How Comic Strips Create Better Health Care | Sam Hester | TED

Transcriber: Leslie Gauthier

譯者: Lilian Chiu 審譯者: Helen Chang

This is the story of how I used comics

to help me in my role as a caregiver for my mom

in a way I couldn’t have imagined.

When I was thinking about how to tell that story,

我要講的故事是關於我如何靠漫畫

I talked a lot about it with my mom.

協助我自己照顧母親，

That’s because the story is hers.

且這一切我始料未及的。

My mom’s name is Jocelyn,

我在思索該怎麼說這個 故事時，和我母親談了很多。

and we’re not alike.

She’s an optimist.

I worry about all the terrible things that are going to go wrong.

因為這是她的故事。

She’s impulsive.

我的母親叫做喬瑟琳，

I’m cautious.

We’re so different

我們母女並不像。

that it took me a long time to realize we had something important in common.

她很樂觀。

我則總在擔心各種會出錯的慘狀。

We both respond to challenges by writing stories.

她很衝動，我很謹慎。

It took me such a long time to notice that we had this in common

我們很不同，導致我花了很長的時間 才了解我們有很重要的共通點。

because the stories we wrote were so different.

She self-published a book of poems and short stories

我們都用寫故事的方式來回應挑戰。

我花了好長的時間， 才注意到我們這個共通點，

about living with Parkinson’s disease over the last 20 years.

因為我們寫的故事很不同。

I write comics like this one.

她自己出版了一本 詩作和短篇故事的書，

And my comics are about stuff like life with my mom.

內容是關於她過去二十年間 如何和帕金森氏症共存。

Now, over the years, my mom and I got used to her physical health challenges,

我的作品則是漫畫，像這種。

but a while ago she started having cognitive challenges too.

我畫的主題包括我和母親的生活。

She couldn’t write stories anymore,

這些年來，我和母親已經 習慣了她的身體健康問題，

and communication between us kept getting harder.

My mom’s doctor didn’t get it.

但不久前，她也開始 出現認知問題了。

He asked her questions like, “Well, what city are you in?”

她無法再閱讀故事了，

She knows the answer.

He asked, “What year is it?”

我們之間的溝通變得越來越困難。

Well, she knew that answer too.

我母親的醫生搞不懂。

He just said, “You’re fine!”

他會問她這類問題： 「你住在哪個城市？」

But my mom had been having hallucinations.

她知道答案。

他問：「今年是哪一年？」

She sometimes thought she was surrounded by ghostly people.

她也知道答案。

他就只說：「你很好！」

The doctor couldn’t see it,

but my mom could ...

但我母親一直會有幻覺。

and now so can you.

有時，她會認為她被鬼魂圍繞著。

I want to tell you about graphic medicine,

a growing movement

醫生看不到，

that refers to an unlikely partnership between health care and comics.

但我母親看得到，

現在，各位也可以看到了。

Now, at the heart of this movement

我想和大家談談圖像醫學，

is a kind of a comic called a graphic pathography.

它是個還在發展中的運動， 指的是健康照護和漫畫之間

A graphic pathography just means a story about illness

難以想像的合作關係。

that’s told in a visual medium.

This comic is that kind of a story.

這個運動的核心，

是一種漫畫，叫做圖像病情記錄。

You can see the ghostly hallucinations,

圖像病情記錄指的是

and you’re invited to feel empathy for the patient’s experience.

用視覺媒體來訴說關於疾病的故事。

You can share my mom’s concern

這張漫畫就是個例子。

that her symptoms have not been recognized.

That’s one way that words and pictures can work together

各位可以看到像鬼魂的幻覺，

這張漫畫也邀請各位 去同理病人的經歷。

to tell a health care story.

And this is something anyone can do.

各位可以感受到我母親 很憂心她的症狀不被承認。

You might be thinking, “No, I’m not a comics artist.”

But that’s OK.

用這種方式，文字和圖畫可以 聯手訴說健康照護的故事。

You don’t have to be.

A health care story can benefit from very simple pictures.

每個人都可以做得到。

I'm going to show you how,

but we’ve got to go back a few years

你可能在想：「不， 我不是漫畫家。」

to a time before I drew those pictures that I just shared.

但，沒關係，你不需要是漫畫家。

非常簡單的圖畫 對健康照護故事有幫助。

My mom’s condition got worse,

我等下會再說明，

and we were in the hospital a lot.

但我們要先回到幾年前，

到我畫出剛才那幾張圖之前的時期。

By this time, hallucinations and early-stage dementia made it hard

for her to explain what was going on.

我母親的狀況惡化了，

And it was hard for the hospital staff to trust her.

