day by day.

運動

Exercise

這樣位置可以嗎

Is this position okay?

可以 沒問題

Sure, no problem.

中間膝蓋兩邊都盡量幫她夾起來

Try to squeeze both sides of her knees together as much as possible.

就可以幫她拉外面這些位置

You can help her pull these positions outside.

想幫她拉直膝蓋

I want to help her straighten her knee.

我很喜歡這間學校

I really like this school.

因為這間學校的老師很有愛心

Because the teachers at this school are very caring.

特別他們有職業治療師

Especially since they have occupational therapists.

有物理治療師

There is a physical therapist.

他們幫亨很精心去考慮一下

They carefully considered it for Heng.

每天需要什麼東西可以配套

What items are needed every day for complementary purposes?

就像亨一樣

Just like Heng.

因為她在家中要跟她過床、上輪椅

Because she has to share a bed and use a wheelchair at home.

其實都挺困難的

It's actually quite difficult.

於是我們就評估了她在家中的環境下

So we assessed her environment at home.

就建議她在家中買一些吊機

It is suggested that she buy some hoists at home.

可以透過這個吊機

It can be done through this crane.

去她家中協助

Go to her house to assist.

幫她從輪椅上床

Help her get from the wheelchair to the bed.

還有可以減輕她在家中

There are other things that can lighten her burden at home.

幫她搬頭時出現一些危機

There were some crises when helping her move.

另外我們也會

In addition, we will also...

希望盡量提高亨的獨立能力

Hope to improve Heng's independence as much as possible.

就像這張電動椅一樣

Just like this electric chair.

亨可以透過一些改裝

Heng can be modified through some modifications.

可以很獨立地駕駛這部電動椅

Can independently drive this electric wheelchair.

例如我們會將這個開關掣放在上面

For example, we will place this switch on top.

變成亨可以手指向上踢一下

Turn into a hen that can kick upwards with its finger.

就可以開關和轉動控制的模式

You can control the mode by switching and rotating.

很幸運身邊有很多人幫助我照顧我

I am very lucky to have many people around me who help take care of me.

令我能夠從這個病中來到現在

Allow me to come to the present from this illness.

也能夠得到很好的生活

Can also lead to a good life.

希望你保守亨

I hope you keep it safe.

還有告訴亨身邊的家人朋友

Also tell the family and friends around Heng.

給他們信心去支持亨

Give them confidence to support Heng.

去跪下做健身

Go kneel down and do exercise.

用選命頭

Use the life selection head.

亨有這個信仰之後

After having this belief, Heng...

就覺得很開心

Just feeling very happy.

他很有內心的開心出來

He is very inwardly happy.

他希望可以幫到其他身邊的人

He hopes to be able to help the people around him.

導人向善

Guiding people towards goodness.

以前他只是顧著自己而已

In the past, he only cared about himself.

他只是顧著自己而已

He is just thinking of himself.

不喜歡和別人溝通

Not liking to communicate with others.

所以改變也挺大的

So the changes are quite significant.

和花寶

Hehua Bao

花寶和花寶

Flower treasure and flower treasure.

我覺得很開心

I feel very happy.

他真的很好

He is really good.

花寶和花寶

Flower Treasure and Flower Treasure

他煮豆腐

He cooks tofu.

他懂得哄我

He knows how to coax me.

賣食給我

Sell food to me.

如果我不開心

If I am unhappy

他真的懂得說笑了

He really knows how to make jokes.

我們都是關心傭人姐姐

We all care about the maid sister.

不是一個傭人與主徒的關係

It's not a relationship between a servant and a master.

是一個家人或者朋友的關係

It is a relationship between family or friends.

這個就吹出來

This can be blown out.

吸進去

Inhale.

讓他的肺

Let his lungs.

主要是對肺功能好一點

Mainly is better for lung function.

和肺做運動

Exercising the lungs.

嘩 今天這麼厲害

Wow, it's so impressive today!

每天時間許可

Time permitting every day.

我們每天都要早晚幫阿亨做空肺練習

We have to help Ah Heng with his lung exercises every morning and evening.

因為他一定要做

Because he must do it.

因為他的肺特別差

Because his lungs are particularly bad.

你忍住氣

You hold back your anger.

我來

I am coming.

忍住氣

Hold your temper.

忍到不能忍住才放

Only let it go when you can't hold on any longer.

