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

Transcriber: Leslie Gauthier

翻译人员: Yifang Zheng 校对人员: 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,

这是一个关于我用漫画

I talked a lot about it with my mom.

来帮助我照顾母亲的故事

That’s because the story is hers.

而且是用一种我以前难以想象的方式

My mom’s name is Jocelyn,

当我在思考如何讲述这个故事时

and we’re not alike.

我和我的母亲聊了很多

She’s an optimist.

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

因为这毕竟是一个关于她的故事

She’s impulsive.

我母亲的名字是乔瑟琳

I’m cautious.

We’re so different

我们母女俩并不相像

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

她是个乐观的人

而我则整天杞人忧天

We both respond to challenges by writing stories.

她感情用事

而我则谨小慎微

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

我们实在有太多处不同

我过了很久才意识到 我们有一个重要的共同点

because the stories we wrote were so different.

She self-published a book of poems and short stories

我们都用写故事来面对困难

我之所以过了很久才发现这一共同点

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

是因为我们写的故事有很大的不同

I write comics like this one.

她自己结集出版了一本 短篇小说和诗歌的合集

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

主题是20年来她和帕金森病的缠斗

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

我写的则是像这样的漫画书

but a while ago she started having cognitive challenges too.

这些漫画大多是关于 我和我的母亲的生活

She couldn’t write stories anymore,

这么多年来，我们母女俩已经习惯了 她生理方面的障碍

and communication between us kept getting harder.

My mom’s doctor didn’t get it.

但是最近她在认知上也开始有障碍了

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

她失去了阅读故事的能力

She knows the answer.

He asked, “What year is it?”

我们之间的交流也变得越来越困难

Well, she knew that answer too.

我母亲的医生没法理解她的认知障碍

He just said, “You’re fine!”

他会问她一些问题 比如“你住在哪个城市？”

But my mom had been having hallucinations.

她知道答案

他又问：“今年是哪一年？”

She sometimes thought she was surrounded by ghostly people.

她也知道答案

他就会说：“你身体好的很！”

The doctor couldn’t see it,

but my mom could ...

但是有时我母亲还会出现幻觉

and now so can you.

她有时会觉得 身边有一群幽灵包围着自己

I want to tell you about graphic medicine,

a growing movement

医生看不到这些幽灵

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

但是我母亲可以看到

现在你也可以看到

Now, at the heart of this movement

我想给大家讲讲“图像医疗”

is a kind of a comic called a graphic pathography.

这是一个正在发展中的领域

主要研究漫画和医疗保健的关系

A graphic pathography just means a story about illness

that’s told in a visual medium.

This comic is that kind of a story.

这个领域的核心

是一个叫做“图像式病史”的概念

You can see the ghostly hallucinations,

“图像式病史”的意思就是把疾病

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

用可视化媒介表达出来

You can share my mom’s concern

that her symptoms have not been recognized.

漫画就是其中的一种

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

你可以用眼睛看到幽灵的幻觉

你可以和病人的经历产生共情

to tell a health care story.

And this is something anyone can do.

你可以感受到我母亲的担忧

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

担忧她自己的症状不被医生承认

But that’s OK.

文字和图片结合在一起

You don’t have to be.

A health care story can benefit from very simple pictures.

就很好地讲述了一个疾病的故事

这是一件大家都可以去做的事情

I'm going to show you how,

but we’ve got to go back a few years

你可能会想：“我可不是什么漫画家”

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

但没关系

你不用成为一个漫画家

用很简单的图画也可以讲好疾病故事

My mom’s condition got worse,

接下来让我好好解释

and we were in the hospital a lot.

我们先往回倒几年

回到我画刚才那些画之前的时候

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

for her to explain what was going on.

当时我母亲的身体每况愈下

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

我们常常要去医院

I was constantly hanging around the hospital.

她当时还有幻觉和早期痴呆症

所以她很难描述自己的症状

I felt like everything depended on me.

Doctors and nurses came and went,

而医院的工作人员也很难相信她说的话

arriving and leaving unexpectedly.

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

我一直在医院里待着

trying to get the attention of the drivers racing past.

感觉好像所有的责任都在我身上了

医生和护士来来去去

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

来去都匆匆忙忙

我感觉我好像站在一个高速公路旁边

but I didn't want to leave the hospital

想要让飞驰而过的司机注意到我

because my mom had been having this weird symptom.

She was leaning off to the left,

有这么一天晚上 我真的很需要回家照顾孩子

her head and upper body slumped sideways.

但是我又不想离开医院

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

因为我母亲当时出现了 一个很奇怪的症状

and her leg would get caught in the wheels.

And at night,

她身体一直向左边倾斜

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

她的头和上半身一直侧斜

白天时，她容易从自己的轮椅中滑出来

Now, the doctor was aware of this,

她的腿还会被轮子卡住

and we’d ruled out the possibility

that there was anything dangerous going on like a stroke.