我們是醫院的常客。

I was constantly hanging around the hospital.

此時，幻覺和早期的失智症讓她很難

I felt like everything depended on me.

清楚解釋發生的狀況。

Doctors and nurses came and went,

也讓醫院的人很難信任她。

arriving and leaving unexpectedly.

I felt like I was standing at the side of a highway,

我經常得留在醫院裡。

trying to get the attention of the drivers racing past.

我覺得一切都要靠我。

醫生和護理師來來去去，

There was this one evening when I really had to get home to my kids,

無法預期何時會過來和離開。

我覺得我彷彿站在高速公路邊， 想讓疾駛過去的駕駛注意到我。

but I didn't want to leave the hospital

because my mom had been having this weird symptom.

She was leaning off to the left,

有一天晚上，我非得 回家看小孩不可，

her head and upper body slumped sideways.

但我不想離開醫院，

During the day, she’d slide out of her wheelchair,

因為我母親出現一種很奇怪的症狀。

and her leg would get caught in the wheels.

And at night,

她會向左傾，

her inability to straighten out her body made it hard for her to get a good sleep.

她的頭和上身會向旁邊倒去。

白天，她會從她的輪椅上滑下來，

Now, the doctor was aware of this,

她的腳會被輪子夾住。

and we’d ruled out the possibility

that there was anything dangerous going on like a stroke.

晚上，她因為無法把身體拉直

而難以成眠。

But still, I didn’t want to leave

because the night staff were going to arrive

醫生知道這件事，我們也已經排除了

and they didn't know my mom.

會有危險的可能性，比如中風。

This sideways posture didn’t have anything to do

with the reason she’d been admitted to the hospital.

但我仍然不想離開，

因為夜班人員快來了，

They might just overlook it.

Or if they did notice it,

而他們不認識我母親。

they might assume this was just her regular posture.

這種向旁邊倒的姿勢 和她入院的原因完全無關。

And it really wasn’t.

I didn’t know what to do.

他們可能會忽略這個狀況。

And that’s when it came to me:

就算他們有注意到，

也可能會假設那是她平常的姿勢，

a picture could help.

So I drew one.

實際上卻不是。

I wrote “Help for Jocelyn.”

我不知道該怎麼辦。

“She leans to the left.

此時我靈機一動：

Please support wheelchair and bed with pillows.”

圖畫會有幫助。

所以我畫了一張圖。

I drew a circle around the leg that kept getting injured,

我寫道：「喬瑟琳需要的協助。」

and I drew my mom lying in bed,

「她會向左傾。

and I wrote, “This is a comfy sleeping position!”

請用枕頭來支撐輪椅和床。」

我把經常受傷的那隻腳圈起來，

I taped it up on the wall above her bed,

我也畫了我母親躺在床上的樣子，

and I left.

我寫道：「這是舒服的睡姿！」

And suddenly I felt I didn’t need to keep standing

at the side of the highway.

As if I just planted a big sign at the side of the road

我把這張圖用膠帶貼在她床頭牆上，

that anyone passing by would see,

我便離開了。

and I could go home.

突然，我覺得我不需要 一直站在高速公路邊。

Thanks to that picture,

I got a good night’s sleep.

感覺就好像我在路邊架設了 經過的人一定看得到的大標牌，

And so did my mom.

When I went back the next morning,

I saw that someone had propped up her left arm with a pillow.

我就能回家了。

A nurse who I’d never met had seen the picture

我那晚睡得很好，要歸功於那張圖。

and known what to do.

我母親也睡得很好。

隔天早上我回去時，

This was the first of so many pictures I drew to help my mom,

我看到有人把枕頭放在 她的左手臂下做支撐。

and what surprised me was how fast this worked.

和我沒見過面的護理師 看到了那張圖，

I carried pictures like this around with me everywhere I went

知道該怎麼做。

to pull out whenever I needed them to save me explaining things again.

我後來畫了好多圖來協助 我母親，這是第一張，

讓我意外的是這招竟然立即見效。

And I learned that a picture’s worth a thousand words

that you just don’t have time to say.

不論到哪裡，我都隨身 帶著像這樣的圖，

需要時就拿出來， 省得我還要再解釋。

Then my mom was moved to another part of the hospital,

and there was a whole new team of staff members who didn’t know her,

我了解到，一張圖勝過 你沒時間說出來的千言萬語。

so I got ready to start drawing some new pictures.

接著我母親被轉到醫院的另一區，

But then I thought ...

when I drew those first pictures for my mom,

那裡又有不認識她的 全新工作人員團隊，

I’d made choices about what health care issues to highlight on her behalf.