對他的身體

Regarding his body.

這個病就不是那麼擔心

This illness is not that concerning.

眼前除了他不要走不要動

"Don't leave, don't move, except for him in front of you."

也看不到什麼不好的東西

Can't see anything bad either.

我看好阿亨

I have high hopes for Ah Heng.

阿亨真的很聰明

Ah Heng is really smart.

他真的很聰明

He is really very smart.

而且他做事也很認真

Moreover, he is very serious about his work.

我今天來中心也讀了很多年

I have been coming to the center and studying for many years.

我從八歲開始讀

I started reading when I was eight years old.

現在十九歲了

I'm nineteen years old now.

我看到原來我的群體裡面

I see that in my group.

很多都是有不同的困難

Many have different difficulties.

但他們都跟我一起

But they are all with me.

我就開始接受自己的情況

I began to accept my situation.

然後去融入一個正常的群體

Then integrate into a normal group.

阿亨是一個為人著想的學生

Ah Heng is a student who thinks of others.

他是一個很好的觀察者

He is a very good observer.

一個支援者

A supporter.

他會看到同學有需要的時候

He will see when his classmates are in need.

他會從旁幫忙

He will help from the side.

讓同學發揮自己的能力

Allow students to showcase their abilities.

譬如在今年裡面

For example, this year.

他有一個叫做校園電台的活動

He has an activity called campus radio.

其實他那個帶領的能力

In fact, his leadership ability.

討論的能力其實是一個不錯的

The ability to discuss is actually quite good.

我們希望能夠學懂

We hope to be able to understand.

如何去處理自己的情緒

How to deal with your own emotions.

還有去處理壓力

There are still ways to manage stress.

我們希望

We hope.

不是 丟下去

No, throw it away.

OK

OK

期望的就是我們希望那裡

What we hope for is that we wish to be there.

電台體驗到我們整群人

The radio station experienced all of us together.

是團結

It is unity.

而且是互相幫助

And it is mutually beneficial.

錄音真的很浪費時間

Recording really wastes a lot of time.

例如我找我試一次NG

For example, I will try it once and it didn't work.

OK

OK

再剪一點點

Cut a little bit more.

最後我們希望

In the end, we hope.

也不單止是

Not only is it...

不單止

Not only

OK啦 快點叫他

Alright, hurry up and call him.

好…

Okay...

好 開心了

I'm so happy!

好開心

So happy.

不能馬上用山少女bers

Cannot use mountain girl bers immediately.

可以這樣坐在家裡

You can sit at home like this.

我可以駕駛嗎

Can I drive?

可以

Sure.

我可以駕駛嗎

Can I drive?

駕駛

Driving

我可以坐在你身上

I can sit on you.

大家一起坐,好

Everyone sit together, okay?

可以坐在其他地方

You can sit in other places.

我可以坐在你的 так衣上

I can sit on your coat.

我可以坐在你身上

I can sit on you.

約了兩個朋友 練練

Met up with two friends to practice.

平時都會出街 吃飯

Usually go out to eat.

你記不記得上次大澳豐豪看電影

Do you remember the last time we watched a movie at Tai O?

好像你留在地鐵站

It seems like you stayed at the subway station.

有什麼感覺

What does it feel like?

一開門

As soon as the door opened

一開車門

As soon as the car door is opened.

你就馬上飛上去

You just fly up there immediately.

我就在這個地鐵站

I am at this subway station.

上地鐵當然要衝

Of course you have to rush to catch the subway.

不衝怎麼行

How can it work without being aggressive?

有什麼感受

What feelings do you have?

沒有

None.

沒什麼感受的

Not much feelings about it.

無奈

Helplessness

快點玩

Hurry up and play.

玩完

Finished playing.

我們現在好像

It seems like we are now.

跟著王小姐去玩

Go play with Miss Wang.

走吧 王小姐

Let's go, Miss Wang.

天太淡了

The sky is too light.

今天是我們一年一度的

Today is our annual event.

畢業禮和頒獎禮的大日子

The big day of graduation ceremony and award ceremony.

謝謝

Thank you.

接下來來頒放的獎牌

The medals to be awarded next.

就是18組的譚榮鏗同學

It is the student Tan Rongkeng from Class 18.

拿了一個全校的最佳學生獎

Won the Best Student Award of the entire school.

我感覺到非常之開心

I feel very happy.