到了晚上 因为她无法伸直自己身体

所以很难睡个好觉

But still, I didn’t want to leave

because the night staff were going to arrive

当时的医生知道这个情况

我们认为有可能

and they didn't know my mom.

她有中风之类的危险

This sideways posture didn’t have anything to do

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

但是我还是不想离开

因为晚班的医院员工马上要上岗了

They might just overlook it.

Or if they did notice it,

而他们并不认识我的母亲

they might assume this was just her regular posture.

我母亲这种向侧边倾斜的症状

And it really wasn’t.

和她进医院的病症无关

I didn’t know what to do.

他们可能会直接无视这种症状

And that’s when it came to me:

或者有可能注意不到

他们可能会以为这是她日常就有的姿势

a picture could help.

So I drew one.

但是她平日里真的不是这样的

I wrote “Help for Jocelyn.”

我不知所措

“She leans to the left.

这时候我突然意识到

Please support wheelchair and bed with pillows.”

也许画一张画可以有用处

于是我画了一张画

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

我写道：“请帮帮乔瑟琳”

and I drew my mom lying in bed,

她身体一直向左边倾斜

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

请用枕头来撑住她的床和轮椅

我圈出了那只经常受伤的腿

I taped it up on the wall above her bed,

然后我画了我母亲躺在床上的样子

and I left.

写道：“这个睡觉的姿势很舒服！”

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

我把这张画贴在她床头的墙上

that anyone passing by would see,

然后离开了

and I could go home.

突然间我意识到我不用一直站在

Thanks to that picture,

I got a good night’s sleep.

高速公路的旁边

好像我只要在高速的路边树一个牌子

And so did my mom.

When I went back the next morning,

让所有路过的人都能看到

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

那我就可以回家了

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

多亏了那张图片

我睡了个好觉

and known what to do.

我的母亲也睡了个好觉

第二天早上当我回去的时候

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

我看到有人在她的左胳膊下面 垫了个枕头

and what surprised me was how fast this worked.

一个我不认识的护士看到了那张画

I carried pictures like this around with me everywhere I went

知道了要怎么做

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

我画了很多张帮助我母亲的画 这是第一张

让我惊讶的是，这些画 真的很快就起作用了

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

that you just don’t have time to say.

不管去哪里，我都随身带着这种画

这样我就可以随时拿出来 不用重复解释一些事情

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,

我认识到了，一图真的胜千言

这些事情，用说的总是会时间不够

so I got ready to start drawing some new pictures.

后来我的母亲被转到了 医院的另一个地方

But then I thought ...

when I drew those first pictures for my mom,

那里有一整个团队的医院员工 都不认识她

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

所以我准备开始画一些新的画

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

然后我想到

我在给我的母亲画那第一批画的时候

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

我替她选择要突出哪些健康问题

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

那个时候她没法为自己发声

That kind of collaboration depends on trust.

所以都是我在尽量猜 画哪些内容可能有帮助

So this time I sat down with my mom,

但如果你尝试着讲一个别人的故事 就会出很大的问题

and I asked her what pictures I should draw.

这种合作取决于双方的信任程度

Her answers surprised me.

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

所以这次，我和我的母亲一起坐下来

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

我问她，我应该画什么样的画

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

她的答案让我感到惊讶

她说：“请让他们叫我乔瑟琳”

and she asked me to draw a food tray

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

他们不知道我一般用的都是中间名

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

她说：“请告诉他们，我是个左撇子”

她让我画一个餐盘

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

上面所有的东西都放在 她可以拿得到的地方

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

她让我画一张图 上面写“请把盖子拿掉”

因为她手部神经受损 很难做这些精细的动作

A full cup is too heavy!”

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

她让我画一个杯子上面写 “请把杯子装到半满”

I can’t read your name tag.”

装满整杯的话太重了

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

她让我画一张图 上面写“请告诉我你叫什么”

so she would know which room was hers.

我看不到你的姓名牌

These small details were a big deal.

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

她还让我画一张图 放在她房间的门上

这样她就可以知道哪个房间是她的了

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

这些小的细节其实意义很大

I drew her face.

它们让我看到了很多 我之前没意识到的困难

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.

在我母亲房间门上的画里

It could be a circle with two dots for eyes.

我画了一张她的脸

The point is that there’s a face;

我画我母亲的脸画了太多次了

there’s a person with a voice.

我已经总结出一种固定的方式来画了

但是重点不在于要画的多像我母亲

And if you listen to the picture,

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

甚至可以直接画一个圈 里面画两个点当眼睛

重点是，一定要画一张人脸

The message matters more because it comes from someone.

这个人是能够发声的人

如果你仔细倾听这幅画

After I’d drawn all those pictures,

正是因为有这个人脸 所以人的声音才能被听到

my mom asked me ...

“Now draw one more.

这其中的信息更重要 因为它来自一个活生生的人

Draw me looking healthy.

Draw me walking with my walker,

在我画了这些画之后

and label it: “Jocelyn’s Goal.”