所以我準備好要來畫一些新的圖。

At that time, she hadn’t had the words to speak for herself,

但，接著，我心想……

我最初幫我母親畫那些圖時，

so those pictures were just my best guesses about what might help.

我其實是代表她決定選擇 要強調出哪些健康照護上的議題。

But big questions arise when you try to tell someone else’s story.

那時，她無法幫自己說什麼，

That kind of collaboration depends on trust.

圖的內容只是我的猜測， 盡可能去想怎樣有幫助。

So this time I sat down with my mom,

但，當你試圖說別人的故事時， 就會有大問題出現。

and I asked her what pictures I should draw.

那種合作要以信任為基礎。

Her answers surprised me.

She said, “Please tell them to call me Jocelyn.

所以，這次我和我母親坐下來，

They don’t know I go by my middle name!”

我問她，我該畫什麼樣的圖？

She said, “Please tell them I’m left-handed,”

她的答案讓我很驚訝。

她說：

and she asked me to draw a food tray

「請告訴他們，叫我喬瑟琳。

on which the items had been placed where her hand could reach them.

他們不知道我習慣用我的中名！」

She asked me to draw a picture that said, “Please remove lids!”

她說：「請告訴他們我是左撇子。」

她請我畫出食物盤，盤中的 物品放在她伸手可及之處。

That's because nerve damage in her hands makes fine motor skills a challenge.

She asked me to draw a picture that said, “Please fill cups halfway!

她請我畫一張圖，寫上： 「請把蓋子打開！」

那是因為她手部的神經受損， 影響到她的精細動作技能。

A full cup is too heavy!”

She asked me to draw a picture that said, “Please tell me your name!

她請我畫一張圖，寫上： 「杯子麻煩裝半滿就好！

I can’t read your name tag.”

裝滿的杯子太重了！」

And she asked me to draw a picture to go on the door of her room,

她請我畫一張圖，寫上： 「請告訴我你的名字！

so she would know which room was hers.

我看不見你的名牌。」

These small details were a big deal.

They gave me insight into challenges I hadn't even been aware of.

她請我畫一張圖， 用來貼在她房間的門上，

讓她知道哪間房間是她的。

Now, in the picture of the door of my mom’s room,

這些小細節很重要。

I drew her face.

它們讓我見識到我以前 不曾意識到的障礙。

I’ve drawn my mom so many times

I have a way of drawing her face,

but the point isn’t that it has to look anything like my mom.

至於我母親貼在房門上的那張圖，

It could be a circle with two dots for eyes.

我畫的是她的臉。

The point is that there’s a face;

我畫過我母親很多次， 因此我有一套畫她的方式。

there’s a person with a voice.

重點並不是要畫得多像我母親。

And if you listen to the picture,

the voice can be heard because the face can be seen.

可以畫一個圓圈 加上兩個點代表眼睛。

重點是圖上有一張臉；

The message matters more because it comes from someone.

那是一個有聲音的人。

如果你去聆聽這張圖，

After I’d drawn all those pictures,

因為能看見臉孔，也就能聽到聲音。

my mom asked me ...

“Now draw one more.

當訊息出自於一個「人」， 它就變得更重要。

Draw me looking healthy.

Draw me walking with my walker,

我畫了那些圖之後，

and label it: “Jocelyn’s Goal.”

我母親跟我說：

「再畫一張。

She said, “The staff here are just going to see

畫看起來很健康的我。

a sick old lady in the hospital bed,

畫我用助行器走路，

someone who’s weak and confused.

再標上『喬瑟琳的目標』。」

It’s easy to think that’s all I am.”

She said, “I want them to understand what we’re working for.

她說：「這裡的員工只會看到 一個生病的老女人躺在病床上，

Sometimes you have to see it to believe it.”

虛弱且迷惑的老女人。

If I’m honest,

很容易就會認為這就是我的一切。」

I have to admit that sometimes I was the one

who just saw the sick old lady in the hospital bed.

她說：「我想讓他們了解， 我們在努力做什麼。

And trying to capture my mom’s goal in a picture

有時你得要看到才會相信。」

helped me believe in it more myself.

老實說，我得承認，有時我自己

也只看到一個生病的 老女人躺在病床上，

My mom did reach her goal,

and a few months later,

she walked out of the hospital on her own two feet.

協助母親把她的目標畫出來，

讓我自己也更相信這個目標。

She moved to long-term care,

and for the first time her care needs were more managed and predictable.

我母親確實做到了，幾個月後， 她靠自己的雙腳走出醫院。

Now she did still hallucinate about being surrounded by ghostly people.

她轉到長期照護，

But my mom and I have always responded to challenges by writing stories,

這是頭一次，她的照護需求 比較好處理且在預期範圍內。

她的確還會有鬼魂圍繞著她的幻覺。

and now we’ve learned to write stories together ...

like this one.