因為我能夠讓別人都知道

Because I can let others know.

阿亨在学校已经有11年了

Ah Heng has been at school for 11 years.

这几年慢慢看到他那个领导能力是出来的

In recent years, I've gradually seen his leadership abilities emerging.

就譬如说他在公众面前

For example, he is in front of the public.

他是不会再害怕的

He will no longer be afraid.

说话是很有自信

Speaking is very confident.

就是他前年做这个国际成就计划

It was two years ago when he started this international achievement program.

他有一间公司的行政总裁

He is the CEO of a company.

他帮他一间公司去售卖一些物品

He helped his company sell some items.

他也是很主动介绍他一间公司的情况

He also took the initiative to introduce the situation of his company.

这一点我觉得就是和他自己

I think this is about him himself.

一向很肯去扩阔自己的社交圈子

Always willing to expand one's social circle.

和扩阔自己的事业都是有关系的

It is related to expanding one's career.

看到他和楼下一些同组的同学

Seeing him with some classmates from the same group downstairs.

去沟通或者楼上面给的邀请

Go communicate or the invitation given upstairs.

他的意见其实他刚刚在一个夹层里

His opinion actually just got stuck in a layer.

不过他也很尽力地去协调

However, he also made great efforts to coordinate.

他懂得尊重上下两个方面

He understands how to respect both levels above and below.

不同的意见去做一个调色

Use different opinions to create a color palette.

我就是一个很喜欢思考的人

I am someone who really enjoys thinking.

我很喜欢用历史做一个思考的索引

I really enjoy using history as a reference for thinking.

不断地去思考

Continuously think.

我们历史的转变和我们的生活有什么关系

What is the relationship between the changes in our history and our lives?

我们经常在说香港是一个中西文化共融

We often say that Hong Kong is a blend of Chinese and Western cultures.

华洋杂处的地方

A place where different cultures mix.

所以我们今天想和大家介绍

So today we want to introduce to everyone.

十九世纪末二十世纪初的时候

At the end of the 19th century and the beginning of the 20th century.

香港的欧洲人社群和华人社群之间的文化差异

Cultural differences between the European community and the Chinese community in Hong Kong.

就在这里与大家 шир展

Right here will be a broad discussion with everyone.

希望大家暂时在这些事情进行旋转

I hope everyone can temporarily revolve around these matters.

我想说我自己倒是有更多的理论

I want to say that I actually have more theories myself.

其实我自己都经常在生活上

In fact, I often encounter this in my life.

选择一些顺便的比较有意见

Choose some casual comparisons with notable opinions.

我自己也会旋转

I can spin myself too.

大家也会想到我都已经选好了

Everyone will also think that I have already made my choice.

我们都可能有一个一个职业

We may all have a career.

但其实我自己的生意还是很抽搐

But in fact, my own business is still very twitchy.

但是我自己的生意是是自己的

But my own business is my own.

他们很温馨的

They are very warm.

所以我开始后来过这些时候

So I started to go through these times later.

我开始有了自己的生活

I have started to have my own life.

最后我发现自己好像也有自己的生活

In the end, I found that I also seem to have my own life.

我们的生活有很多不同之处

There are many differences in our lives.

所以才参加这些单位

That's why I participated in these units.

這次是一個中西區的歷史考察

This time it is a historical investigation of the Central and Western District.

其實我在香港住了很多年

Actually, I have lived in Hong Kong for many years.

但我都不知道原來香港有這麼多好地方

But I didn't know that Hong Kong had so many great places.

又有這麼多歷史

There is so much history again.

而且是這麼漂亮的

And it's so beautiful.

我這組的同學是很特別的

My classmates in this group are very special.

有兩個是相近的人

There are two people who are similar.

譚詠鏗是其中的一位

Tam Yung-hong is one of them.

其實她用眼去觀察

In fact, she observes with her eyes.

用耳朵去聽

Listen with your ears.

還有她剛才你見到討論問題的時候

Also, when you saw her discussing issues just now.

她也是很勇於去發言去投入

She is also very brave in speaking out and getting involved.

還有她能夠對歷史的看法

And her perspective on history.

是突破她單靠書本去學習的一個層次

It is a level that breaks through her reliance on learning solely from books.

很擔心阿亨的成績

I am very worried about Ah Heng's grades.

是否達標去考DSE

Whether to meet the standards to take the DSE.