我母亲跟我说

现在再画一张

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

画一张我健康的样子

a sick old lady in the hospital bed,

画一张我用助行器走路的样子

someone who’s weak and confused.

写上：“乔瑟琳的目标”

It’s easy to think that’s all I am.”

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

她说：这里的工作人员只能看到

一个躺在医院病床上的病恹恹的老妇人

Sometimes you have to see it to believe it.”

一个脆弱而迷茫的人

If I’m honest,

他们很容易以为这就是我的全部了

I have to admit that sometimes I was the one

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

她说：我想让他们明白 我们的目标是什么

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

有时候你只有用眼睛看到 才能真正相信

helped me believe in it more myself.

要我说实话

我必须承认，有时候我才是那个

只能看到病床上病恹恹老妇人的那个人

My mom did reach her goal,

and a few months later,

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

通过用图画来表达我母亲的目标

让我自己更加相信这个目标

She moved to long-term care,

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

后来我母亲真的完成了她的目标

几个月之后

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

她用自己的双脚走出了医院大门

她转为接受长期照护

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

这是第一次，她的需求 变得更加容易管理和预测

现在她还是会有被幽灵包围的幻觉

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

like this one.

但是我们母女现在会用故事创作 来面对这些困难

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

And she responds, “Not great.

现在我们已经学会了一起写故事

Maybe I need a ghostwriter!

I already have the ghost!”

比如下面这个

这个是我在问我的母亲：写得怎么样了？

Remember my mom’s doctor,

the one who didn’t get it?

她回答：不怎么样

That comic about him was part of this same story.

也许我需要一个幽灵写手来帮我写

毕竟我身边已经有幽灵了

It’s a comic my mom and I wrote together

for a magazine dedicated to destigmatizing dementia

还记得我母亲的那个医生

还记得那个不太明白 我母亲症状的医生吗？

and supporting people impacted by this disease.

那个关于他的漫画 就是这个故事的一部分

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

这是一本我和我的母亲一起创作的漫画

发表在一本致力于 消除痴呆症的耻辱感的杂志上

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

帮助那些被这个疾病困扰的人们

which led to her being able to start a new medication

我母亲的名字出现在署名中 就在我的旁边

that helped with those ghostly hallucinations.

But more than that,

这本漫画是我们仔细记录 她的症状的方法之一

this comic let her use her experience

to help others whom the magazine could reach.

这让她可以开始使用新的药物

来帮她缓解了那些幽灵的幻觉

And besides,

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

但是不止于此

这部漫画让她能够用自己的经历

来帮助这本杂志可以接触到的其他人

My mom and I have continued to write comics together,

and she’s continued to trust me

而且一本医学杂志上面有漫画 这件事本身不是就很酷吗？

with sharing the stories of life with dementia

and life in long-term care during the pandemic.

我和我的母亲继续在一起创作漫画

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

她也一直信任着我

由我来分享她和痴呆症共处的故事

because she knows I’m not just telling the story

以及她在疫情之下接受长期照护的故事

of a sick old lady in the hospital bed.

She knows I understand

我觉得，她之所以能够 让我分享她的这些脆弱时刻

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

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

是因为她明白，我不只是在讲述一个

在医院病床上的病恹恹的老妇人的故事

And here’s my mom saying ...

“Do not write about that in this comic!”

她知道我明白

虽然我是那个真正画画的人

但是在这个过程中，她也同样参与其中

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

这是我母亲在说

or even health care.

不要在漫画里说那些东西

It came from me wanting to help my mom.

And that’s the same power you have

这件事情的开端和写作 艺术这些事情都无关

in your relationships with the people you care for.

甚至和医疗保健都无关

You know their health care needs,

最开始只是我想要帮助我的母亲

you live their stories with them.

而你也拥有这种力量

I understand you may still feel a bit skeptical

在你和你关心的人之间

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

你懂得他们在健康上的需求

but you may be surprised to discover

that the people in your health care community

你和他们一起经历风雨

我知道你可能还是持怀疑态度

are already familiar with graphic medicine,

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

居然要带着一本速写本去医生办公室

但是你可能会惊讶地发现

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

你所在的卫生保健社群中

已经有很多人很熟悉图像医疗

or a tool for creating empathy and personal connections.

这种发生在医疗保健 和漫画之间的交叉变革

Just imagine if your new doctor opened your chart

他们可能已经明白 一幅图画可以省下很多时间

and saw pictures that sparked curiosity about the person,

可以产生人与人之间的交流和共鸣

not just the symptoms.

想象你的新医生打开了你的病历

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

看到了图画，从而产生了 对这个人本身的好奇

I did see her symptoms,

but I also see my mom.

而非只是对这个人的症状

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

当我翻看我画的我母亲的图片时

Jocelyn: [Thanks for helping me!]

我确实能了解到她身上的症状

SH: [I thought you were helping me.]

但是我也能看到我母亲这个人

她就存在于这些 维系着我们的的文字和图画之中

（SH：谢谢你对我的帮助）

（乔瑟琳：不是你在帮助我吗）