但，我和我母親向來都是 用寫故事的方式來回應挑戰，

Here’s me asking my mom, “How’s the writing going?”

And she responds, “Not great.

現在，我們學會了一起寫故事……

Maybe I need a ghostwriter!

I already have the ghost!”

就像這個。

在圖中，我問我母親： 「寫作進行的如何？」

Remember my mom’s doctor,

the one who didn’t get it?

她回覆：「不好。也許 我需要幽靈寫手（指代筆）。」

That comic about him was part of this same story.

我已經有幽靈了。」

It’s a comic my mom and I wrote together

for a magazine dedicated to destigmatizing dementia

記得我母親的醫生嗎？ 搞不懂的那位。

and supporting people impacted by this disease.

關於他的那張漫畫 也是這個故事的一部分。

My mom’s name appeared in the byline right next to mine.

那是我和我母親一起創作的漫畫，

刊載在某雜誌上，雜誌的宗旨 是為失智症除去汙名，

And this comic was one of the ways we carefully documented her symptoms,

並支持受此疾病影響的人。

which led to her being able to start a new medication

我母親的名字就放在我的署名旁邊。

that helped with those ghostly hallucinations.

But more than that,

這種漫畫是我們仔細記錄 她的症狀的方式之一，

this comic let her use her experience

to help others whom the magazine could reach.

結果讓她能開始接受新的藥物治療，

協助解決她的鬼魂幻覺。

And besides,

isn't it just cool that a medical magazine these days has comics?

但，除此之外，

這套漫畫讓她可以用她的經驗

協助該雜誌可以觸及的人。

My mom and I have continued to write comics together,

and she’s continued to trust me

而且，現在的醫療雜誌上 能有漫畫不是挺酷的嗎？

with sharing the stories of life with dementia

and life in long-term care during the pandemic.

我和我母親持續合作創作漫畫，

I think she's been OK with me sharing these vulnerable moments

她也持續信任我，

分享關於失智症的生活故事，

because she knows I’m not just telling the story

以及疫情期間長期照護的生活故事。

of a sick old lady in the hospital bed.

She knows I understand

我想，她之所以願意讓我 把這些脆弱的時刻分享出去，

that even though I may be the one drawing the pictures,

she’s a collaborator with an equal part in the work.

是因為她知道我要說的故事不只是 一個生病的老女人躺在病床上。

And here’s my mom saying ...

“Do not write about that in this comic!”

她知道我很清楚， 雖然執筆畫畫的人是我，

她仍然是有同等重要性的合作夥伴。

The reason this all started didn't have anything to do with art or writing

在這張圖中，我母親說：

or even health care.

「別把這個放到漫畫中！」

It came from me wanting to help my mom.

And that’s the same power you have

這一切的源頭，和藝術、寫作， 甚至健康照護都沒有任何關係。

in your relationships with the people you care for.

You know their health care needs,

它來自我於想要協助我母親的心。

you live their stories with them.

對於你所照顧的人， 你也同樣具有這種力量。

I understand you may still feel a bit skeptical

about showing up at the doctor’s office with a sketchbook,

你知道他們的健康照護需求， 你和他們一起經歷他們的故事。

but you may be surprised to discover

that the people in your health care community

我知道你可能會對於帶著素描簿 去醫生診間這件事抱持懷疑，

are already familiar with graphic medicine,

the growing movement at the intersection of health care and comics.

但你可能會很驚訝地發現， 在你健康照護圈中的人

They may already know how a picture can be an amazing time-saver

已經很熟悉圖像醫學

or a tool for creating empathy and personal connections.

這個涉及健康照護以及漫畫， 且還在發展中的運動。

Just imagine if your new doctor opened your chart

他們可能已經知道， 圖像能幫他們省下很多時間，

and saw pictures that sparked curiosity about the person,

或者圖像是種能創造同理心 和個人連結的工具。

not just the symptoms.

想像一下，你的新醫生 打開了你繪製的圖，

When I looked at all the pictures I’d drawn of my mom,

看到的圖像讓醫生 對當事人產生好奇，

I did see her symptoms,

but I also see my mom.

而不是只想了解症狀。

She’s there in all the words and pictures that have continued to hold us together.

當我去看我為我母親畫的那些圖，

Jocelyn: [Thanks for helping me!]

我確實會看到她的症狀，

SH: [I thought you were helping me.]

但我也看到了我母親。

所有那些文字和圖像中 都有她的影子，

持續將我們緊繫在一起。

講者：〔謝謝你幫我！〕 喬瑟琳：〔我以為是你在幫我。〕