如果沒有問題的話

If there are no problems.

我們現在就開始上課了

Let's start the class now.

所以在去年

So last year

找一間補習社

Find a tutoring center.

就解釋給別人聽

Just explain it to others.

阿亨一個人不可以自己上課

Aheng cannot attend class alone.

要有我們的幫助

We need to have our help.

幫阿亨寫歷史

Help Ah Heng write history.

然後帶回來溫習

Then bring it back to review.

因為阿亨中文、數學都挺好的

Because Ah Heng is quite good at both Chinese and mathematics.

除了英文

Except for English.

所以我和她爸爸

So I and her dad

叫她在澳洲的姐姐回來

Tell her to get her sister back from Australia.

是可以幫到阿亨的

Can help Ah Heng.

這裏說918

This refers to 918.

DASH

DASH

這次回來很開心

I'm very happy to be back this time.

可以一家團聚

Can be reunited as a family.

弟弟下年又要升大學

My younger brother is going to university again next year.

我們都要幫他溫習書

We all need to help him review his studies.

幫他準備入大學的東西

Help him prepare for university.

有什麼嗎

Is there anything?

姐姐來幫忙飯菜

Sister came to help with the meal.

怎麼樣

How is it?

好久沒在家吃飯了

I haven't had a meal at home for a long time.

有些不合格

Some are unqualified.

這裏有肥豬肉

There is fatty pork here.

不行

No way.

不能吃嗎

Can't eat it?

太肥了

Too fat.

原來你都不肥

Oh, so you're not really fat after all.

你知不知道老闆去買東西

Do you know if the boss went to buy something?

他說去買東西

He said to go shopping.

他見到他才說

He only spoke after seeing him.

是不是蘿蔔豬皮

Is it radish and pig skin?

我弟弟日後沒有餐好吃了

My brother won't have good meals to eat in the future.

姐姐都看著了

Sister is watching.

病還沒治好

The illness hasn't been cured yet.

但是不要緊

But it's okay.

我們還有一個希望

We still have one hope.

科學昌明

Scientific prosperity.

明天如果真的有藥

If there really is medicine tomorrow.

放進去就可以了

Just put it in and it will be fine.

對吧

Right?

我看他好像沒病

I see that he seems to be fine.

因為從小到大

Because from childhood to adulthood.

跟他一起長大

Grew up with him.

他身體上是有病

He is physically ill.

但是他的心理和智慧

But his mind and wisdom

我不覺得他比任何人差

I don't think he is worse than anyone else.

所以我覺得

So I think.

如果我能幫到他什麼

If there's anything I can help him with.

我都會盡量幫他

I will try my best to help him.

當然希望他一天會康復

Of course, I hope he will recover in a day.

這當然是大歡喜

This is certainly a great joy.

但是不要想太多

But don't overthink it.

眼前的事他都挺好

He is quite good at what's in front of him.

保持住也挺好

It's quite good to hold on.

但是還是放心的

But still, I feel at ease.

謝謝

Thank you.

在這麼多年

Over so many years

我們都克服了很多次

We have overcome many challenges.

他的問題

His question.

所以我覺得

So I think.

我不需要再憂心

I no longer need to worry.

他的將來的健康

His future health.

因為每個人的將來

Because everyone's future

都不可以預測到

None of them can be predicted.

在不斷施術的過程當中

In the process of continuously performing the technique.

我發現原來自己也很有意義

I realized that I am also very meaningful.

我可以去不同的地方

I can go to different places.

去分享自己的故事

Go share your story.

去激勵其他人

Go inspire others.

還難生忍耐

Still hard to endure.

忍耐生老年

Endure the aging process.

我就從此變得樂觀

I became optimistic from then on.

我知道自己將來的方向

I know the direction I want to take in the future.

越短的生命

The shorter the life.

我們才要去打壓每一天

We need to suppress every day.

去愛身邊的人

Go love the people around you.

去愛我們這個社會

Go love our society.

去作出貢獻

Go make a contribution.

好

Good.

我們一家一個人

There is one person in our family.

來自給自己一個13週年

Give yourself a 13th anniversary.

一個istenciabank

An istenciabank.

不到alla

Not until allah.

导致自己精神

Causing oneself to be mental.

我們 bok

We bok

最終很精彩

The ending was really exciting.

在這個時候

At this moment

poke

poke

我們

We

愛家族

Love family